Story written 2009

Tie was born with skin missing from his lower legs and feet. Within hours his tiny body had become covered in blisters and skin had torn off his left hand. Even his mouth was blistered inside after nurses tried to feed him a bottle of infant milk. No one knew what was wrong with Tie until a week or so later. A diagnosis of severe EB was made whilst at Alder Hey Hospital in Liverpool. Tie was transferred back to our local hospital in Gwynedd where it was found he had worsened to the point where we were told he would likely die. We chose to bring him home to at least be amongst his family.

After round the clock nursing the plucky little fighter turned a corner and his temperature dropped and he recovered. It still wasn’t known how long Tie had to live as only a basic diagnosis of Severe EB had been made and a skin biopsy result was needed to tell how severe. The worst form of EB gives only a life expectancy of 1 year. After a painful wait we were finally told that we would have Tie a little longer! He had the second worse form. All of his bodies’ linings are missing the hooks that hold them in place (skin, eyes, mouth, oesophagus etc). Any friction against a lining causes it to detach in part or wholly, leaving either blisters that have to be drained as they appear, or an open wound. When eyes blister, Tie has to spend his time in a darkened environment until they have healed. His prognosis is one of constant wound dressing that we do each day, his fingers and toes will web and fuse together as a result of repeat damage, and contractures will also add to his disability. He is (and will always be) administered morphine, paracetamol and iron until an effective treatment is found. Fluid loss and wound infections pose a constant threat and he always has to be handled extremely carefully so as not to de-skin him. Because of scarring and narrowing of the oesophagus due to repeated damage, he will eventually find eating difficult, which often leads to a gastric tube being fitted in infancy to aid nutrition and administration of painkillers and medicines. Eventually aggressive cancer will set in as his skin loses its self healing power and beings to breakdown. This is likely to happen in his late teens, but children often pass younger from other complications. Tie’s life expectancy is 30 years.

So we do what we can to make his life as happy as possible and also everything we can do to help Debra charity fund the research that we pray will one day save Tie and end his pain.

Every day he lifts our hearts and amazes us with his smiles and determination.

Update 3rd March 2016

Tie has had a cold this month. Unfortunately he had sore eyes to go with the cold and had to stay in his bedroom in the dark for a few days. He is a lot better now, the cold has now passed over to his brother and baby sister who also have the same condition.

Update 12th February 2016

Tie has been doing well and nothing has really changed with him. But Calvin had an operation to have all his teeth removed and he has recovered well.

Update 26th January 2016

Tie would like to wish everyone a happy new year and thank everyone who sent out letters, gifts and cards. They mean a lot. He loves receiving them as it brightens his days.

Tie is currently still being taught at home by a tutor. Tie is doing very well, but unfortunately Calvin will be going into Birmingham Children’s Hospital for an operation. They will be taking out his teeth as they are rotting away due to the condition.

Both boys are looking forward to having their bedroom redecorated with a blue theme with glitter wallpaper.

Will let everyone know how Calvin is next month.

Update 5th December 2015

Tie is well. He can’t wait until Christmas. He’s had a good month. He, Calvin and Princess all had their hospital check up and all is well.

Update 22nd October 2015

Tie has been well. He enjoyed his birthday and got lots of large Star Wars figures. I now home tutor Tie and Calvin due to an incident at school. Hopefully after Christmas he will be going to a different school with his siblings. Tie doesn’t mind, as he loves being at home with his baby sister who is now 6 months old. But he also gets spoilt! Having the boys at home means they have less bumps and knocks, which is good for them and means less open wounds so they’re less likely to get cancer in their late teens.

Update 6th August 2015

Tie is looking forward to his birthday as I am doing a build a teddy party for him with some of his friends at Teddy Wishes.

Tie is wearing less dressings on his feet and legs now as he doesn’t sweat as much.

So far he has had a good summer with it not being too hot.

Tie has enjoyed receiving all the items through the post and he thanks everyone who has sent him them.

Update 4th July 2015

Tie and Calvin (his younger brother who also has EB) have been to Birmingham children’s hospital for their yearly check and all is well and they seem happy with them. They are concerned about the boys’ hands as the skin has crept up their fingers, so the hospital is arranging splints for the boys.

Both boys were able to enjoy my birthday (mum) at Chester Zoo last month. Tie and Calvin will also be going on a school trip to GreenWood this month which they are looking forward to. Unfortunately we won’t be going to Alton Towers now, but will be going to the Blue Planet Aquarium instead. All the children are looking forward to it.

Tie and Calvin’s health has been good this last month. Calvin did have an accident in school and was sent home, but he’s recovering well.

Thank you for the paper cutting art work we received this month.

Update 31st May 2015

Tie had a stomach bug during this half term and had infected eyes, along with his brother Calvin. They are much better now.

We went to Gulliver World on Friday where Tie and his siblings really enjoyed themselves. Tie and Calvin found it a bit tiring but still enjoyed it. We will be going to Chester Zoo next weekend and Tie is really looking forward to seeing all the animals.

Tie and his siblings would like to thank everyone who sent them post.

Update 14th May 2015

Tie is doing very well. Unfortunately with the weather getting warmer he is suffering with more blisters and infections, and he also has a nasty cold at the moment, but is still able to attend school. Tie is doing well at school and is now in Year 3 in Juniors which he is enjoying. He goes with his class swimming every week, but is unable to go swimming himself due to his condition. Tie has started to play some sports in school which he is enjoying but has blistered his hands doing games. He loves doing arts and crafts which he does both in school and at home.

Tie is eating a lot better, he has put on weight and has started to try different foods. He still has his fortisips to help with his weight though. We also still have to attend appointments once a year at Birmingham, however they are really pleased with him lately.

Tie is looking forward to this summer as we will be taking him to Alton Towers and Gulliver’s World.

Five weeks ago, Tie’s new baby sister, Sapphire, was born. Sapphire has the same condition as Tie and Calvin. Tie loves his new sister and plays with her a lot as he is able to calm her down if she is crying.

Update 19th September 2014

Tie and his younger brother Calvin had a good summer! Not too bad with extra sores/damages etc brought on by the skin and body’s membranes becoming irritated by the warmth. Saying that, Tie had suffered from an extreme flushing from around June/July time, which we think was just some leftover from a virus that didn’t want to shift. It cleared up over the holidays thankfully.

Both boys had been booked in for their 6 month MOT at Birmingham children’s hospital at the end of August, but a few days before both of them developed temperatures and BCH advised that it would be best to re-arrange the appointment. A day later and Calvin came up with what could only be chickenpox spots… they didn’t look like chickenpox, but symptoms and how they appeared made us suspect chickenpox. The boys skin alters the look of somethings like chickenpox sometimes. The doctor confirmed that he felt it was chickenpox too, but gave a course of antibiotics for Calvin, just to be safe as he couldn’t make a proper diagnosis. Tie had chickenpox when he was younger and did not develop anything apart from a fever this time. Within a week both boys were back on the mend.

Both young men have gained weight over the summer, but are now finding the heat very weary. Tie often just leans over his desk in school as he is so worn out by the heat there. The school have set up a fan by him, as his classroom has no air conditioning.

They sleep well as their bedroom has air conditioning installed and in this weather it gives them a well earned break.

Like I say, both boys are doing well. We are hopeful for them and their futures and are keeping that shield held up firmly in front of us, blocking out all that could potentially go wrong. We are concentrating on the positives and they are gaining weight, which is a first for Tie.

Thank you all for your support and best wishes to you all. It really makes the children smile when they receive post.

Update 17th June 2014

Tie has been suffering with a recurrence of sore eyes/blistered eyes since temperatures started to rise. On good days he has been attending school, but has often had to attend only half a day due to tiredness and getting upset. On the whole he is doing quite well I suppose for a boy with his troubles, but he does find it hard going when he is tired.

As with his brother, their best aid in a good nights sleep is alimemazane, which does help them both settle. The main problem at night now is the heat, but we do chill their room down to 18 degrees celsius before bedtime and that helps them too. We have to chill it down before bedtime, as they can’t stand having the air con running all night as it dries out their throats too much!

Again, the warm weather is having the usual affect on the boys wounds and blisters as they are getting more of them, from sweating and being uncomfortable and itching.

Appetite wise, the heat makes them feel like eating less and as they are already really at the bottom of the weight charts, it is not helping! There is a good chance that they both may end up on gastric tubes to assist their nutrition, but we are still hopeful that we can avoid that outcome.

Both boys are still anaemic and receive iron every day to help them.

It’s all work for the boys at the moment, even if it is just with healing and getting better! But we hope when the summer holidays arrive we will be able to give them one or two fun family days out to lighten their lives.

Thank you all for your cards, letters and kind gifts. It all helps brighten their days, especially the sore eyes days, when we live inside with the curtains closed to keep the house dark for them because the light hurts their eyes.

Thank you all and best wishes from us.

Update 22nd May 2014

Tie’s major concern at the moment is his weight, or lack of, I should say. Gaining weight is always an issue with severe forms of EB! If it is not a sore, ulcerated and ripped mouth/tongue, it is a sore damaged throat or constipation!  We have movical which helps toileting difficulties quite well, but sadly it doesn’t taste too nice to Tie, so he tends to wait until he has an issue before he will accept the movical!

Weight gain is such an problem for these butterfly children, most have gastric tubes fitted to aid them get to a better level of nutrition. Tie and his brother Calvin are both likely to need such a tube in the future, but neither want one and it is only the thought of having a tube fitted that drives Tie on to eat a little more than he wants to.

Another problem is sickness. We all go off our food a little when we are ill, and sadly our boys have been suffering with a viral illness of some type for the last couple of weeks, so we are just trying to keep them eating something. It is strange how they always manage to eat chocolate!!

With the warm weather starting the boys have had a few extra unsettled nights, so we have been using alimemazane a little more frequently than usual to help counter the warmth (which makes them feel sweaty and uncomfortable). The alimemazane is a anti histamine, prescribed officially to reduce their itching of dry and damaged skin, but unofficially it works more as a sedative than anything else. At least it gives them a couple of hours of proper rest each night. We do have an in built aircon unit in their double room, but we can’t run it overnight as it dries out their throats too much and in the morning they are choking. The best thing we have found is to run it on an evening to chill down their room before bed, which helps a lot, so long as one of the kids doesn’t go and leave their bedroom door open.

Calvin and Tie have both had sore eye days too recently when they have slept in late and then we have to close the blinds and curtains in every room to ease their suffering, as their eyes become very sensitive to light when they are sore from blistering.

Tie is enjoying school, but is missing a lot of school too. He and Calvin are both home at the moment as they are still recovering from viral illness.

Tie loved the Disneyland letter, as we went to Disneyland Paris in 2012. He got to meet Stitch in an interactive show, so Stitch is now one of Tie’s special friends from another planet and he loves hearing about Disneyland and keeps asking us when he can go there again! We hope to go again in the future, but for the moment our holidays will be a bit closer to home.

Jessica is now 16 and has asked me to say a big thank you to everyone who has sent her post since Tie has been a Pal. She has loved the letters and pictures sent through to her, not to mention the vampy gifts. So thank you very much.

Next week is half term here, so we hope that Tie and Calvin will be fine soon and enjoy the holiday from school and then be fit and well to start school again after the break.

Update 14th January 2014

Both Tie and Calvin are currently doing well. They did have a bad patch after receiving the flu immunisation spray and they suffered for a couple of months with every bug and illness they could pick up after it, but came through it all fighting. We knew the flu spray would hit them hard, but we also knew that the alternative was even worse. If anyone saw Children In Need last year you may recall two brothers who suffered from the worst form of EB who passed on within a couple of weeks of each other after catching the flu. So, we knew we had to get our boys treated.

Tie has been working with physio after we found one leg to be about a cm smaller than his other. It is so minor that ordinarily it would be overlooked, but with reduced ability, it is highlighted, especially when the damage to his foot from walking shows up where the pressure is being placed. He is progressing well with it.

We are also working on separating his toes. Surgery was refused when his feet got to the stage when he could hardly walk on them as his toes were pinned to his sole and therefore scrunched up! So we knew we had to take charge and started placing straps of dressing and soft ones between each toe (well in some instances on the skin were the gaps should be between the toes) and after two months of doing this every morning and night, the toes are nearly all back! They are still pinned to an extent so his toes are curled over a bit, but they are individual toes, where they had been webbed. The light pressure we applied with the straps was enough to stretch the webbing away! So we feel like one more little battle is nearly won there. However they are little battles, the war overall is still on and we aren’t quitting!

The boys had a illness free Christmas, well almost anyway. They loved it and all the cards and kind gifts. We have been very busy since before Christmas as we have gone back to work, so our apologies for a lack of personal replies to everyone, but your efforts are appreciated and hep put a smile on our boys faces – and thats priceless. Calvin has avoided a lot of pitfalls of his condition as we have been prepared for them thanks to learning through Tie’s experiences, so he is doing well. He eats well too, but does sometimes get a sore throat and then chokes on everything (except chocolate strangely – how do they always manage to eat chocolate? It is truly a miracle food!) but each time he has a bad patch he gets over it.

Of course, now the cold weather is here their condition eases a little… how can i put it? If you came to them now without any previous knowledge/experience, it would be too bad and too much to handle/cope with, but as a seasoned carer you have the knowledge that in summer the condition gets ten times worse (hence the air-conditioned bedroom, which in summer is a life saver).

To sum up, both boys are continuing their battles but mostly with smiles. Plus our new toothpaste has kept their teeth in good condition for over a years checkups now so we are happy!

Thank you every one for your support.

Update 2nd April 2013

Tie would like to thank everyone who has sent him and his siblings things.

Tie has had a lovely Easter holiday with plenty of eggs. He really enjoyed his Easter egg hunt at home which I made for him and his siblings.

Update 2nd March 2013

Tie is having a bad weekend, his eyes have blistered once again, so he is having to sit on the sofa in pitch black. Hopefully he will be better by Monday for school.

Tie celebrated Saint David’s day last Friday with his school where he enjoyed a disco, while Jamie-Anne sang with the school choir at our local Asda.

Update 3rd February 2013

Tie has had a good month so far, he has been back at school and has handled it very well and only had 2 days off due to tiredness.

Calvin had his routine hospital appointment which we had to travel all the way down to Birmingham for and when we got back I had loads and loads of hugs from Tie.

Update 14th January 2013

Tie has had a wonderful Christmas and we would like to thank everyone who sent cards and presents. Tie and his siblings love their post and they hope that everyone had a wonderful Christmas and New Year too.

We would especially like to thank Doncaster’s computer company for giving Tie a brand new windows 8 laptop – he loves it to bits and constantly plays on it. Thank you so much.

Update 9th December 2012

Once again, Tie would like to thank everyone for their generosity. To everyone who has sent Tie or his siblings an item and has put their address on – we will be sending a Christmas card to you. Thank you all for your kind letters, cards and gifts, they are well appreciated.

Christmas is just around the corner and Tie has already made his list. He is really looking forward to santa popping in and leaving a few gifts – poor santa, it is not going to be cheap!

Tie will be in his school play – he’s only a sheep, as he’s been missing a lot of school due to a nasty cold which has caused him to weaken. When Tie gets weak he tends to fall a lot, but while he has been at home poorly he’s only been chilling on the sofa. Unfortunately, Tie doesn’t like doing the Christmas show as the music is too loud for his delicate ears – we’re hoping to put extra soft earphones on him.

Have a good Christmas and a happy New Year.

Update 12th November 2012

Tie and his siblings would like to thank everyone who sent halloween items. Tie and his siblings had a halloween party which they all enjoyed. Tie was dressed as a skeleton and Calvin as a wizard. They danced to music with friends and enjoyed loads of food.

Calvin would like to thank the very nice lady who bought him the polar bear items, he really loves them.

Tie and Calvin have both recently had very poorly eyes where they have rubbed them in the night and they have blistered. Tie had sore eyes a week ago and Calvin has them today, he sat on the sofa all day unable to open his eyes, so he kept on drifting in and out of sleep.

Mercedes and Harriet would like to thank everyone who has sent out birthday cards for their birthdays this Tuesday and Thursday. Mercedes will be 5 on Tuesday and Harriet 9 on Thursday.

Tie can’t wait for Christmas, in school they are starting to rehearse for the school play and he has already made a list for Santa.

Update 5th October 2012

Tie is doing well, he has had a good month with not many blisters or open wounds. He is doing very well in school and is using a special pen and pencil were he doesn’t need to press when writing. Tie’s teeth are also starting to come through so he can eat better now.

Last week Tie was very upset as we had to put 3 of our rabbits down due to a nasty illness, but Tie is happy as the baby rabbits are doing well and are now 5 weeks old.

Tie can’t wait for Santa to come, he has already started making his Christmas list!

Once again, Tie would like to thank everyone who has generously sent post to him. Jade would like to thank the very kind children for her gifts, she loves them loads. Thanks for the children’s post.

Update 16th September 2012

Tie just recently had his 6th birthday on the 2nd September – we bought him Lego star wars, and transformers, and a vintage star wars ship with people, which he loves to bits.

Tie had an operation back in July where he had all his teeth removed (apart from 4 front bottoms ones). Two months on and four front adult teeth have finally come through, so he is able to eat a bit better now.

Tie started in year 1 of school, he has settled down very quickly and is enjoying every minute of school. Instead of P.E. he does his special exercises to help his skin stretch. Unfortunately Tie is unable to run around with his friends and can’t play outside with them at playtime, so he stays indoors where he won’t get knocked accidently by other children. He finds it hard as he wants to play with his friends, but is scared to as his friends don’t understand properly that they have to be very careful around him.

Due to Tie’s condition, he can only write for a little while as the friction of the paper on his hand will cause his skin to rip off or blister. He can hold a pen and write well, but doesn’t have the strength the average child has. School says he is doing very well and they are pleased with the amount of work he can do though.

Tie would like to thanks everyone who send him things, he loves receiving post.

Update 23rd June 2012

Tie is waiting to go into hospital for a operation to extract 6 teeth. He is also really enjoying school and loves taking part in school sports.

We also had a little girl two months ago and Tie loves spending time after school with his new baby sister, Sweetpea.

Tie hasn’t had many accidents recently, which is good, but Calvin has been having accidents instead.

Tie is looking forward to having loads of days out in the school holidays and can’t wait to celebrate his 6th birthday in September, as he has requested a Mickey mouse theme.

Tie would like to show everyone a photo of his new little sister, so here she is!

Update 29th February 2012

Tie has been suffering a lot in the past month with sore blistered inner eye lids. He has managed to put on a bit of weight though and looks a little chubby in the face. Tie has also been restless at night and has managed on several occasions to rip open his legs in the middle of the night. He is coming down with a cold, which is why he has been restless, but the last couple of nights he has slept quite well thankfully.

Tie would like to thanks everyone for the generosity; he really loves receiving all letters, cards and gifts through the post.

Update 12th February 2012

We have found a product that is working well to keep Tie’s skin moisturised, it’s called Allano Hand and Body lotion. It is something that we now sell ourselves as it’s that good – it has helped one of our girls with an eczema problem and a couple of friends have told us that their psoriasis has been eased a whole lot too. We are promoting this with other parents of Eb sufferers and really think it could be of great help to many people.

Tie is now gaining weight well, which is a first. He is still really light, but we are making repeated steady progress so that is looking good for him and his skin is looking better – although he has had some infected patches, they are healing gradually.

Update 13th January 2012

Tie and siblings had a wonderful Christmas. Tie’s best present was a trip to Disneyland Paris, thanks to the Starlight charity. Tie really enjoyed meeting Mickey Mouse and friends, Stitch, Woody and loads of other characters and had photos taken with some of them. We spent two wonderful days at one of the hotels and had a wonderful time in the parks.

Since being back Tie has been poorly with his eyes – he has had them closed for the last 2 days with blisters on the inside of his eye lids. Unfortunately he has become worse today as he has come down with a stomach bug too.

We would like to thank everyone who sent cards, letters, postcards and gifts. Tie and his siblings really enjoy receiving post. We also would like to wish everyone a happy new year.

Update 5th September 2011

Tie started school full time last Friday on his 5th birthday. His class sang happy birthday to him and his teacher got him a cake. Tie is really enjoying school.

Tie misses receiving items from Betty in Australia, as she used to send Thomas books. We hope she is ok. He loves receiving postcards and gifts and letters. We would like to thank everyone who has sent Tie or his siblings something.

Tie really enjoyed the summer holidays as we went to the local farm and forest park and the beach (he loves making big sandcastles with large moats).

Tie loves having ice cream at the moment, but he can’t have it in a cone as his tongue is restricted due to all the scaring in his mouth, so he has to have it in a bowl with a spoon. Tie is now on nutritional drinks to help him put on weight too.

Update 4th March 2011

We would like to thank everyone who sent post to our kids this month; we are very grateful for your generosity.

Update 4th February 2011

Tie underwent an operation to dilate a stricture in his throat towards the end of January. He enjoyed creating Thomas the Tank Engine badges whilst he bided his time until the operation. With some trepidation he allowed an echo scan of his heart to be carried out, which showed his heart to be nearly 100% ok, which was nice to hear. Once the all clear came back on the echo scan he was booked in for the operation the following day. Tie understandably got a little upset before the operation, but it went well and the surgeon found that the stricture in his throat broke quite easily as it had been caught early. His throat was very raw after the operation and his tongue quite blistered, but once he had had a cuddle and a bit of a rest the bleeding eased and he slowly started drinking a little. By evening he was enjoying a strawberry mousse and the next day he was back to himself. Since the surgery his eating has improved a little, but this improvement has been slowed by several days of blistered eyes, which always leads him to sleep more and only snack a little.

Update 18th January 2011

Tie went through Christmas day and Boxing Day with his eyes closed, as he had blistered an eye and found opening them too painful. He felt all his presents with the help of his sisters, only to rediscover them 3 days later when he was able to open his eyes.

Tie was due to have an operation on his throat to widen it in December, but unfortunately he fell ill the day before forcing the operation to be postponed. The new date is at the end of January, so hopefully we will have some positive news to report on that soon.

Tie loved receiving lots of Christmas cards and he had many reindeer friends who wrote him lovely letters. I would like to thank everyone for their considerate gifts for Tie and his siblings; they have given them great pleasure.

Update 5th December 2010

Tie had a good month in November, with only one week away from school with a cold. We did see a few days when he had blistering on the inside of his eyelids, causing him to have a few days with his eyes closed, but on the whole it was a good month.

Update 11th November 2010

Tie had a very tiring trip to Birmingham children’s hospital this month and underwent a barium test to x-ray his throat for signs of narrowing. Initial results seemed positive but further scrutiny by the team at Birmingham found that his throat has narrowed and they are now looking to book Tie in for an operation on his throat to widen it. He also had his eyes tested! They found that he has 20:20 vision, but he also has scratches on his eyes from previous blistering. Only time will tell us how his eyes will continue to cope with his condition, but it is a possibility that repeated damage may lead to blindness. His belly has been hurting a little more this month, but his special milkshakes (containing Movicol) have helped in preventing further internal damage. It took Tie a week to recover from his trip, but now he is back to his old self.

We received tickets to Legoland from Post Pals and in half term we all visited the park. Despite the chilly weather everybody loved the day out and had lots of fun. Thank you Post Pals.
I would like to thank everyone for thinking of Tie and his siblings and for always putting a smile on their faces!

Update 10th October 2010

On a short weekend break in August (the first in four years) Tie suffered a fall down some steps and opened up his left side, hand, side, knee, leg. But after an hour of fixing him up, a rather more tired Tie was back on his feet with a smile on his face.

Tie had his 4th birthday on the 2nd October and also started 2 hours a morning at nursery. He has a carer that accompanies him each day and he is enjoying his time there. He did have a small accident that saw him blister both hands and knees by falling over, but after 5 minutes he was up and about again. It looks as though Tie will be having a further test in October to check to see if his throat has narrowed with scarring as the last test was inconclusive.

We are very grateful for all the kind letters and cards, Tie and his siblings love reading them, and thank you for the gifts too. Special thanks to Marjolijn from the Netherlands, everybody loved your kind gifts.

Update 19th August 2010

July started off not too badly for Tie, with the mild summer and our three air conditioners cooling the house. However, a weight drop had been picked up and his appetite was hindered by episodes of choking on food when feeding. So the month turned in to a battle to stop the weight loss and we just about managed it with the help of chocolate doughnuts! In August Tie is booked in to have a Barium meal to see how his throat is, they suspect that it may have narrowed over the last few years with scaring and that Tie may need an operation to widen it! The test will show if this is the case.

Thank you to Sarah, Henry, Mai & Christine for their fantastic cards. Many thanks to Betty, Susan and everyone for their lovely letters. Special thanks to Alison, Cat, Samantha, Jayne, Jack & Erin, for their very thoughtful gifts which helped Tie through some difficult days and also put smiles on the faces of his sisters.

Update 10th July 2010

Tie has had a bit of a rough month with stubborn infections on his legs, which we now hope are finally healing. He also had some nasty damage to his left hand one day when out walking with his dad – he tripped over and sadly as his dad was holding his hand at the time, the skin of his hand was traumatised severely as his hand slipped leaving his skin behind. After many brave minutes, his dad had replaced as much of the original skin as possible and wrapped up his hand in dressings to protect it. I am happy to report that Tie’s hand is now almost completely healed and has retained full function , in fact, his specialist nurse commented this month that his hands appear to have less webbing between the fingers than before – which is good news.

Of course there is always some bad to balance out life, and sadly Tie has continued to choke on his food more and more frequently. This really upsets his throat and causes him to bring up blood. Due to the worry that his throat may have narrowed due to damage, his nurse will now arrange for him have a barium test performed to see if his throat has narrowed. If it turns out that it has been narrowed, then we have been reassured that there is an operation they can do to expand his throat, by basically inflating a balloon in it! With no great surprise, this news of his increased choking also comes with news of a weight loss of 3lbs. So, we are once again focused on increasing his nutrition levels and food intake.

On the 23rd of June, coinciding with our 12th wedding anniversary, Tie’s baby brother, Calvin, was born. Calvin has EB too, but thanks to the lessons Tie has taught us along with the co-operation of the midwife team at the hospital, Calvin was born with damage limited to his left foot and of a good weight. Since birth, he has continued to do well with little damage occurring – he has certainly had the best start to life that we could have prayed for. We had always said that we would have no further children with EB, due to the extensive affect this severe form of the condition has on them, but as diagnosis was not made until very late in the pregnancy, after much heartache and tears over what may be, we chose to make plans on how to manage the situation to the best of our abilities and feel we have been truly blessed with our second brave soldier.

Tie had a very busy month with also visiting the school that he will be attending for two hours a day come September. He found it a little overwhelming with so many other children about and tired quickly. However, we feel that due to the interest the school has taken in how to provide the best support for him and the fact that he will have his own carer watching over him whilst he is in school, that he will be ok and settle in nicely come September.

Many thanks to everyone for the gifts received this month, Tie and the girls loved playing with all the craft items and toys.

Post Pals provides such a boost for our son, even on days when he cannot open his eyes, he still has a big smile on his face when the postman brings a letter for him. He absolutely loves opening his letters and cards and looking at the pictures. He can’t read yet, but loves us to read them out to him. Thank you all for caring so very much.

Update 11th June 2010

Tie has had a good month on the whole. He only had a couple of days with eye troubles. He has suffered a bit with a sore throat, but it hasn’t impacted on his diet too badly and it hasn’t developed into anything too dire for him. He has had more blistering with the heat and a couple of weeks of colds made his skin more prone to damage – but the air conditioning stopped the heat from affecting him too badly.

Many thanks to everyone who sent a special gift for Tie or one of his siblings this month, especially to Betty and also to all the children at Letham Nursery.

Update 19th May 2010

Tie has really enjoyed receiving his special post this month. With suffering from a stomach bug throughout, he has been very tired and often very sore – even on days when he couldn’t open his eyes he was very happy to hold his post and have them read to him.

A big thank you to everyone who has sent a card to Tie, he really loves receiving them, especially when he is feeling low. Many thanks to everyone, especially Megan from Horndale County Infant & Nursery School, for her letter and picture – Tie really liked your picture.

Update 8th April 2010

Tie has had a reasonable month, with no major injury. He has suffered a few days in the dark with his eyes closed and sore though and also had a few tummy troubles which did reduce his diet a little at the time. He is currently fighting off a couple of infected wounds on his legs which have been hindering their healing, but they seem to be getting better slightly, so we hope they will continue to improve and heal soon.

A big thank you to everyone who has sent a card to Tie, he really loves receiving them – especially when he is feeling low. A very big thank you especially to Jessica and Jade for all the books we received last month. Everyone really loved their books.

Update 12th March 2010

Tie has been fairly ok in the last month. He has had a damaged throat on occasion making swallowing anything an impossibility which caused him great distress, but each occasion settled down within a couple of days. He suffered a minor accident which left him with no skin on two toes and damaged/blistered skin around the area on his foot. The incident really shook him up and he was shaking with the shock of it, but once we had dealt with the damage as best we could, he calmed down and made some craft pictures with us, which really took his mind off his foot.

A recent day trip to hospital for review has showed that he is still gaining weight and currently doing well – we are waiting for blood tests to come back to see if any increase in iron or any other medication is needed.

We would like to thank everyone for the gifts they have sent. Everyone has been thrilled with the books they received in February and Jessica and Jade in particular have enjoyed their gifts and Tie has had a lot of new stories read to him each night. Thank you all very much for letting Tie and his sisters into your hearts.

Update 10th February 2010

Tie has been having a little trouble eating lately, his appetite has been a little shaky, not of great concern, but he has hurt his throat swallowing food a few times and it has led him to eat less as his throat healed each time. It is a worry to us as most kids with Tie’s form of EB have gastric tubes fitted in infancy, as throats tend to narrow with blistering and scar tissue making swallowing difficult. We hope that Tie won’t need one but only time will tell. His weight is still quite reasonable and we hope he will regain his appetite soon.

I would like to thank everyone who sent a smile package to my girls, they loved them very much. It seemed like everyone had really taken their time in thinking what our girls would like and got the packages just right, making big smiles appear. Many thanks.

Update 10th January 2010

Tie had a fall from a dining room chair on the Monday before Christmas, so the brave little fella went through Christmas with a sore face and some internal blisters, but he didn’t let them slow him down much and enjoyed himself. When he fell he damaged the skin on his forehead, causing blistering across it. He also took the skin off his chin and his nose and blistered his hands, elbows and knees!

He has healed up now and has started 2010 with a good appetite and a reasonable weight. As usual we are hoping for the best for Tie, and even though we know that 2010 will be a busy year for him full of new challenges like starting nursery in September, we know that he will face each challenge with a smile and a determination like no other. We are very proud of him.

We were absolutely amazed by how many people remembered us on their Christmas card list and many thanks to everyone who sent a card. Again, a big thank you to everyone who remembered Tie and his sisters this Christmas by sending post. We have never seen so many gifts come via post before and Tie and his sisters absolutely loved opening them all. Many thanks.

Update 3rd December 2009

Tie has had a good month, with no major injuries and only a few days with his eyes closed.

The kids will absolutely love their gumball machine when they unwrap it at Christmas , thank you!

Post Pals is fantastic, there is nothing that lifts your heart like seeing your child have a smile on their face!

Update 31st October 2009

Tie had another month of eye sores/infections that often left him with closed eyes a lot of the time. He has also had a number of skin rips and blisters all over. At the moment we are waiting for his current bout of blistering to ease off to give him a better chance of healing up.

He absolutely loves his post, many thanks to all his post friends. Tie loved his Iggle Piggle Doodle toy, he won’t put it down and he even doodles on it when his eyes are blistered and he can’t see! Everyone loved the Halloween toys that came through too.

Update 30th August 2009

Tie has had a better month this month as his eyes have been far better, suffering a lot less blistering thankfully. He has suffered a bit more than usual with blistering on his feet, and his lower back has remained raw, but the worst time he had was in mid August when he asked us to lance a blister or,”bubble” as Tie calls them, and when we looked at his belly where he was pointing there was no sign of any damage – the blister was internal in his bowels i guess, and that caused him a lot of pain over a couple of days. At the moment he is fairly ok and thrilled that his 3rd birthday is just around the corner on the 2nd September!

Thank you to everyone, it is nice to hear from people that care. A big thank you to those who remembered Jade’s and Adelle’s birthdays and it was really nice that everyone received a gift this month , they all loved their special lollipops! Thank you.

Update 3rd August 2009

A lot of this past month has seen Tie passing his days with his eyes closed and in a darkened environment for days at a time, whilst blisters on his eyes and the inside of eyelids healed. Touch wood he has had a few days without eye blisters now and it is feeling like he is over them for a while, or until he rubs his eyes again!

He is still eating okay and receiving post has been putting such a smile on his face! Many thanks to everyone, especially for the party goody bag and the Roary book that was sent, he absolutely loves it!

Update 11th July 2009

Sorry we couldn’t make the Post Pals party, but Tie has been finding it hard going with the heat and the trip would have proved too much for him. Thank you for sending him a goody bag though.

I would just like to thank all of Tie’s friends for cheering him up this last month. He has had a lot of blisters, injuries, painful insides, and has been stuck in the dark a lot of the time with eye blisters. Even when he can’t see though, he still loves holding and feeling his post. Thank you everyone for helping the postman put a smile on my boy’s face.

Update 30th June 2009

Tie has had a few quite bad days this month. He fell over whilst holding a spoon in his hand and it ripped off the skin from his left hand, and an hour later he fell again and took the skin off his left knee. These wounds have healed now though and he is back on his feet, but he is finding the heat a little much and tiring, so he is spending most of his time in the house in front of the air conditioning unit. He has had a change of antihistamine to Vallegan syrup for relief of his night-time itching and he has just had a stronger painkiller prescribed for his dressing changes (I’m not sure of the name, but I think it is called Midazolam). It is theatre medicine and we are waiting for the prescription to come though.

Many thanks to all of Tie’s post pals. Tie especially loved the cars card that he received and the Bob the Builder pop up card. He also loved the cuddly koala bear that turned up one day. Post Pals is fantastic and it brightens Tie’s mood when something nice turns up in the post for him.

Story written 2007

Seren was suspected to have Cystic Fibrosis from 22 weeks of pregnancy, as her bowel was echogenic on ultrasounds. At birth, a blood sample was taken to test her for Cystic Fibrosis genes and she was found to have CF. Her treatment started the following day at the hospital. She was started on prophylactic antibiotics, Flucloxacillin, Creon capsules to digest her milk for her, and daily supplements of a multivitamin and extra Vitamin E. At four weeks old she began a thrice daily regime of chest physiotherapy to clear the sticky mucus from her lungs. At sixteen days old, I had to stop breastfeeding and start giving Seren SMA Gold formula, as she was drastically losing weight. She took well to this and did start to gain weight, but by 7 weeks old, she had dropped from the 50th centile at birth, to the 9th centile, so she had to start SMA High Energy, which worked wonders. In her first year she had a lot of throat infections which made her poorly and then at 13 months, she grew her first bug on a cough swab, Haemophilus Influenzae, which she received a course of extra antibiotics for.

She then had a much better second year, and stayed healthy with good weight gain until around her second birthday, when we had to wean her off the SMA High Energy and onto cow’s milk. This caused her weight to drop and we struggled to get her weight up. Then at 23 months, she grew a bug called Pseudomonas and had to start some very strong oral antibiotics which made her ill, and a nebulised antibiotic as well. The treatment worked and she cleared the bug well and hasn’t grown another bug on cough swabs since.

She finally, for the first time in her life, discovered an appetite in autumn of 2004. She finally started gaining weight nicely and since then, her weight has usually been good. We have to work hard though to keep it at an acceptable level, frying as much of her food as we can, making sure she eats lots of high fat foods such as crisps and chocolate, and trying to get her to drink plenty of milk.

From Christmas 2004 to April 2006, her health was very good. Her CF was very well controlled and apart from the occasional constipation, she had no real problems. Then in April she started full time school and her asthma, which had previously been very mild, needing inhalers only once a month or so, suddenly went haywire. Through the summer and autumn, Seren started needing inhalers more and more frequently and so in October, she was started on a Becotide inhaler in addition to her Ventolin. This still wasn’t enough and so the Becotide dose was doubled last week and she has been struggling to come to terms with having asthma as well as Cystic Fibrosis and hates her constant cough.

At the moment, her medications are as follows: Ventolin inhaler, 4 to 6 puffs as necessary. Becotide inhaler, 4 puffs twice a day. Fish oil capsules, 2 per day. Vitamin capsules, 1 per day. Vitamin E liquid, 1 ml per day. Flucloxacillin capsules, 2 per day, Creon capsules, 3 with snacks, 4 with meals, Nasonex spray, 1 puff in each nostril once a day. At the moment, on an average day, Seren takes 22 tablets and has at least 8 puffs of inhalers, hence her struggle to adjust.

Update January 2014

Seren is now in High School and seems to be settling in well. She is going through a period of transition, shedding her childhood persona and discovering the ‘new her’. Moving up to High School has been challenging for her, but she has made friends and the school are very supportive of her CF needs, and have given her great support in her numeracy struggles. She auditioned for the school Christmas production and was rewarded with a solo to sing! She did an amazing job and was the youngest soloist to perform.

Seren is still struggling with compliance issues with her CF treatments and is currently under the weather, but the High School are keen to help out and support her by doing treatments in school with her if needed, and she has access to a CF Psychologist who is working with her.

Her gastrostomy, which was fitted 22 months ago, has made a huge difference to her nutrition and general health, and she has grown a lot in that time.

Seren has grown and changed so much during her 6 1/2 years with Post Pals and it has been quite a journey. We are so grateful to all those who have supported her (and us) along the way, with cards, postcards, letters and gifts. You have made some difficult years a little easier to muddle through, and we are so touched that you have all supported her and invested in her journey, willing her onwards, encouraging her. She is keen to develop her independence even further in the future. Thank you to everyone who has supported Seren. We wish you all the very best for the future.

Update 16th July 2013

Seren has had a fairly stable few months. There have been a few ups and downs, like the bad cough which she had through most of April, which required a three week course of Ciprofloxacin, and caused her lung function to drop to just 59%. She gradually picked up over the three week course and her lung function climbed to a high of 79%. By mid-May her cough was back and she was reviewed at the hospital, but we were relieved to find that her lung function had only dropped to 76%. She was prescribed a high dose course of Augmentin, two tablets three times a day, and this seemed to help eventually after a couple of weeks. Seren had CF Clinic on 7th June and her lung function had dropped a little to 75%, due to particularly poor compliance with her CF treatments, so she had to have a chat with the CF Team psychologist, to try and encourage her to try a little harder to keep herself well. Apart from that, the doctors were pleased with her, as she has grown a lot recently, taking her up to the 75th centile for her height. She has also gained some weight, going up to 35.2 kgs, but because of her gain in height, she’s only on the 25th centile for her BMI, so we need to get some more weight on her. On 20th June, she had her first ever glucose tolerance test, to check for diabetes mellitus (a complication of CF) and she passed with flying colours. On 27th June, she had her chest x-ray and abdominal ultrasound, ready for her Annual Review which is coming up on 2nd August. We will receive the results of those tests on the Annual Review day.

Seren has also enjoyed a sleepover at church, and we were very grateful to the church leaders for taking on Seren’s medications and overnight feed for us, to enable her to take part. She also attended a two night school trip to Ringsfield Hall in early July and although the teachers didn’t feel comfortable to take on the overnight feed (so she skipped 2 nights) they did all her daily treatments and medications for us, to enable her to take part. She has also enjoyed Sports Day, performed as narrator in her school production of Oliver, passed her SATS with a Level 4 in Maths and Science and a Level 5 in English, and received a glowing school report.

She started July with a bad cold and cough, but she seems to have mostly shaken that off now, and is enjoying spending a week at High School, in preparation for her move to high school in September. She’s settling in well and is happy with her new school. She also enjoyed celebrating her 11th birthday last week, with a meal at Harvester, a shopping trip with her grandparents, and a trip to a local theme park with her school friend and Dylan.

Here’s hoping for a happy, healthy summer!

Thank you to everyone who has sent Seren a card or a postcard recently. She very much appreciated all the Easter cards, birthday cards and general cards. She’s loved receiving some fantastic Dr Who postcards too! In particular, she would like to thank the children from Nottingham who sent 24 handmade cards for her birthday, she was very touched! Thank you to Gill, Libby Snow, Neve, Jasmin, Georgia, Harriet, Jules, Valerie, Audrey, Georgia-Mari, Wendy, Sian, Tabitha, Maria & Michael, and Northwold Primary School for all the great letters! Seren loves reading them! Thank you to whoever sent the horse book (it came from Sutton Coldfield), thank you to Kitty for the colouring book and sweets, thank you to Lisa W for the sunflower seeds, thank you to Denise C for the Jacqueline Wilson activity set, thank you to Lisa for the recorder, glow stick bracelets, bubble gum water pistol, bath gel and chocolate, thank you to Harriet for the horse facts book, thank you to Lisa for the bead bracelet, thank you to whoever sent the pewter horse necklace, thank you to Danielle W for the beanie owl, thank you to Jenny for the stickers and magnets, thank you to Becci W for the cat novel, thank you to Summer for the 1 Direction keyring, thank you to Natashja for the stickers, thank you to June for the stickers, sticky notes and holographic card, thank you to Mary Kayetlin for the toy horse, thank you to Ruth, Davina, Melissa and Simone for the medal, thank you to Sasha and Aisha for the bracelet, thank you to whoever sent the Chinese lantern kit, and thank you to Natashja for the horse drawings tips book.

Update 10th April 2013

Seren had a pretty good December, apart from finishing off the month with a bad cold, but it didn’t stop her enjoying spending post-Christmas and New Year time in Wales with my family! She didn’t eat much though, she certainly didn’t over-indulge at Christmas! Her appetite didn’t improve in early January and she was pretty naughty too! She didn’t want to do her CF treatments and so by the time she got to CF Clinic on 14th January, she had an intermittent cough. At CF Clinic, her weight was stable, despite her poor appetite, thanks to her gastrostomy feed, but her lung function had dropped. Her FVC was 85% and her FEV1 was 76%, down from 83%. Her FEF50 was 63%. The doctor wasn’t happy with her nutrition levels or her effort at taking care of herself, so they gave her a big talking to. They also agreed to her having a mask for her nebuliser, rather than a mouthpiece, to encourage compliance. February was a better month, healthwise, she was pretty stable apart from a migraine mid-month. She also made huge leaps in her maths work at school, jumping from her old level of 2B up to a 4C!

On 1st March, she went back to CF Clinic and she had grown 1 cm and put on nearly a kilogram and her lung function had improved. Her FVC was 100%, her FEV1 was 79%, and her FEF50 was 74%. The doctor was very pleased to hear that she had been more compliant in her treatments and the results showed in her lung function tests. Her nasal polyp which they discovered in November was much improved and so the doctor reduced her Nasonex to once per day and reduced her Colomycin nebuliser to once per day as well, in order to make the mornings easier for her.

We then had some more bad behaviour and non-compliance from her during the rest of March, but her behaviour had improved by Easter, and she very much enjoyed spending Easter in Wales with my family and then we headed Eastwards to Spring Harvest at Butlins. While we were there, she seemed tired, and didn’t eat too well, but it was only when we were traveling home on Sunday that we realised why.

She developed a sore throat and was very tired and had a poor appetite on Sunday evening and then overnight she developed a chesty cough. This got worse through Monday, and again, she had a very poor appetite and was lethargic. When she hadn’t improved on Tuesday, I called her CF Nurse and arranged a review on Children’s Ward. She was weighed and had lost half a kilogram and when she did her lung function, her FVC had dropped to 76%, her FEV1 had dropped to 59%, and her FEF50 had dropped to 54%. By far her lowest results ever. The CF Nurse gave her a drink and let her rest and then she tried again about half an hour later and managed to improve her FEV1 to 65%, but that is still much lower than her previous lowest of 72%. She was then seen by the doctor, who said her chest didn’t sound too bad, but he ordered a cough swab done, sent her for a chest x-ray and started her on some extra antibiotics (on top of her regular Augmentin and nebulised Colomycin) to treat the infection.

This morning, he called to say that the x-ray showed no major changes from her last x-ray (last summer) which had shown decline from the year before. Her cough swab won’t be back until at least Friday, and the CF Nurse has arranged to re-check her lung function on Monday to see if it has started coming back up. Today she is feeling pretty poorly, her cough is horrible and she’s feeling quite breathless and it’s making her tearful. She’s got lots of revision to do for her SATS though, which are coming up in 5 weeks time, so she’s trying to revise today and rest. Hopefully the new antibiotics will kick in soon.

Thank you very much to Gillian for the lovely Christmas card! Thank you to Andrea, Rob & Jaiden, 1st Brantham Brownies, whoever sent the Valentines cards, Natashja, Izzy P & Sayaka, Alison, Karen (Sami), Sophie, Becci Willetts, Hanna R, Rissy & family, Julia Daisy & Daniel, Maria, Kirsten, Chester & Wendy, and Annie for the fabulous cards! Thank you to Lyndsay, Kati & Ronja, Bron, Becky Rideout, Viks, Dee, and Wendy & Chester for the lovely postcards! Thank you to Sophie, Natashja, Izzy P & Sayaka, Isla Ramsay, and Kati for the lovely letters! Thank you to Claire Connon, Tez, Sarah Sweeney, Kati K, Lorraine B, Helen T, Vickie, Jenny Mathiasson, Kate Dalton, Anastasia, and Dawn Smith for the lovely Christmas presents you sent for Seren. She absolutely loved them. Thank you also to whoever sent the fairy book nameplates and the horse necklace. Thank you to Andrea, Rob & Jaiden for the nail art kit. Seren has been having great fun with this! Thank you to the 1st Brantham Brownies for all the pictures you drew. Thank you to someone who sent Seren a picture. Thank you to Natashja for the horse necklace. Thank you to Izzy P and Sayaka for the pictures. Thank you to whoever sent Seren the horse pin badge. Thank you to Julia, Daisy & Daniel for ‘The Horse Road’ book. Thank you to Kati & Ronja for the photos and picture. Thank you to Becci Willetts for the strawberry charm. Thank you to Hanna R for the pins kit. Thank you to Isla Ramsay for the ‘How To Draw Horses’ book and picture. Thank you to Rissy & family for the bracelet. Thank you to Becky Butler for ‘The Summer Riders’ book. Thank you to Annie for the stickers. Thank you to whoever sent the pampering kit with massage oil etc, Seren loves it!

Update 1st December 2012

Seren has had a fairly settled few months. She had her yearly CF review in early July, and she was 138.5 cms tall, weighed 31.3 kgs, putting her BMI on the 41st centile, her SATS were 97% and her cough swab was clear. Her FEV1 lung function was 83% in May, so we were hopeful that it would have climbed even higher by July, but unfortunately, it had dropped to 74%, and her FVC was 84%. The doctors were concerned by her x-ray which showed lots of ‘tramlines’ in the bottom of her right lung, the top left lung still showed an area of sticky consolidated gunk, and there were lots of ‘significant obvious bronchiectatic changes’. Her ear nose and throat examination was okay apart from inflammation of the nostrils, and her abdominal examination was fine, as were her blood results and abdominal ultrasound, but the consultant was very concerned about the state of her chest and her low lung function. She admitted to not co-operating with her chest physiotherapy or her daily nebulisers, or wanting to cough much, so the doctor agreed to take her off the hated hypertonic saline nebulisers and put her onto nebulised Colomycin, an antibiotic mixed with normal saline instead, which would hopefully clear her chest a bit and prevent so many IVs being needed. He said she would also benefit from Mannitol when it comes out in this country, a dry inhaled powder which clears the lungs.

On 8th of July, Seren came out in a cold, and on 9th July, she started with a chesty cough, with chest pain as well, and so we took her to the hospital for a check up after giving her painkillers and inhalers. Her chest x-ray showed no improvement from the previous one, so the nurses supervised her test dose of Colomycin and used that to treat the chest infection along with a course of Clarithromycin. She tolerated the new nebuliser very well, which was a huge relief.

On 12th July, Seren was still very tired and tearful thanks to the chest infection, and unfortunately, her Clarithromycin dose blocked her gastrostomy tube, so she had to have it replaced on 13th July, which she wasn’t very happy about, as she finds tube changes rather painful thanks to persistent over granulation around her tube site. She didn’t eat much on the 13th, and was still tired, but she was determined to have fun, as she celebrated her 10th birthday on 11th July and on 13th, she took two friends bowling and had them over for a sleepover afterwards. Needless to say, we had a very tired, chesty girl on 14th July! She was still tired by Sunday 15th July, so she missed church and a dance performance she was to have taken part in as well.

On 22nd July, she fell and hurt her wrist, and when it was still very painful two days later, we took her to A&E for an xray. Thankfully, it was just soft tissue damage and it healed eventually. On 30th July, Seren enjoyed spending the week at Holiday Bible Club at church, and then on 3rd August, we travelled to Wales to stay with my family, and on 4th August, Seren had the great honour of being bridesmaid at my friend’s wedding! She had a beautiful outfit to wear on the day, and had a great time enjoying the day’s celebrations.

On 12th August, Seren went back to horse riding for the first time since her gastrostomy operation! She really enjoyed it, although sadly, we haven’t been able to afford too many lessons or rides for her this year, as money has been very tight. On 13th August, Seren had her physiotherapy annual review and passed her exercise test easily. On 20th August Seren went crabbing for the first time and really enjoyed it, and then at the end of August Donna’s Dream House treated us to an amazing holiday in Blackpool. If you’d like to see what we got up to, feel free to watch our photo slideshow at … http://www.onetruemedia.com/otm_site/view_shared?p=118a3e3c3a1b6c29fbbc718&skin_id=701&utm_source=otm&utm_medium=text_url

On 5th September, Seren went back to school, to start Year 6, and unfortunately, went to school full of a cold. By 7th September her cold had turned into a nasty cough, but at CF Clinic, she had grown 1.3 cms, gained half a kg, her SATS were 98%, and her FVC had climbed to 91% while her FEV1 had climbed to 80%, so the consultant was pleased and made no changes to her treatments. By 9th September, she still had her nasty cough, and on 11th September, Seren was sent home with a very nasty cough and a bad migraine, which I had to give her Imigran for. We went for a review at the hospital the following day, but the consultant didn’t make any changes to her treatments.

On 15th September, Seren and I signed up to do a 2.5 km run for the CF Trust, and we started our three times a week running training on 17th September. It was very hard, but we did it!

On 28th September, Seren still had a very wet cough in the mornings each day, so she had a swab done, but it didn’t grow anything, so we were still unsure as to what was causing her cough. I asked for her to be reviewed again on 3rd October when she was still coughing badly each morning, and her lung function had dropped again to an FEV1 of 72%, so her consultant decided to increase her Augmentin tablets from twice to three times a day. I wasn’t happy at how laid back her local consultant seemed to be about her poor lung function, and so I asked to be referred to the specialist from Cambridge in the near future.

Her cough didn’t improve through early October, but we were able to continue with our training, and on 13th October we spent the day at Legoland, and then on 14th October, Seren and I ran 2.5 kms for the CF Trust!!! She did a great job! However, her overnight and morning cough were incredibly wet, which was a great concern to us.

On 16th October, Seren had her flu jab, and then on 19th October, I had to go into school for a big talk with her teacher because she was still being very uncooperative for her CF treatments every morning, which was making everyone else late and causing lots of disagreements. Her teacher suggested having a tick off check list in the mornings for Seren to follow to make sure she does everything she is supposed to.

Seren was seen again at the CF Clinic on 22nd October, her FEV1 had increased to 84%, her highest score this year so far, but she had crackles in her lower left lung, and so the consultant diagnosed her overnight and morning cough as the start of a chest infection, and prescribed three weeks of Ciprofloxacin tablets.

Late October and early November were fun times, with a school trip to Gressenhall for a Victorian day, carving pumpkins with Dylan and Dad, and going to see some fireworks on the sea front.

By early November, we were seeing the extra maths classes she has been taking at school starting to pay off! Seren is VERY behind in her maths skills (but is way ahead in all other subjects) and has been receiving intensive intervention for a month or so, and she is finally starting to make progress! She is able to tackle more and more maths problems, and is starting to cope better with the stress of having maths homework to do at home!

On 12th November, Seren saw the CF Specialist from Cambridge, as even with three weeks of Ciprofloxacin, her overnight and morning cough wasn’t improving. Her lung function was stable at 83%, which was good, but the specialist found a massive polyp obstructing her left nostril, which is probably causing her overnight cough and morning cough by giving her post nasal drip, so he prescribed Nasonex nasal sprays for her nostrils. He also prescribed 3% saline for her to nebulise before each physio session, as he said her poor drinking habits (she rarely drinks much in the day at all, her overnight feed of 500 mls is usually most of her daily fluid intake) are causing her to still suffer a little constipation and will be making her lungs very dry and causing the gunk to be too sticky to cough up, so she really needs to get fluid in there. She tolerates it better than the hypertonic saline though, so it’s a start!

Seren is very excited that we’re now into December, and is looking forward to putting the Christmas decorations up, opening her advent calendar, and had a great time seeing the Coca Cola Truck at our local Asda the other day. Here’s hoping for a healthy December, as the last few months have been absolutely exhausting!

Thank you so much to everyone who has been kind enough to send cards and postcards to Seren over the past few months, she very much enjoys receiving them, opening them and reading them! Thank you to everyone who has sent Seren a letter or note over the past few months, she loves to hear what is going on in other people’s lives! Thank you so much to everyone who has sent Seren such lovely gifts, in particularly the gorgeous quilt which she always sleeps under, and her amazing signed Stacy Gregg books! She emailed Stacy to say thank you and received an email back as well, which made her day!

Update 1st July 2012

Seren had a tough time around the time of her operation.  She had over two weeks of IV antibiotics before her operation, due to a nasty chest infection and poor lung function, which hadn’t improved over the course of the IVs. Just before being admitted to hospital for her operation, one of her cough swabs came back growing the fungus Aspergillus, so she had some anti-fungal tablets for that, which did seem to help her chest a little.

The day of her operation, 21st March, she was incredibly brave. We checked into the hospital in the morning and she went down to theatre around lunchtime to have her gastrostomy fitted. She came back up to the ward at around 4pm, after spending quite a while in recovery, because she was struggling to hold her oxygen levels on her own. Initially when she came around from the anaesthetic she was okay on 5l of oxygen, and then when they stopped it and prepared to move her back up to the ward, her SATS (oxygen levels) dropped significantly, and they had to put her back on 2l of oxygen to transport her up to the ward. She was quite groggy and seemed to be in quite a bit of pain.

Every time we tried to take the oxygen off her over the next four or five hours, her SATS dropped straight back down, but eventually, by bedtime, she was holding her own without extra oxygen. She was a little hungry in the evening, and so she sucked a few chocolate buttons and had some sips of water. They started using her tube that evening for small boluses of water, and then small boluses of feed, and all went well.

The following day, she kept her SATS up nicely, but REALLY struggled with managing her pain. The nurses encouraged her to get out of bed and use the bathroom, but that made her operation site leak a lot, which got very messy, and she would sometimes get ‘stuck’, in so much pain that she couldn’t move an inch.  In the end, paracetamol and nurofen weren’t enough and they had to give her a dose of morphine, which helped eventually. They also gave her a daytime tube feed, as she wasn’t eating anything. That evening, she had a little bit of a sandwich, and had her first overnight tube feed too.

Friday, the following day, she was supposed to have been discharged, and the surgical team were happy with her progress and happy to discharge her, but the CF team weren’t, because she wasn’t managing her pain very well, was barely mobile, and chest physiotherapy was way too painful for her, but her chest was very, very noisy and congested. So the CF Consultant decided to keep her on the IVs over the weekend and review her chest symptoms and mobility on the Monday evening.

Seren was so brave, it was her first operation, and she ended up spending six days/five nights in the hospital, and absolutely everything was a challenge for her; learning to cope with her gastrostomy and it leaking all the time all over her clothes, the lack of privacy, eating, drinking, all the extra medicines, all the pain, the physiotherapists who did their best to push her into walking further, mobilising more and having some forms of chest physio, and being away from her family and friends. I stayed in with her, of course, and Adrian and Dylan visited each evening, as did other family members, but she missed everyone terribly.

Thankfully, she was able to be discharged on the Monday evening, and things improved quickly after that. Her pain was far more easily managed after about ten days and she gradually got more and more mobile, and her appearance quickly became more healthier as she had more and more overnight feeds. She managed to go on her Make A Wish trip to London just before Easter, and she looked like a different child by the time Easter actually came, and just after Easter, she was strong enough for a trip to York with me, and she walked EVERYWHERE! Before her operation, just walking to school was too much for her!

By the May CF Clinic, she had gained 3.5 kgs, and had gone from the 7th centile for her BMI, up to the 28th! In just six weeks! The doctors were so pleased, as she had also stopped needing any form of laxatives, no senna, no lactulose, nothing, thanks to her fibre-filled overnight feeds! We were hoping her lung function would also have increased, along with everything else, but unfortunately, it had dropped to 78% from a post-op 83%. We have no explanation for the decrease, but by the end of May, it had risen slightly to 83%. We are hoping to get it up nearer to 100% again in the future, but for now we’re doing all we can.

And now, Seren is doing really well most of the time. She has gained at least 5 kgs, and is up to at least the 42nd centile for her BMI. She is looking so much healthier, and her face is full of colour. She still has the odd chesty cough or episode of chest pain, but she hasn’t had any tummy problems since a few days after her operation, and she has got SO much energy! She is doing PE at school, charging about at parks, and going to her dance class regularly. She hasn’t quite gone back to horse riding, because of having to wear her chest protector over her gastrostomy, which she has experienced some problems with due to over-granulation, but we hope that she will be able to go back to horse riding very soon.

Seren has her Annual Review/MOT on Friday, so I’ll be able to update more on her current health after that. Fingers crossed for good news! We should get the results of all her blood tests, her x-ray analysis, her abdominal ultrasound results, plus her current height, weight and lung function stats, as well as cough swab results.

Thank you to all the lovely people who have sent Seren cards and postcards recently, she has loved them all! They either sit on the mantelpiece, or on the shelves in her bedroom, or on her pinboard! Thank you for all the get well cards she received during her hospital stay and while she was recovering from her operation. We pinned up those we received during her hospital stay on her pinboard in her hospital room, and they really brightened the room up! Thank you to everyone who takes the time to write a letter to Seren, she loves to curl up and read them, to hear your stories. Thank you to everyone who has sent Seren gifts recently. She has enjoyed receiving each and every one of them! Recent highlights include the fabulous mechanical monkey from Kim, and the Odd book from Vickie, which she is currently reading. More specific thank you’s are a bit tricky, as she likes to take her parcels and letters up to her room to open them now she’s older, and she isn’t the best at keeping notes of what she’s received from whom! But thank you to everyone, she very much appreciates all her post.

Update 13th March 2012

Seren has had a difficult few months. In December she had a 16 day course of IVs for a nasty chest infection, during which her weight dropped from 27.5 kgs at the beginning of the month, to 26.7 kgs at the end of the month. She also had an allergic reaction to one of the IV antibiotics, Ceftazidime, halfway through the course, which was unpleasant for her. When she was reviewed at the end of the course, her lung function had improved, going back up to around 91% I believe, but her weight was very poor and despite her lungs having improved, she didn’t feel any better in herself. So it was suggested that as she was finding it so very difficult to eat, and to gain weight, that she have a gastrostomy fitted to feed her overnight.

Seren struggled through Christmas and New Year, feeling very tired and lethargic, struggling to eat and struggling to cope with all her CF treatments. Everything was getting on top of her. And so in mid-January, the decision was made to refer her to the paediatric surgeon for a gastrostomy. She had CF Clinic again in early February and her weight was back up to 27.5 kgs, but her bowel was very blocked, and although her lungs sounded clear her lung function was down to 79% again.

Seren saw the gastrostomy surgeon on 7th February and thanks to double doses of lactulose clearing some of the blockages in her bowel, her weight had dropped again to 26.8 kgs. The surgeon agreed to fit a mickey button gastrostomy for her over the next couple of months. We were originally given a date of 4th April. Through February, Seren’s health declined even further and she stopped going to her weekly dance classes and was always too tired for her riding lessons at the weekend. She also began to develop a wet cough again.

By late February, she was really struggling with a lot of chest pain, stomach pains, and feeling generally unwell. She was sent home from school one day with severe stomach and chest pains, and although a hot water bottle and some pain relief got rid of her stomach pain, her chest pain continued to be a problem, and she was recessing on her right side. We took her to the hospital, where her weight was 27.0 kgs, her bowel was blocked again, and because of the chest pain and recession, they were concerned she might have a pneumothorax (air leak in her lung) or another chest infection. She had an x-ray which was fairly inconclusive, so they put her on oral Clarithromycin for 7 days and prescribed Senna as well as the Lactulose for her bowels.

After 7 days her lung function was down to 77%, her weight was 27.5 kgs, her bowel was still very full, and she was still getting a lot of chest pain and coughing up yellow gunk. By day 11, her weight had dropped again to 26.7 kgs, and she was feeling awful with tight, heavy lungs, chest pain and feeling generally unwell. So the local hospital started Seren on some IV antibiotics again, Meropenem and TOBI.

She is still on the IVs at the moment and although her chest pain is improving, her chest is a little crackly and the bottom of her right lung is very dull-sounding. Last week we got a call from the hospital to say that her gastrostomy operation has been moved forwards to 21st March, one week’s time, and we are very relieved. Her poor weight and appetite and nutrition is not only affecting her quality of life and causing her to feel so tired, it is directly affecting her lung health and her chest muscles and her ability to cough effectively.

Her weight is still sitting at 26.7 kgs at the moment and she’s having some trouble with her TOBI IVs, the levels of drug in her blood came back too high today, so they have to tweak her doses a little to avoid damaging her kidneys or her hearing. She is very much looking forward to having her operation and getting her gastrostomy fitted, getting stronger and feeling better and getting some quality of life back. The past few months have been so very tough for her, and for us, as her parents, to watch her become a shadow of her former self and to see her have to stop doing all the things she loved to do.

Once she has her operation and gets her overnight feeds up and running, she will be better hydrated, better nourished, have more energy, put weight on, be stronger, and be healthier. And we can’t wait.

However, the recovery from the operation will have a few hurdles. She will have stitches in for the first week and they will be stitched into her stomach muscles, so every time she moves they will pull, which will be very painful for her. She may also experience tube leaks where feed or stomach contents may leak onto her clothes/bedding, which would be distressing for her. She will also have a small wound in her belly button after the surgery, and they will be performing a bronchial lavage (filling each lung with saline, one at a time, and performing chest physiotherapy, then hoovering out all the gunk) during the anaesthetic, which should hopefully provide some bacterial answers, as she is awful at coughing effectively and so we have no idea what bugs may be lurking in the base of her right lung causing havoc.

Once she is out of hospital though, we have some fun times planned. Her Make A Wish trip is taking place from 31st March to 2nd April and then we are traveling to Wales to see my family at Easter, and then I have planned a very special trip for 10th to 12th April for just me and Seren, which will have a special surprise involved! So she needs to recover quickly and get strong to enjoy all the good times coming up.

Any prayers or good wishes for her current IV course, which will continue until after her surgery, or for her operation and recovery, are much appreciated. Hopefully her next update will be a much more positive one.

Thank you to all you lovely people who have sent Seren cards and postcards over the past few months. She has loved opening them. She had absolutely loads of Christmas cards, and our front room door was filled with them, back and front! Seren loves getting cards, particularly handmade ones or ones with pictures of cats/horses on them. Thank you very much to everyone who has sent Seren letters over the past few months. She loves getting letters and hearing about other people’s lives, and she likes when people have the same interests as her. She reads every letter, and I only have to help out when she can’t make out handwritten notes in ‘joined up’ writing! A big thank you to Dottie the Dalmatian, Seren loves all her paw print post! Thank you to everyone who has sent Seren gifts over the past few months, they have all been treasured and enjoyed. She received some lovely gifts at Christmas, and some lovely treats during early 2012, and they have gone some way to cheering her up through a difficult few months. A BIG thank you to you all for making my lovely girl feel special!

Update 5th December 2011

Seren has had an up and down few months since the summer. In September she had her annual review/MOT, and her routine chest x-ray showed up bronchial wall thickening and early bronchiectasis for the first time, which was an unpleasant surprise. It also showed up a large area of consolidation (big plug of mucus blocking an area of her lung) in her left lung, which we really needed to clear. To remedy this, she was started on daily hypertonic saline nebulisers, which soon had her coughing up lots and lots of horrible dark yellow gunk. They also found that she is seriously low on Vitamin K and so she started a vitamin K supplement. She was not happy about having extra medications to take each day!

We also had to request to take her back off her Pizotifen tablets, as we just couldn’t cope with her behaviour and mood swings while she was on it. It was agreed that she should come off the tablets and that if her migraines returned, she would have an alternative medication to treat it. For a while, she coped without any migraine prevention medication, but towards the end of October she had a nasty migraine which came on gradually over a few days and then got worse quickly. She was prescribed Imigran for this, a reliever rather than preventer medication, as the only other preventer medication constricts the airways, which is not good for someone with CF and asthma! The Imigran was very effective however, and within 24 hours she was feeling much better. So far, she has not had another migraine.

At the end of November, Seren accompanied her brother Dylan on a Make a Wish Foundation UK trip to Disneyland Paris and we all had an amazing time. She loved riding all the different rides and meeting all the characters, particularly Pluto, however, she came out in a heavy cold while on our trip, which compounded an already brewing chest infection we were up to then unaware of, and so by the time she got back home and got to CF Clinic on 2nd December, the bases of both of her lungs were sounding horrible, and so the CF Consultant put her on IV antibiotics the following day.

And wow, Seren has been SO brave for them so far!!! She is feeling pretty rotten and her cough is horrible, but she didn’t even flinch when they fitted her cannula on Saturday afternoon, and she coped amazingly well with her finger prick test (which was performed incorrectly twice and so she had to have three pierced fingers!), which was a huge improvement on her last IV course two years ago. Her cannula, which has been named Carrie, is starting to become painful on use but she is managing to keep going with it so far, and I have been able to do home IVs for the past 24 hours which has meant she has been able to come home from hospital. This means a lot with it being so close to Christmas. There is the possibility of her being readmitted if I can’t manage with both Seren and her brother Dylan being on home IVs at the moment (lots of juggling!) or if she can’t cope with the home IVs, or if she has a lot of problems with cannulas, but for the moment, she is home, and able to go into school for a few hours as well, so she’s fairly happy. Her IVs are due to finish on 17th December, as long as sufficient improvement has been made by then, and so hopefully by Christmas she will be feeling much better and her lungs will be in better shape!

Update 25th August 2011

Seren has had an up and down few months. She had a chest infection in June, which required antibiotics and extra nebulisers and physiotherapy to shift, but her chest is currently pretty good. She had a good report at CF Clinic, lung-wise, but she has been put back on her Pizotifen tablets, because she was continuing to feel nauseous and complaining of frequent headaches. She saw a specialist gastro-enterologist last month who diagnosed her with childhood migraines, which are now being pretty well controlled by the Pizotifen, although she still has the occasional headache.

The Pizotifen has had the happy side effect of increasing her weight to a lovely healthy weight, but it has had a much more negative effect on her behaviour and moods. There is little we can do about this, except work with her about it, and make sure she has regular access to the CF psychologist and the family support worker from the hospice.

She is also being tested for ADD, as we wonder whether this may explain her increasing behaviour and concentration problems which have been growing more and more noticeable over the past few years. The CF psychologist feels she may have short term memory issues and/or concentration issues, but this could also be caused by her finding it difficult to settle off to sleep.

She has recently discovered that she likes Coca Cola and Pepsi, and she sometimes drinks apple juice or blackcurrant squash again, as well as cups of tea, so her fluid intake has finally improved a little.

She has her annual review coming up on the 15th September, when we should know more about how her CF is currently affecting her. She is looking forward to celebrating Dylan’s birthday with him in just over a week and also to an upcoming hospice stay before going back to school. She’ll be going into Year 5 this year!

Thank you to Nicola Jane, Tracy (Bristol), Helen T, Karen (Sami), Kelsey, Claire, Glad, Emma, Libby, Nicole, H, Anne & Kaitlin G, Jocelyn, Karin, Shannon & Elsa, Liz, Louise Melissa & Sophie, Ruby, Samantha, Helen Brierley, Dottie, Denise, Adam & Hannah, Jenny, Melanie, Erica Durante, June, Jenny O, Kay, MJ, Lisa W, Susan, Kathryn, Claire C, Wendy, Claire, Jane and Tez for the fantastic cards! Thank you to Nicky, Despina, Mrs Hill, Libby, Dottie, Heli, Sarah G, Julia & Daisy and Tez for the lovely postcards! Thank you Maria S, Marie, Sofia, Wendy & Chester, Maria & Michael, Amani, Libby, Nicky, Julia Daisy & Daniel, Nicole, Anne & Kaitlin G, MJ, Sarah G, Lisa W, Shannon & Elsa, Georgia, Jordan, Becky, Dottie the Dalmatian, Kerry F, Amanda, Lisa, Vickie and Kelsey for the great letters and notes! Seren loves reading them! Thank you very much to Maria S for the stickers; to whoever sent the toy horse, notebook and ring; to Nicola Jane for the horse paper; to the lovely Libby for the many lovely parcels, including a ring, a necklace, make your own friendship beads, hairband and book! Thank you to Becky Butler for the Jinny book; to Julia, Daisy & Daniel for the horse sticker book; to Nicole for the puzzle book and pen; to Anne & Kaitlin G for the craft folder; to Lisa for the juggling balls; to Elizabeth B for the book on drawing horses; to Kelsey for the kitten stationery, the many lovely stickers and the bracelet; to Kate Dee & PP for the craft tub and horse book; to Jocelyn for the stickers; to Karin for the stickers and notelets; to Lisa W for the paint by numbers; to Shannon & Elsa for the bead kit, activity book, keyring, clay, magic slate and pencil; to Lisa W for the masks kit and sweets; to Anne for the book and CD; to Kay for the card kit; to MJ for the photos, sticky toy, sock purse, bath confetti, maltesers, magic worm and Saddle Club set; to Lisa W for the scrapbook and chocolate; to Jordan for the horse drawing; to Kim L for the cat jigsaw in a tin; to Kathryn for the face paints; to Claire C for the pencil case and stationery; to Amanda for the stickers; to whoever sent the necklace kit; to PP/Kim for the make your own fairy badge and art kit; to Tez for the dragon horns, horse notebook and pen, and horse sticker book; to Susan for the notelets in the tin, horse stationery kit, gel pens, pencil tin, pencils, notelets and envelopes; and thank you to Dottie for the party bag!

Update 30th April 2011

Seren has had an up and down few months. Her nausea gradually settled down through January and early February, and thanks to her new Pizotifen tablets, her appetite has increased even further, and fantastically, for the first time in years, she is actually gaining weight! What she’s eating is finally benefitting her! One of the side effects of the Pizotifen tablets is weight gain, and she is certainly getting that! Her weight has rocketed from a scary 23.9 kgs (11th centile for her BMI) in January, up to a fantastic 27.1 kgs (38th centile!!!) in March! And I think we’re going to have another pleasant weight-gain-related surprise at her upcoming clinic on 6th May too, as she’s looking a lovely healthy weight at the moment, thanks in part to her discovery of the deliciousness of doughnuts! She ate 10 doughnuts in about 4 days recently!

Seren had a nasty bout of tonsillitis with a horrible chest infection in early February and her chest was really noisy, with lots of thick gunk trying to choke her. We think the chest infection was viral, as an increase in her regular Augmentin tablets helped to sort it out, along with a FANTASTIC nebuliser medication – Nebusal! It’s 7% saline, aka hypertonic saline, and although Seren HATES having it, as it’s like inhaling sea water, horribly salty, it REALLY does the trick and shifts an absolute ton of yukky gunk. So Seren did have to have a few days off school thanks to the chest infection, but thankfully, the Nebusal speeded up her recovery and she was soon feeling much better without the need for IVs.

Since then, Seren has had a difficult few months with her emotions. In mid-February, she found out about the current CF average life expectancy of just 38 years and that upset her greatly. We talked about it to her as well as we could at the time, but it affected her sleeping, mood and behaviour over the next few weeks, and in March she burst into tears out of the blue and said that she couldn’t cope with the idea of her death hanging over her, it was all she could think about. She was also starting to refuse to take some of her medications.

So she had a talk with the CF Nurse, we began a ‘worry book’ for her to write her worries down and get them out of her head, and we bought her a ‘worry pup’ which lives under her pillow, who she can tell her worries to. She has also begun to receive counselling from the hospice where she receives her respite care, which we hope will also help. We are also trying to make her life as fun as possible, as she copes better when she has something in the not too distant future to look forward to, to keep herself positive; and she loves losing herself in a good book, her favourite authors are currently Jacqueline Wilson and Stacy Gregg. She doesn’t like to be alone with her thoughts for a second.

Here’s hoping for a great report from CF Clinic next week, and a happy, healthy summer.

Big thank you’s to December the Elf, Comet, Claire McCartney, Jodie, Ginny, Vickie, Claire, Becky Butler, Wendy, Lisa Sweeney, Quistis, Claire Connon, Libby, Susan Sweeney, Julia Daisy & Daniel, Jennifer Targhi, and Lynn for the beautiful cards! Thank you also to Claire, Liz, and Becky Butler for the lovely postcards! Thank you to Joko for the jigsaw letter! Thank you to Wendy, Mina, MJ, Maria & Michael for the lovely letters! Seren loves to read them! Thank you to Vickie for the bracelet kit; to Mina for the pictures and wordsearch; to Maria & Michael for the bracelet; to Lisa Sweeney for the sweet; to Post Pals for the talking hamster; to Susan Sweeney for the book and bookmark; to Julia, Daisy & Daniel for the photo and pencil case; to Sarah Devlin for the amazing Pony bookends!; to Jennifer Targhi for the beautiful Easter bag, stickers, egg stencil kit and mini eggs; to Lynn for the pony sticker book, DVD, Top Trumps and pumpkin seeds; to whoever sent the 2 iCarly dolls, Hannah Montana cushion, plasticine, Hello Kitty stickers and Hannah Montana game cards; to whoever sent the Hannah Montana sticker album; and to Becky Butler for the Saddle Club book!

Update 31st January 2011

Seren has had a good few months chest-wise, but she has been having a tough time since just before Christmas with a lot of nausea. In mid-December Seren got Norovirus, which didn’t hit her too hard at the time, but it seemed to flare her reflux symptoms up. So we brought the Domperidone and Gaviscon back and she started needing it more and more over Christmas, and by the time she got to CF Clinic at the beginning of January, her weight was down over a kilogram and the consultant couldn’t figure out why she was having such bad reflux symptoms despite being on a high dose of Omeprazole, along with regular doses of Domperidone and Gaviscon.

So the consultant started Seren on Pizotifen, an anti-migraine drug, to see if it helped to alleviate her symptoms, in case they were being caused by childhood migraines. He also ordered an abdominal ultrasound to check whether her liver is starting to have problems, or whether she has gall stones, as both these issues could cause nausea.

She’s had some issues with the new medication. It increases her appetite, which is fantastic, as she desperately needs to gain weight because the doctors are very concerned about her weight (or lack of it, rather). But it’s also made her very tired and she gets upset very easily. But of course, part of the getting upset easily is because she is trying to cope with her nausea symptoms and with all the rest of her CF stuff. But we’re doing our best to keep her going and calm her down and she still absolutely loves all her horse-riding stuff and is doing great in her swimming lessons and dance class too, so we’re trying to make her life as fun-filled as we can.

Her abdominal ultrasound is coming up on 10th February and we’re hoping that we’ll get some answers on some ways to help Seren and ease her reflux-style symptoms.

Thank you to the Prince Rupert School in Rinteln, Juno, Homberg family, Helen T, Kate Dee, Quistis, Claire, Charlee, Dana, Donder, Rudolph, Despina, Vixen, Deborah, Helen Brierley, Penny, Cupid, Tez, Dasher, and MJ for all the fantastic cards! Thank you to MJ, Prancer, Natsumi, Shion, and Blitzen for the pretty postcards! Thank you to Dottie the Dalmatian for all the amazing letters to us and Daisy Pipsqueak! And thank you to Sarah G, Dancer, Charlotte Pope, MJ, Vixen, Mandie, Lindsay, and Jenny for all the lovely letters and notes!

Thank you to Post Pals and Karen (Sami) for the Halloween goodie bags; to the Prince Rupert School in Rinteln for the stickers; to Anna for the picture; to Charlotte Pope for the horse, to Dana for the friendship bracelet; to Mandie for the iCarly book and the DVD; to Liz Ellis for the scraper art kit; to Lindsay for the jewel hairslide; to Helen Brierley for the Roald Dahl tape; to Jenny for the Hannah Montana pen and cuddly horse; to Tez for the dalmatian book and calendar; to our Elf for the Hello Kitty notepad, stationery, socks, stickers, flannel, cupcake, choc coins, nail kit, bangles, shower gel and face mask; to Sarah for the Heartland Horses book set; to Helen T for the jewellery set, the Claire’s Accessories gift card, choc coins, wooden horse kit, and High School Musical cards; to Quistis for the Animagic kitten; to Penny for the marshmallows and stickers; to Claire for the colouring sheets; to Mary O’Neill for the Hannah stocking; to Blitzen for the stickers; and to MJ for the Hello Kitty bracelet, Spongebob promise, stickers, Hello Kitty necklace, butterfly hairslide and mini show horse kit.

Update 28th October 2010

Seren has been pretty well over the last few months! She’s had the odd cold and did have a week in August where she had extremely high temperatures and totally lost her appetite (plus she’s had a few nasty chests), but they’ve cleared up relatively quickly with some extra Augmentin tablets and some saline nebulisers. She’s also had only minimal joint pain recently too, which is great.

She had her Annual Review in July, which was generally very positive. Her chest x-ray was really great! Her BMI was only on the 14th centile, and her lung function was only 89% and 91%, so not her best results, but she did have a wet cough for a few weeks around that time and had been coughing up yellow gunk. She also got put on long term Lactulose for persistent constipation, which has helped her a lot.

By her October CF Clinic appointment she had climbed up to the 26th centile for her BMI, which is fantastic, but her lung function was 93% and 80.8%, so even worse than last time. The doctors said that from the results, it looked as if she might be a little wheezy, so they said to try giving her some Ventolin, which didn’t help much, but she did develop a wet, chesty cough a few days later, which we shifted with some extra Augmentin tablets, extra saline nebulisers and plenty of physio, and her chest seems clear again now.

She just got her flu jab last Friday and at the moment doesn’t seem to have suffered any ill effects from it. She had her first proper eye test on Tuesday, after complaining of problems with her vision, and it was discovered that she is long sighted, so she has been prescribed some glasses to wear for close up work, which we will be picking up on Saturday. She’s really quite excited about getting them!
Here’s hoping for a healthy autumn and winter for her!

We have lots of thank you’s since our last update! Thank you to Elizabeth, Claire, Rosie, Mai, Elle M, Debbie & cats, Elle Lewis & George the cat, Quistis, Kim Lawrence, Vickie, Post Pals, Helen Brierley, Shahlaa, Julia & Roger, Mandie, Becky, Susanna, Maria S, Vicky S, Catherine and Kate Dee for the fantastic cards Seren has received lately! Thank you to Charlotte, Susan, Claire, Sarah G and MJ for the lovely postcards! Thank you to Jenny Orpwood, Claire, Kim Lee & Bridget, Postie Sarah, Maria & Michael, Kim & Kev, Samantha, Teresa, Tina, Tracy (Bristol), June Junko, Julie Emily & Daisy, Jenni, Jenny, Lynn S, Helen T, Jenny B and Beth for the beautiful birthday cards! Thank you to Vashti, Sophie & Emma, Naomi G, Amber, Aly Kehn, Rachel, Sarah, Claire, Karen Darren & Amelia, Claire McCartney, Lucy & Richard, Dottie the Dalmatian and MJ for the lovely letters, Seren loves to read them! Thank you to Sophie & Emma for the drawings; to Amber for the vouchers; to Rosie for the stickers; to Aly Kehn for the photo and stickers; to Postie Sarah for the Claire‚’s Accessories gift cards; to Teresa for the iron-on patches; to Mai for the notecards and envelopes; to Sheelagh Hawkins for the talking doorbell; to Elle M for the cat ring holder, ring, cat pencil topper and PDSA badge; to Claire for the Hannah Montana stamper customising set and keychain kit; to Debbie & cats for the cat postcards, and horse and cat stickers; to Elle, Lewis and George the cat for the cupcake candle and cat magnets; to Helen T for the Magic Ponies book, Pippa Funnell DS game and Net DS game; to Jenny B for the horse t-shirt; to Quistis for the cuddly cat; to Sarah for the photo; to whoever sent the notelets, postcards and paper; to Joanne for the cat drawing; to Maria & Michael for the Polly Pocket book; to Mandie Lowry for the Hello Kitty goodie bag, bubble gum, slides, stickers and iCarly keyring; to Karen, Darren & Amelia for the mini scraperfoil; to Helen T for the colouring book; to Penny Berrill for the Narnia Activity book; to Vickie for the cake pencil case and bracelets; to Claire McCartney for the High School Musical bookmark; to Lucy & Richard for the engraving art magnets and stickers; to Helen B for the High School Musical Top Trumps; to Shahlaa for the fairy stickers, hot chocolate sachet, Hello Kitty pencil case and lip gloss; to Dottie the Dalmatian for the lovely cuddly dog, which the children have named Daisy Pipsqueak; to Quistis for the cat charm and cat magnet; to Mandie for the butterfly clips, Pony in my Pocket and Narnia stickers; to Helen Brierley for the cat stickers; to Becky for the stickers, cat postcard and bunny; to Catherine for the sponge painters, foam stickers, craft pack, glitter and Holiday Things to Do book; to Margaret Howell for the cuddly doll; and to Vicky S for the fairy books and friendship bracelets.

Seren absolutely loves reading her own letters and cards, but sometimes can’t read small handwriting and decipher the letters. I read them out to her if this happens but she finds it more enjoyable to read herself. I hope that this may improve once she gets her first pair of glasses on Saturday but please could I ask if you write her a letter to write clearly for her. Thank you!

Update 22nd June 2010

Seren’s had a pretty rough couple of months really. She was pretty well until 24th April, when she started complaining of nausea. This continued into the next day, and the nausea was so strong that we had to leave Church, and Seren insisted that she wanted to go to the hospital to see if they could figure out what was making her feel sick. She was examined by a registrar on the ward, who said that it could be her gastro-oesophageal reflux flaring up, so he increased her Losec from 20mg per day to 30 mg per day, and he wanted Seren to submit a stool sample, to check whether her Creon dose needed increasing, as apparently too little Creon could cause fat to be left in her stomach undigested, which would inflame it and cause nausea.

Her symptoms didn’t improve over the next five days or so, and Seren had to sit out of class frequently during the day because of her nausea, and when the nausea hit, each time, she would need total silence to cope with it until it passed away again. She was also waking at night with nausea. It got to the stage where anything that went into her stomach, medications or food or drink, was making her feel incredibly sick, and it was REALLY making her miserable. She was also refusing to go to any of her after school clubs, or to Nanny and Grandad’s house, because she was always feeling sick.

At this point, her consultant prescribed her some Gaviscon to take regularly through the day every time she felt sick, but it didn’t help either. She barely ate anything all evening and had constant nausea and burning pain in her chest, and it took her until midnight to fall asleep, but then was awake again with nausea at 2am.

By the 30th April she was still refusing to eat or drink and I ended up having to take her to the hospital with dehydration. She was seen by her consultant, who examined her thoroughly and found that she’d lost 1.5 kgs in just five days, taking her BMI down to the 17th centile. He started her on oral rehydration, 5mls of Dioralyte every 5 minutes for an hour, which she managed to tolerate, and she had a cannula fitted and had blood taken to check her liver function, in case the nausea was caused by the start of CF-related liver disease.

The bloods came back okay and so the consultant said that the nausea and burning pain must be caused by her reflux, so he prescribed her a 3 day course of Ondansetron, a really strong anti-nausea drug. This worked within an hour and Seren was OVER THE MOON! For the three days she was on it, her nausea completely disappeared and she was eating and drinking normally and enjoying life.

However, because it’s such a strong drug, she was only allowed to take it for 3 days, and when the last dose wore off, her nausea and burning pain came straight back. She was so disappointed and the nausea was having a big effect on her life. She started refusing to sleep in her bed, or anywhere in the house, wouldn’t sleep with bedding on or pyjamas, panicked if she was ever on her own in a room, and was too scared of feeling sick to go to any of her after school clubs.

She was seen at CF Clinic on 7th May and although she’d started putting back on some of the weight she’d lost, her lung function had dropped to 80-odd%, and her consultant found that her bowel was badly blocked. We felt that this was caused by the Ondansetron, because prior to her having it, her bowel hadn’t been blocked, but the consultant felt that this had been missed and was the actual cause of the nausea. But either way, the blockage had to be cleared before Seren could start any new treatments for the nausea, so she started taking 10 mls Lactulose twice a day.

This cleared the blockage within a week, but Seren’s nausea and burning pains were just as bad as ever, so the consultant finally started Seren on Domperidone on 14th May, to empty her stomach more quickly, three times a day. This worked a treat, and completely changed her life. She was able to take the tablet 20 minutes before a meal, eat as much as she liked, and not feel sick afterwards! Snacks in between meals were still making her sick, so she had Gaviscon after her snacks, and that solved that last of the issue.

More recently, the increased dose of Losec seems to have taken effect, and her stomach seems to have healed and become less sensitive, and so at the moment, she’s not needing very many doses of Gaviscon or Domperidone, but we know what to do each time she does get symptoms – we bring out the Domperidone and the Gaviscon, and we sort it.

Seren also had a bit of a chest infection at the end of May and beginning of June, a viral one which started out as a cold and went onto her chest and had her coughing up thick chunks of yellow gunk. We increased her Augmentin tablets for a while as a precaution, and had her on lots of saline nebulisers and extra physio sessions, but she coped REALLY well with the infection and worked hard at clearing her lungs all the time.

She’s just about back to normal now after a rough couple of months, and fingers crossed she’ll have a good few months now. She has her Annual Review (MOT) coming up next month, and so she’s got to go have blood tests and a chest x-ray done tomorrow, in preparation for the MOT.

She’s also got her FIRST EVER hospice stay coming up next week, and lots of fun things planned at school, like Nature Club and Sports Day. And of course, in just 19 days, it’ll be Seren’s EIGHTH birthday!!! She’s incredibly excited!

Thank you to Fiona, Kate Dee, Quistis, Postie Sarah, Helen Brierley, Kim, Martin Jackie & Jamie, Libby, Post Pals, Maria & Michael, Jon Paul O, Max, Liz in Manchester, Charlie & Lianne, Lucy, Liz, Lily at St Pauls Rainbows, Elizabeth Eckhardt, Claire, Sarah and Jenny for the beautiful cards! Thank you to Margret, Despina, and Claudia Meyer for the lovely post cards! Thank you to Caroline, Charlotte Poulter, Darren Shannon Daniel Owen Leah Matty & Missy, Karen Drew, CeeCee, Julie Deaves, Maria & Michael, Lydia, Stephanie Dominic Karen & family, Lindsay F, and Helen Brierley for the fantastic letters! Thank you to Fiona & Peter for the cuddly Little Miss Sunshine; to Helen Brierley for the seeds, the rabbit photos, the cat stamp and the letter and numbers stamps; to Post Pals for the organiser; to Maria & Michael for the make your own animal specs; to Jon Paul O for the knitted duck; to Caroline & Max for the chocolate chicks and bunnies; to Darren Shannon Daniel Owen Leah Matty & Missy for the skipping rope; to Karen Drew for the iCarly necklace and puppets; to whoever sent the fairies sticker and Polar book; to Kate Dee for the craft kit; to whoever sent the Hannah Montana purse; to Helen T for the grow your own fairy garden kit and fairy poster art kit; to Sheila for the hair dressing doll, Disney Princess card game, and design your own pencil case kit; to Postie Sarah for the Sylvanian Family village sweet shop and koala family, the Pony In My Pockets; to Joanna for the notepad and gel pens; to Lydia for the craft supplies; to Claudia Meyer for the Melinda book and bracelet; to Stephanie Dominic Karen & family for the knitted teddy, Bratz book, pencil and rubber and create your own diamante notebook; to Claire for the lucky dip gift; to Sarah for the mini monster; to whoever sent the dolls bedding; to Paul Stef & Keera for the cuddly dog; to Jenny for the booklet and make your own handbags kit; to Lindsay F for the knitted lion; to Post Pals for the bracelet, purse, make your own handbags, turtles and my sewing kit.

Update 27th March 2010

Seren had an incredibly difficult end to 2009. She became ill on 3rd December, and that was the last full day she spent at school that year. She had CF Clinic on 4th December, and her lung function was down to 80%, and she had a temperature and was tired and had a low appetite. By the following Wednesday, her lung function had declined even further (the CF Nurse wouldn’t even tell me the results, so it must have been bad!) and she was struggling with a horribly thick chesty cough. She had a chest x-ray and was started on Ciprofloxacin oral antibiotics.

By the 12th December, she was incredibly lethargic, refusing to eat or drink, coughing constantly and barely able to breathe on times, and so we took her back into hospital. She had lost over a kilogram and was started straight on IV antibiotics via a short long line in her arm. The line failed the following morning and so she had another cannula fitted, which quickly became incredibly painful to use. So another cannula was fitted, this time a baby cannula, the smallest available, and incredibly, it lasted the whole of the rest of the 14 day course!

The IVs slowly worked their magic on the infection, but Seren was very poorly, requiring 6 nights overnight stay at the hospital, numerous saline nebulisers, inhalers and tons of extra physio sessions because her cough was the worst I’ve ever heard it, and she found it so distressing. There were many times when mucus completely blocked her airways and she was unable to breathe while she struggled with her coughing fits and her chest was recessing the worst I’ve ever seen it.

Christmas was a very weird time with the twice-daily trips to the hospital for her IV doses and all her treatments, but she still managed to enjoy her day, and by the time the IVs finished on the 26th December, she had regained most of the weight she’d lost and her cough was much improved. But it still took her another few weeks to recover completely, to get her energy back and to stop coughing altogether. She was just about better in time to go back to school in early January.

Since then, she has been very well, with just the occasional cold, and she did have a day off school after the second half of her Swine Flu jab, as she had a high temperature, lethargy and loss of appetite.
She had an appointment with a CF Specialist earlier this month, and we were amazed when her lung function had gone up to an AMAZING 125%!!! The highest it’s ever EVER been! The specialist was really pleased and said that although late 2008 and all of 2009 were rough for Seren, she seems to have recovered really well and although her weight still needs a lot of work, she is generally doing well at the moment.

We know that she’ll get hit again by another nasty chest at some point in the future, and she does have a slight cough on times at the moment, but the specialist has given us some new weapons to use on the gunk when that does happen (such as steroids, different inhalers and hypertonic saline), and so for now, we’re enjoying this period of good health, as is Seren, although the fear of getting ill again is always there, in the back of her mind.

We are very much looking forward to the Easter holidays, as we are going to visit my family in South Wales for Easter, and then Seren has a 3 night Brownie sleepover when we get back and she can’t wait!
Fingers crossed for a healthy, happy Easter!

Thank you to whoever sent the reindeer cards and reindeer get well card! Thank you to Kathryn, Carole Sinclair, Gracie, Debbie & cats, Post Pals, Matilda Loughtman, Despina, Ruby & Mr & Mrs Nissen, Lucy, Daniel, Lynzie, Helen T & Adrian B, Catherine, Jane, Jennifer Jain & family, Karen (Sami), Tez, William S, Katie, Kim Ginger, Laura H, Rockferry High School, Brabourne & Smeeth Brownies, Sarah, Selina, Lynzie Elf, the Homberg Family, Helen Brierley, Prancer, Lucy Ashworth, Zoe, Lindsay, Becky Paulinyi, Beth Wendy & Doris, Emma Gray, Martin Jackie & Jamie, Estelle (Taunton), Sarah Kidd, Sarah G, Kate Dee, Natsuki, Estelle Graham Kate & Lauren, Daniel & Joseph, Lucie Shaun Daisy & Molly Willby, Emma & Jayden Barclay, and Postie Sarah for all the cards received in December 2009 – they were invaluable at keeping Seren occupied and upbeat during her hospital stay and long period of illness!

Thank you to Elizabeth Eckhardt, Kate Dee, Kim Ginger, Alexia, Postie Sarah, K, Jannah, Kate Dee, Lily, Sarah G and Alison for the fabulous cards Seren has received so far in 2010, and thank you to whoever sent the anonymous Valentines card. Thank you to Kim Ginger, Nina, and a ‘friend’ for the postcards! Also, thank you to Beth Wendy & Doris, Becky Paulinyi, and Lily for the cards for Adrian and me. Thank you to Mrs Claus, Al the elf, Snowberry, Beddy Bear and Maria & Michael for the lovely letters! And thank you to Sarah G for the notes!

Thank you to Debbie & the cats for the paper chains and sand art; thank you to Jaxsons Blankets for the blankie; thank you to Al the Elf for the fairy dust and elf hat; thank you to Post Pals for the Rock On necklace, selection box and snowball bath fizzers; thank you for the Littlest Pet Shop Pencil case; thank you to Jennifer Jain & family for the cat book; thank you to Kathryn for the sweets and stickers; thank you to Vickie for the lolly; thank you to Sarah for the make your own Christmas decorations; thank you to Beth & Wendy for the Shining Stars cat, Hannah Montana mug, cookie mix, hair accessories, scrapbook kit and Buttons; thank you to Doris for the Lady & The Tramp book and Bratz activity annual; thank you to Jess in Taunton for the Narnia colouring book; thank you to Natsuki for the origami; thank you to Daniel & Joseph for the cuddly Santa; thank you to Lucie Shaun Daisy & Molly Willby for the Bratz Pampered Petz; thank you to Jessica Bryce for the biscuits; thank you to Becky for the mini scrapbook; thank you to Jenny Bridger for the personalised jar of sweets and cat diary; thank you to Tez for the cat and dog bag; thank you to Helen T for the smiley faces, the solar butterfly, the Naughtiest Girl in the School books, the Buttons, the Bad Girls book, the DS bag and GAME gift card, the Illustrated Mum book and the High School Musical stamper customising set; thank you to Postie Sarah for the Sylvanian Family rabbit and chipmunks and star fairy pyjamas; thank you to Al the Elf for the knitted dog in a bag; thank you to R Gallimore for the marshmallows, Hello Kitty cafe and mosaics by numbers; thank you to Grace Caterham-Ashford for the nail varnishes, Sylvanian Family gift shop, Hannah Montana activity pad and pen, the Russian doll bobbles and clips and Sylvanian Family cat; thank you to Becky P for the bracelet, bobbles and dragonfly necklace; thank you to Kim Ginger for the cheerleader pom poms. All the presents made a difficult December almost bearable!

Thank you so much! And thank you to the lovely person who sent me the Boots fruit cocktail toiletries; to Helen T for the russian doll; to Jenny B for the bottlecap keyring; to Helen T for the GAME gift card for Adrian; and to Jenny B for the bottlecap keyring for Adrian!

Also thank you to Sarah Kidd for requesting an Angel for Hope; thank you to Alison for the Camp Rock book and cat bookmark, thank you to Elizabeth Eckhardt for the stickers; thank you to Lily from 2 Stray Cats for the very beautiful Purddy Cat; thank you to Nina Saustrup for the handmade cat; thank you to Rhiannon for the doorhanger kit; thank you to Post Pals for the duck to swan kit; thank to you Debbie & the cats for the audio book.

And thank you for the gorgeous box of treats I was sent for Mothers Day! I got a card, a ‘Favourite Prayers’ book, ‘God’s Little Book of Comfort’, a LUSH bath bomb, heart notecards and pen, a magnetic notebook and two more notebooks! :o)

Update 26th November 2009

Seren has had a pretty good couple of months, with a rough chest infection in the middle.

On 16th September, Seren started swimming lessons and is so far doing really well!

On 27th September Seren came out in a heavy cold and by the following day it had gone onto her chest and was quickly making her poorly, but she insisted on going back to school on the 29th. The following day, I discovered that she’d been trying to hide her chesty cough from me, so that she wouldn’t have to miss school, cheerleading or swimming, but although I let her do those things, she was exhausted and breathless by the end of the day. By the end of the following day, her cough was really nasty again.

On 2nd October, Seren had CF Clinic and they found that although her weight has gone up to 22.7 kgs and she’s now 124.5 cms tall, it puts her on the 27th centile for her BMI so she’s still got a long way to go to get to the 50th centile and her ideal CF-healthy weight for her height. Her SATS were okay, but the physio was concerned when she heard her nasty cough and wanted us to increase her physiotherapy to three times a day until her cough improved. And when she did her lung function, her FEV 1 was down to 80.3%, a drop of over 20% since July. Her consultant listened to her chest and there were a lot of crackles in her right lung as well, so he increased her antibiotics and said to make sure to increase her physio as well.

By Sunday, Seren’s chest had got much worse. She was too tired to go to Sunday School and she was so tired that she barely moved off the settee all day and her cough was absolutely disgusting. The gunk in her chest was so thick that she was choking frequently. It got so bad that she was refusing to cough or have her physio, and so we started up a physio reward chart, so that she could earn a Miley Cyrus doll by working hard with her physio, and that really helped to motivate her.

Seren insisted on going to school on Monday, so I spoke to the CF Nurse about having a saline nebuliser to help her to break down the mucus more easily. She agreed and so we picked it up at the end of the day and she tried it for the first time that night. It definitely made a difference, and although her cough was still very rattly, she was able to cough some bits up.

She insisted on going to school on the Tuesday as well, but because of all the mucus she was coughing up and swallowing after her morning dose of nebuliser, she vomited three times at school that morning and had to be sent home. When I got to school to pick her up, her face was greenish-grey and her chest was incredibly rattly. She sounded absolutely terrible, so I took her home and rang her CF Nurse and arranged for her to see Seren at the hospital.

When she was examined, her SATS were lower than usual, and although her FVC was in the 90s, her FEV 1 was down to only 36%. Part of that was a reluctance to blow hard enough, because she didn’t want to trigger coughing, but obviously, even allowing for that, her lung function was LOW. Her chest still sounded crackly and harsh, but as her swab results were clear, the consultant thought that it was probably some sort of viral infection. So he prescribed LOTS of physio, LOTS of saline nebulisers, LOTS of rest, increased her preventer and reliever inhalers, and wanted her to drink plenty of fluids to help thin the mucus.

So she was on a very intensive treatment regime, but it really helped in the end. She worked very hard with all her physio sessions and although she was choking on her mucus many times, she kept coughing until she’d cleared her chest for a while. She ended up having Wednesday, Thursday and Friday off school, and by the following Monday, she had recovered enough to go back to school.

On 24th October, Adrian (Seren’s Daddy) came out in suspected Swine Flu, and was put on Tamiflu. Because of Seren’s CF, she was given a 5 day course of Tamiflu as well, and despite all the horror stories about side effects from the Tamiflu, apart from complaining of mild nausea twice, she didn’t have any side effects at all! And thankfully, neither did she come out in Swine Flu!

On 5th November, Seren had her flu jab and she was very brave!

Since then Seren has stayed very well, without a hint of a cough or cold. Fingers crossed for a healthy December and a fun Christmas! Seren has her Swine Flu jab coming up on Friday and CF Clinic on the Friday after, 4th December. She’s already very much looking forward to Christmas, to putting up our tree, and to taking part in her school Christmas Play – she’s going to be The Narrator!

Thank you to Maria & Michael, Sarah, Tracy (Bristol), June Junko, Becky Paulinyi, Viks, Zoe Preston, Kate Dee, Kim Ginger, Sarah Gilligan, Jane, and Sarah for the lovely cards! Thank you to Sarah Gilligan, Lorna, and Tam from Japan for the postcards! Thank you to Claire McCartney, June Junko, Debbie Gray and Beddy Bear (aka S Gilligan) for all the letters and postcards! Thank you to Post Pals for the LEGO plane. Thank you to Maria & Michael for the skeleton straw. Thank you to Sarah for the Animal Hospital koala playset; and for the fish kit, caterpillar kit, popping candy, 2 bracelet kits, butterfly kit, 2 lollies, Princess Smartypants book, cat mask, needlepoint kit, dog mask, make your own jigsaw kit, cress kit, Rainbow Magic book, and Eco-Wolf book; and for the paper rabbit. Thank you to Post Pals for the flying lantern. Thank you to Viks for the chocolate bar. Thank you to Kim Ginger for the fairy activity book; and for the rub on stickers. Thank you to Jenny B for the Bratz runway game. Thank you to Debbie Gray for the cat game. Thank you to Post Pals for the Jonas Brothers book and the Wish Box. Thank you to Jane for the craft supplies. Thank you to Sarah for the ‘Puffa Pouch’!

Update 13th September 2009

Seren has had a great summer and taking her Calogen up to 30 mls per day has made a big difference to her appearance! She is starting to fill out and looks much healthier!

She has really enjoyed her summer, having her friend round to play at the house, going to the bowling alley, going to Pleasurewood Hills, going to the cinema, going to a play farm, going on holiday to West Wales, staying overnight with my parents, going to the park, going to Africa Alive, playing in the fountains, and helping Dylan to celebrate his 5th birthday, including bowling free hand for the whole hour!

On 25th August Seren’s physiotherapist came round and taught her how to use the PEP machine to do her morning physio. It is MUCH quicker than percussion physio, and involves blowing down a mouthpiece which has a resistor fitted to it, and each puff has to move the attached pressure gauge up by 10-20 bars. She has to do this ten times and then repeat it. She got the hang of it really quickly and it is a total life-saver in the busy mornings! In the evenings she still has her percussion physiotherapy on the physio bed.

On 26th August Seren had a GP appointment to see about her warts on her fingers and her frequent mouth ulcers. The GP put her name on a list to have her warts frozen off and gave her a prescription for a new paste to put on any future ulcers, apparently they are caused by her body being ‘run down’ by having CF. We walked back from the GPs and Seren’s joints were causing her a lot of pain, so she ended up having to go in the pushchair for half of the way home.

On 3rd September Seren started Year 3 at school and was VERY nervous about how she’d cope with the harder work, but has settled in beautifully now! On 7th September, Seren went to her first session of Brownies! She looked so beautiful in her new uniform and she really enjoyed herself there.

On 9th September Seren woke up with very sore hips, after a) her first PE session of the term the day before, and b) forgetting to put her insoles back in her shoes after PE for the rest of the day, and so she needed a dose of Ibuprofen, but it gradually improved and she was okay the next day.

Fingers crossed for a healthy autumn and winter!

Thank you to Brittanie Lark, Tina, Amy Singleton, Viks, Helen T, Liz, Kim Ginger, Hanna and Jenny B for the lovely cards! Thank you to Estelle, Kate & Lauren, Sarah Gilligan, and the Schauer family for the postcards. Thank you to Brittany Henderson, Alexis Schoonover, Kameesha for the notecards (and the wordsearches!). Thank you to whoever sent Seren the cat newsletter, she loved it! Thank you to Lydia for the party bag full of goodies! Thank you to Jenny B for the gorgeous Hannah Montana bag, bobbles and hairband! Thank you to Debbie & cats for the beaded frame kit. Thank you to Helen T for the Hannah Montana stickers. Thank you to Kim Ginger for the lovely books! Thank you for the flannel lollipop. Thank you to Post Pals for the lovely pillow, the cuddly poodle and the pirate chocs. Thank you to the Schauer family for the Turtle magazine and Barbie stickers.

Update 18th July 2009

Seren has had a tough few months. On 27th April she was complaining of hip pain, so she had to skip PE at school, and when I spoke to the physio on 30th April, she told me that because it was causing her so much pain, Seren would have to completely avoid trampolines and only have two minutes at a time on a bouncy castle. She said the best exercise for her would be walking, swimming or cycling. Seren was NOT happy!

On 11th May, Seren was saying that she hates having Hypermobility more than she hates having CF, and it was really starting to impact negatively on her life as she was getting pain most days and was struggling to cope with the limits it was putting on her lifestyle. I decided that we needed some more input from her physio about her hypermobility. On 13th May she was complaining of even more pain, and then on 17th May, Seren had a bit of a meltdown and was incredibly upset, saying that she hated CF, hated hypermobility, and just wanted to be normal and to have a normal brother.

On 19th May she had more hip pain and so I ended up giving her ibuprofen for it, which helped. On 20th May she finally saw the physio, who answered Seren’s questions about her hypermobility and re-assessed her joints (she scored 6 out of 9 on the Beighton Score, and her elbows, fingers, knees and ankles are her bendiest joints). The physio also picked up that Seren’s ankles bend in and aren’t supporting her legs properly, which is causing her knees and hips to twist, so when she’s walking it’s causing her lots of pain. To help with this, Seren needed to get some more supportive shoes, be fitted for insoles to re-train her ankles, and to start doing ankle exercises every day to strengthen her ankle muscles. She also said that Seren can try doing 5 minutes at a time on a bouncy castle and see how she copes. If she copes well, then she can increase it. As for other activities, such as a gymnastics class, she can try it and then see how much pain it causes and whether it’s within tolerable levels. We said that we’d noticed that just before Seren gets a bad episode with joint pain, she gets REALLY tired and grizzly, and apparently that can be common with hypermobility syndrome.

When I picked her up from school that afternoon, her teacher said that he wanted to refer her to the Parent Support Adviser, who could get her into some after school activities to improve her quality of life and to act as a kind of respite from coping with Dylan and his challenges, to have some time for herself.

On 24th May Seren started with a dry cough and wheezing and seemed tired with very little appetite. The next day her temperature shot up to 40 C, her cough got worse, and she still wasn’t eating. I took her to the hospital the next day when her cough was 40.4 C in the early hours of that morning and 39 C later in the morning. At the hospital, she was 22.1 kg and her sats were 97%, but while we were there her temperature shot back up to 40.1 C and she was very out of it, just zonked out on the hospital bed, and her face was a horrible red/grey colour. Her ears and throat were slightly red and one area of her lung wasn’t getting any air entry (like in March), and if it hadn’t been for the x-ray showing no serious infection and clear blood tests, they would have kept her in hospital and started her on IVs. As it was, they sent her home on oral Ciprofloxacin for a week, saying that it was probably some sort of viral infection.

When she got home that night her temperature was still high, but it broke overnight and stayed down after that. However, she was still incredibly pale and wasn’t eating or drinking much at all. By the 29th, Seren was still very tired, snuffly and coughing, but she did eat a bit. The next day she slept late and was still very tired and grumpy, and that didn’t improve over the next few days.

School started back after half term on 1st June, but Seren was still absolutely exhausted with no appetite. I did think her cough was starting to clear up, but that night she suddenly started with AWFUL coughing fits and a really nasty, thick, chesty cough. I tried doing a really intensive physio session that night but it didn’t really help, as Seren could feel how thick the cough was and didn’t want to cough!
She wanted to try going back to school the next day and so I dropped her off in the morning, but she was sent back home at 10.30 am because she was so exhausted, refusing to eat and coughing so much, and she was complaining of nausea. I rang the CF Nurse and she said that if Seren got worse before Friday’s CF Clinic, then we should take her to the hospital, but if possible, it would be best to wait until Friday. She had a really bad day and that evening was so so poorly, she couldn’t stop coughing, could barely breathe, her chest was recessing badly and physio just wasn’t shifting it.

She was just as bad the following morning, so I took her to the ward and she had dropped over a kilogram in a week, taking her down to only the 10th centile for BMI, and when the registrar listened, the same patch of her lung still wasn’t getting any air entry. She didn’t want to put her on Ivs though until she’d had her lung function done, so we had to wait until Friday and she prescribed Seren some Augmentin tablets to get her through til then.

Seren had awful coughing fits again for the rest of the day and for most of the next day, but around tea time, Seren FINALLY found some energy and found a bit of an appetite and said that her chest felt a little better!

The 5th June was CF Clinic and although her cough was still really nasty, she ate and drank better, and when she was weighed, she’d put on 1/2 a kg to take her back up to 21.5 kgs, which was 13th centile for BMI. The real bit that scared us was her lung function, which had dropped to 81%, and I dread to think what it had been a couple of days before that. However, she HAD managed to clear the dull patch in her lung! Her consultant diagnosed her as having the flu which had given her a secondary chest infection, but that because she had started to show some improvement, he wanted to hold off on the IVs and continue on the Augmentin. If her lung function hadn’t gone back up by her Annual Review in July though, she would have IVs. Due to her incredibly poor weight, her dietitian gave her Calogen supplements to try, 5 mls twice a day.

From 6-9th June, she had a slow and steady improvement and she was slowly regaining her appetite and energy, but her cough was still very wet and she was still sleeping an awful lot. On 10th June, she had her Annual Review bloods done and she was INCREDIBLY brave! When we saw her teacher that afternoon, he said that she definitely didn’t look well enough to go back to school.

She finally went back to school on 15th June, and on 17th June, I saw the Parent Support Adviser about extra-curricular activities, and she got her into a dance class on a Thursday night! She also said that when Dylan turns 5 in September, she can get him into extra-curricular stuff too! Woo hoo! Seren went to her first dance class on 25th June and she loved it and didn’t have any pain afterwards!

On 26th, Seren had her orthotics appointment to fit her for her insoles and she was very upset when the phsyio told her exactly what sort of shoes she’d have to wear once she got the insoles. They would have to be very sturdy t-bar shoes that she’d have to wear all day and she’d have to wear trainers instead of plimsolls for PE. She‚Äôd also have to get special trainers just for wearing indoors so that she could keep them on right up until she went to bed. She was NOT happy!

On 2nd July, Seren was complaining of lots of ankle pain because of all the practise they were doing at school for sports day and so she took her trainers into school to wear for PE to give her more support, which did help.

On 10th July, I did Seren’s annual review nose throat and cough swabs, and she had her birthday party, and a VERY good school report! She got all Level 2 and 2b’s, and in Reading and Science, she got Level 3! What a total star! Her teachers were SO pleased with her!

The 11th July was Seren’s 7th birthday and she opened her presents first thing, then we all went on the train to Norwich and had lunch at Frankie & Benny’s before Adrian took her to see High School Musical live show at the Theatre Royal.

The 13th July was Seren’s sports day and she tried her best. Then on 14th July, she met her new teacher and gave her a little book I’d written called ‘All About Me’, which was written from Seren’s perspective explaining about her CF, her astma and her hypermobility, and explaining about the problems she’s faced over the past year, which should help her new teacher to understand her and help her.
On 16th she had her Annual Review, and her weight had gone up by only 200g to 21.7 kgs, which only took her up to the 16th centile for her BMI. However, her bloods and swabs were clear, which was great. Her Vitamin E dose needed reducing from 1 ml to 0.5 ml per day because her vitamin E levels were too high, but all her other medications stayed the same. The consultant acknowledged that this has been by far her worst year health-wise and knows that it is directly related to her poor weight gain, so wanted the dietitian to get involved. He wants us to increase her calorie intake, push the Maxijul powder as much as we can, and to bump up her Calogen dose from 5 ml twice day to an initial 5 mls three times a day before building up to 10 mls three times a day eventually. He also said that if her weight centiles haven’t improved by this time next year, then we’ll need to start seriously thinking about a gastrostomy, which neither Seren nor we want, if we can avoid it. She was also seen by the physio, who fitted her new insoles and said that she’ll be teaching her a new form of physio over the summer, using the PEP machine, which Seren will be able to do by herself. This will be great!

The following day was her last day in Year 2 at school and her last day of Key Stage 1! Dylan was at the childrens hospice, so we went to the shoe shop and got Seren some Doodles and two pairs of trainers, one pair for indoors and one pair for outdoors, so she’s sorted now until school starts back.

Fingers crossed for a happy, healthy summer holidays!

Thank you this month to Martin, Jackie & Jamie, Catherine, Tracy (Bristol), Sarah, Michelle Kendel, Becky Butler, Kim Ginger, Kate Dee, Claire McCartney, Estelle & children, Helen T, Helen Brierley, Maria & Michael, Julie (Daisy’s Grandma), Debbie & cats, Charlee, Jack & Harry, Jenny Orpwood, and Linby for the lovely cards! Thank you to Maria & Michael and Despina for the postcards. Thank you to Nicky Walker, Helen T, Hayley, and Anne Gairn for the letters. Thank you to Margret Nagy for the note. Thank you to Helen T for the tray bake cake. Thank you to Tracy (Bristol) for the Clementine book. Thank you to Claire McCartney for the get well balloon, and the hair clips. Thank you to Kim Ginger for the paper butterflies and the inflatable guitar. Thank you to Estelle & children for the ‘Wheelie Girl’ book. Thank you to Anne Gairn for the make your own Address Book kit and Ella Courtney doll. Thank you to Anna for the Me To You Bear photo clip, bobbles and cuddly duck. Thank you Debbie Gray & cats for the furry cat. Thank you to Helen T for the Hannah Montana stickers, sticker book and 3D drawing pad. Thank you to Helen Brierley for the dressing up fairies book. Thank you to Charlee, Jack & Harry for the stickers.

Update 26th April 2009

Seren has had an up and down couple of months. On 16th February, Seren still had a wet cough, but she had a swab done on the 17th and it came back clear.

On 22nd February, Seren went to soft play and really wore herself out doing handstands and forward rolls and started complaining of joint pain. The next day, she was very very tired and didn’t want to go to Rainbows after school because she was so tired. On 24th, she started swimming lessons at school again, and afterwards, she was still complaining of joint pain, and was still exhausted. I put it down to all the exercise at first, thinking that it was her muscles which were painful, but on the 25th, she was STILL complaining of pain, and it was in her elbows and knees, not her muscles, and it moved to her hips and knees. Seren still had the joint pain in on the 27th March, but she managed to go to Rainbows that week. People had been suggesting that her joint pain could be caused by her hypermobility and so I rang her physiotherapist to ask her advice. She said that yes, it was her hypermobility and that she needed a week of total rest, no walking to school, no playing outside at play time, no swimming, and no PE. So she had a week of total rest, which she found VERY frustrating, but it did completely get rid of the pain.

A week later, when I picked Seren up from school, I noticed that she was developing a chesty cough, so over the weekend we gave her extra physio and inhalers and kept a close eye on her. The cough wasn’t any better by the Monday, so I took her into school and she had a lot of coughing fits on the way, so I asked her teacher whether he thought she was well enough to stay. We decided to let her try staying and she coped okay. Over the next few days, her cough kept getting worse, so she had a swab done again and we kept up the extra physio. The swab came back clear on the 29th March, but her cough was getting worse and she was starting to complain of stomach pains, and she had a restless night.

On 30th March, her temperature went up to 38.8 C, and she was still coughing and still had stomach pains. The CF Nurse came out to see her and said her chest sounded okay, but that if she was still unwell the next day, to get the GP to see her. Seren didn’t eat much all day and her cough just kept getting worse. By the end of the afternoon she was having really bad coughing fits and could hardly breathe and extra physio wasn’t helping.

We ended up taking her to hospital that night and when the doctors listened to her chest, there was a section of her lung which wasn’t getting any air entry and so they were concerned that she might have pneumonia, so they sent her for an x-ray. Her lungs looked okay on the x-ray, so the doctors thought it could either be an infection or a plug of mucus, so they said to keep up the extra physio, took another cough swab, and started her on some Augmentin antibiotic tablets.

The next day wasn’t much better, she still had no energy and was hardly eating, and her cough was really disgusting. She was still struggling on 1st April, so I rang her physio who came out and had Seren blowing bubbles and did her a physio session with huffing and vibrations, which shifted some gunk, and afterwards her chest sounded clearer. I tried her on walking to school to drop Dylan off and pick him up again and it tired her out and gave her coughing fits, but she managed it okay. The following day, there was a definite improvement, so we let her go back to school and she started coughing up chunks of thick, dark yellow gunk, proof that there was actually an infection in her lungs, but that because her symptoms were improving, the Augmentin seemed to be working.

On 3rd April she had CF Clinic and she’d put on a little weight and grown slightly, although her BMI centiles didn’t improve. The consultant was happy for her to continue the two week course of Augmentin without resorting to IV antibiotics. Phew!

On 24th, after a hula hooping PE session the day before, Seren was complaining of joint pain again and is still sore today, so I think this is going to become a problem for her now, as she’s so active and is getting more adventurous with what she’s doing and is triggering joint pain. She doesn’t like to have to tone down what she wants to do though, so it’s going to be tough finding the right balance of activity without causing pain.

Thank you to Michelle Kendel, Jill, S, Rachel Wheeler, Nicky W, Lisa, Julie Barrett, Kim Ginger, Post Pals, Helen Brierley for the cards. Thank you to Julie for the postcard.  Thank you to Debbie Gray for the card you sent for all of us. Thank you to Helen T for the letter and thank you to Tor for the note. Thank you to SOLAK for the beautiful cushion. Thank you to Michelle Kendel for the paper doll set. Thank you to Sarah for the Narnia postcards. Thank you to Helen T for the ‘Things to Make and Do’ tin! Thank you to Post Pals for the cuddly teddy. Thank you to Post Pals for the balloon modelling kit! Thank you to Kim Ginger for the finger puppet and High School Musical wall planner. Thank you to Helen Brierley for the Disney books and rabbit mask kit. Thank you to Julie B for the decorating eggs kit. Thank you to Post Pals for the puppet kit. Thank you to Tor for the fuse bead kit! Thank you to Post Pals for the Beatrix Potter notecards and envelopes. Thank you to Debbie Gray for our DVDs and Seren’s make your own hairband kit. Thank you to Post Pals for the growing eggs.

Update 15th February 2009

Seren’s had a reasonably good time of things lately with her health, except for the past couple of weeks. On 26th January Seren up came down with a cold that hit her full force and she was very grizzly, so she ended up having the next two days off school while she went through the worst of it, but was back at school by the 29th.

On 6th February, Seren and Dylan had CF Clinic, and she got on very well. Her sats were 98%, her lung function was over 100%, she’d grown 2cms and she’d put on 1/2 a kg. But because of her height gain, it dropped her BMI centile back down to the 20th centile, so she’s still got some hard work to do to get her weight up. Thanks to the Omeprazole tablets though, she’s eating like a horse, the most she’s ever eaten, so hopefully she’ll put some more weight on soon.

We’d like to say thank you to Post Pals for the Blitzen and Rudolph cards, Seren especially loved them! Thank you to Helen Brierley, Sue & Ethan B, Jessica, Helen Brierley, Julie B, Kate Dee, Helen Bale, June Junko, Vikki, Helen T, Anne Gairn and Maria & Michael for the cards.  And thank you to whoever sent the anonymous Valentines card. Thank you to Kim Ginger for the postcard. Thank you to Michelle Kendal and Vickie M, and Jess the cat for the letters.

Thank you to Helen T for the Pixel Chicks babysitter, shrinkies, glitter pens, piggy bank painting kit, dancing polly pocket, finger print drawing kit, and for the Disney Princess DVD. Thank you to Claire McCartney for the Winter Minnie Mouse, hair bobbles, clips, lip gloss and eyeshadow. Thank you to Anne Gamble for the notepaper and envelopes, card making kit, notebook and card making equipment. Thank you to Abbey and Alison for the Bratz doll and perfume, High School Musical handbag, knitted teddy and fairy activity set. Thank you to June Junko for the cat calendar. Thank you to Hilary & Muffin for the High School Musical t-shirt. There were a few other Christmas presents which Adrian opened with Seren and he wasn’t sure who they were from, but thank you to whoever sent Seren the fairy sticker book, the sand art, the pendant, the Santa 3 drawer gift set, the paper flower funpack, Bratz stickers, lip gloss and the Disney Princess cup. Thank you to Julie B for the Power Palz rabbit game and toy, and for the stickers. Thank you to Helen Brierley for the underwater sculpting sand. Thank you to Helen Bale for the cuddly horse. Thank you to Vikki for the cat necklace. Thank you to Anne Gairn for the photo, pencils with toppers, pencils, ruler rubber and sharpener set and notebook. Thank you to Kate Dee for the cuddly Minnie Mouse and the camera. Thank you to Jess the cat for the Narnia book and activity book and rabbit keyring. Thank you to Julie B for the colour art kit. Thank you to Kim Ginger for the pencil, lip whistle, notepad, rubbers, bracelet, sticker and sweets.

Update 19th December 2008

From 17th to 19th November Seren was off school with a cold. She lost her appetite and was quite tired, but she was back to school on the 20th. On 1st December, Seren was off school again because of a bad day with her asthma on the Sunday. But she was doing better by the afternoon, so I let her go to Rainbows, which she enjoyed.

On 5th December Seren had CF Clinic. She hasn’t grown in at least 6 months and is still 120 cms (well, technically, she measured at 19.7 cms and she was 20.7 kgs which is 1 kg heavier than when she started her IVs in September, but she’s still very thin and on the 26th centile for her BMI). Her lung function was 105%, and her SATS were 100%. The doctor was very pleased with Seren, her chest was clear, her bowels and liver felt fine, and she is doing well at school. She has been complaining of occasional nausea and stomach pain, so I raised the question that she might have a slight problem with acid reflux. It’s something that is common in CFers, and something Dylan is still being treated for since 3 months old. Seren had very bad reflux as a baby, but then grew out of it, but lately has been complaining of random stomach-aches and nausea, so the Dr thought that it would be best to start her on Omeprazole. Hopefully, not only will the Omeprazole work on her stomach-ache and nausea, it should help her Creon tablets to work more effectively and help her to gain some more weight.

On 7th December we had a fabulous day in London, thanks to Post Pals giving us tickets to see Santa at Harrods! We went to the Natural History Museum first and then to Harrods and then on to see the Christmas lights on Oxford Street before getting the train home again. It was a fabulous day!

On 15th December, I had a chat to Seren’s teacher, as she’s been getting a bit stressed and upset about school and didn’t seem as if she was settling into her new school as well as we’d thought. Her teacher explained that the most part of the problem is Seren seems under-confident, and self-conscious about her CF and the effects it’s having on her. It meant that she went into her new school on IVs in September, it means that she’s missed some school, it means that she’s underweight, and it means that her stomach is bloated from her digestive problems, so she doesn’t like that her stomach sticks out in her clothes. Her teacher said that it’s more about Seren becoming more comfortable with herself and more confident in her friend-making abilities, than it is other people around her not accepting her or liking her. So we’ve got to work on her confidence.

Since then, Seren has been off school with a cold and looks very pale and washed out, but I’m hopeful that she’ll be well enough to continue with the Christmas festivities. Autumn has been an awful season for her, health-wise, and she’s never missed so much schooling before, so I’m hopeful that the rest of winter and next spring will be better for her.

Thank you to Jessica B, Jenn, Maria & Michael, Despina, Diane, Helen T, Martin, Jackie & Jamie, Julie B, June Junko, Sarah Gilligan and Post Pals for the cards. Thank you to Karen (Sami) and Jenn for the postcards. Thank you to Post Pals for the cards from the reindeer. Thank you to Julie B for the ‘decorate a Christmas tree’ pack. Thank you to Post Pals for the Polly Pocket Race to the Mall game and the stocking kit! Thank you to June Junko, Anna Gamble, Post Pals, Helen T and Claire McCartney for the wrapped Christmas presents. They are currently sitting under our tree waiting to be opened on Christmas Day!

Update 16th November 2008

Seren had CF Clinic on 4th October and she’d put on 300 grams (taking her up to about the 17th centile) and her lung function had gone up a bit more to 96.1%. Her consultant was concerned to hear how difficult the past month had been for her and how badly she’d coped with it all. He said that some time needs to be spent on helping her to come to terms with it all, and in reassuring her that her health is much better again now. Of course, we have been doing that to the best of our ability, but he didn’t say whether he wanted to get the psychologist involved. He also said that if her residual cough doesn’t clear up, or the bug comes back, then she might need a preventative nebulised treatment, but he said that she might not need IVs again for a good few years, which is what we’re really hoping. Then we saw the dietician and he put her on Maxijul to help her weight gain. She doesn’t mind having that in drinks, soups, spaghetti etc, so fingers crossed it’ll help.

On 10th October Seren seemed very breathless on the way home and again once we got home. She kept stopping in the middle of sentences to suck in another huge breath and even when she was just playing her DS or watching tv, she was still really over breathing. I gave her 5 puffs of Ventolin which helped her breathing and seemed to enable her to cough up some gunk, but she really worried me because the gunk was YELLOW! That’s a first for either of our kids. I rang the CF Nurse for advice and she arranged a hospital review for Seren for the next day.

We were very chuffed to see that Seren’s lung function was up again to 101% and her oxygen levels were 98%! The consultant examined her and her chest was clear, so he said that he thought that the breathlessness (which she’s never really shifted since the IVs finished) was possibly due to her asthma, and that as her lung function is up and her chest is clear, maybe the yellow mucus was just a plug Seren needed to shift. They did another cough swab, just in case, but he thought it was more asthma-related. So she had 5 puffs of Ventolin 4 times a day for 4 days and he gave her a prescription for steroids for three days to use if her breathlessness got worse.

On 17th October, Seren and I travelled to Wales to spend some time with my parents, because my Dad’s end of chemo scan showed up a new tumour in his abdomen, so we went to stay with them before he started his new chemo regime. Seren’s asthma was bad while we were there and I had to give her very regular inhalers. I was also wishing I’d thought to bring the steroids with me!

On 24th October, she came out with a temperature and a sore throat, so I delayed starting the steroids in case the throat infection was causing her asthma symptoms. Thankfully she was much better by the 26th.

On 3rd November, Seren was coughing a lot and said that she felt that she had something in her lungs that she couldn’t shift, so when we got home I gave her some Ventolin which seemed to help. She looked very pale though, with dark shadows under her eyes, and was complaining of feeling very tired. Her cough was quite chesty and she was starting to get afraid to cough as well, like she was with her bad infection in September, so she was starting to freak me out a bit. I wondered if it could be asthma-related, or to do with her flu jab she had last Monday, but I still rang the CF nurse that night and requested a cough swab.

On 9th November, Seren’s cough was really nasty again. I phoned for her swab results and it was clear of bacteria. On 11th November, I started Seren on the steroids, and she found them a bit difficult to swallow, but they made a HUGE difference to her chest! It’s been the best it’s been since she started getting unwell in August!

Seren also had a good report from her teacher at parents evening that night, saying that she is ahead of target in reading, and on target in writing and maths! Since she moved schools in September, the improvement in her abilities has been incredible!

Thank you to Kim, Julie Barrett, June Junko, Cathe Garnett, Margaret Nagy, Marge, Jenn, Linda B, Maria Carney, Diane, Milly P, Briannah Bolton, Kate Dee, Helen Brierley and Karen (Sami) for the cards! Thank you to Julie Barrett for the letter, the pencil, and the witch model. Thank you to Cathe Garnett for the cat picture. Thank you to Marge for the ‘Bless You’ token. Thank you to Jenn, Julie Barrett, Maria Carney for the postcards. Thank you to Diane for the stickers. Thank you to Milly P for the Webkinz cat. Thank you to Helen Brierley for the beads, and the story books and tapes! Thank you to Karen (Sami) for the bat whistle, pumpkin whistle, skull straw, rubber, pencil, pumpkin lolly, skeleton, and spider. Thank you to Heather Bergman for the letters and two packs of stickers! Thank you to Francesca for the stickers, pencils, pencil toppers, crayons and lion.

Update 27th September 2008

Apologies for the late update, but Seren has had the worst month of her life to date. She enjoyed August very much, but she started to develop a cough, so we increased her inhalers, thinking it was asthma-related.

Then from 16th to 23rd August we went to West Wales for a holiday paid for by the CF Holiday Fund. While we were there Seren’s cough worsened and inhalers didn’t really seem to be helping, but she seemed well enough in herself, so we weren’t overly concerned.

When we got back, Seren’s cough wasn’t improving, so I arranged for her to have a cough swab, which came back clear.  On 29th August she had a really bad day with her cough and even though the swab came back clear, I was very concerned about her chest, as she just couldn’t stop coughing and was getting very distressed, and she had some chest recession. I gave her repeated doses of inhalers, but it didn’t help at all. So we took her to the hospital. The first Doctor said that she had mild tonsillitis, but that wouldn’t have caused her ‘nasty chesty cough’ and so he wanted her to have an x-ray. By the time she’d had the x-ray, the Doctors had changed shifts and an incompetent Doctor said her x-ray was fine, her throat was fine with NO tonsillitis, and she could have some Augmentin antibiotics and go home.  As we walked down the corridor from children’s ward on our way out, Seren almost choked on her own mucus during a very bad coughing fit.

On 2nd September it was Dylan’s birthday and Seren was very poorly again that day and it was clear that the Augmentin wasn’t making any difference at all. Dylan’s main present was a bouncy castle and she couldn’t even play on it with him. Each time she tried, she’d get awful coughing fits and have to come back off exhausted. That afternoon Seren was very unwell again at Dylan’s birthday party, she couldn’t even play at the soft play zone, and she had to sit most of it out next to me, coughing and coughing and coughing. Her CF Nurse had seen her at a care plan meeting that morning at their new school and been concerned that Seren looked very pale and thin and had a nasty cough.

The next day was her first day at her new school and she INSISTED on going, so I dropped her off in the morning. I then rang the CF Nurse and told her how awful she’d been the day before and the CF Nurse said we should go into hospital for 12.30 pm for a review and she thought there was a 90% chance that Seren would need her first course of intravenous antibiotics.

At the review her weight had gone down yet again to just 19.6 kgs (which is lighter than she was a year ago!) putting her BMI on the 7th centile. Her lung function results had dropped from 109.2% to 74.9%. So her consultant put her on her first course of IV antibiotics, Gentamicin and Ceftazidime, and ordered another cough swab. This was Wednesday 3rd September. She had her first long line put in that afternoon (from her left wrist to her shoulder) and found it incredibly traumatic, due to her needle phobia. This line lasted until Thursday evening and then they saw a red line tracking all the way up her arm, indicating that the line was infected, so it had to be removed after her evening dose of IVs.

Friday 5th September, Seren had her second long line fitted (from her right elbow to her heart) and that lasted 25 hours before it clotted badly. So they had to remove it on Saturday morning and fitted a cannula in her left hand. By Sunday morning, her cannula was getting painful, and her cough swab came back showing a heavy growth of Moraxella Catarrhalis. The first bug she’s grown in four years and it was hitting her hard.

On Monday morning, she had the cannula taken out, because she was finding even just flushes (let alone strong antibiotics) through her line so painful that she was screaming, jumping, throwing things and kicking out. Monday afternoon, they fitted her 3rd long line, from her left elbow to her shoulder. This line lasted until Day 13 of the IVs, the 16th September, when it started leaking. It was leaking very near the point where it entered her arm, so she had to have it removed again.

Her health was reviewed again, and it was found that her lung function had gone up again to 93.7%, and her oxygen saturations had climbed from their lowest at 93% to 98%, and she’d put on 1/2 a kg, taking her up to 20.1 kgs. So it was decided that she could stop the IVs and move onto Ciprofloxacin oral antibiotics. She was over the moon, as she found the IVs to be the most difficult thing she had ever experienced, and she didn’t cope very well at all, so it was a horrible two weeks for all of us.

She is still on the oral Ciprofloxacin until 30th September and she does still have a wet cough, but cough swabs taken on 16th and 22nd September have both come back clear, which is a good sign that she has hopefully cleared this bug. She’ll have another swab done when she finishes the oral antibiotics and fingers crossed that will be clear as well.

Thank you to Julie B, Bronte Hughes, Nicky W, Sheila, Helen Brierley, Helen T, William M and family, Jenny Bridger, Clair Fraser, Kate Dee, Shannon & Liam, Post Pals, Linda B, Claire and Jane for the cards!  Thank you to Helen Brierley for the Hunchback of Notre Dame talking book, bracelet and dangly fish! Thank you to Helen Turner for the two fairy books, the multi-coloured pen and the fabulous get well soon balloon bouquet! Thank you to William M and family for the cuddly polar bear. Thank you to Jenny Bridger for the Kinder egg, egg cup painting kit, bookmark, nail art kit, flapjack kit and badge! Thank you to Clair Fraser for the Bratz stamper set, the Bratz secrets book and gel pen, the Bratz Cloe doll and perfume, the Bratz Jade doll and perfume, and the four Bratz activity books! She opened your parcel and Jenny Bridger’s parcel on the same day and afterwards, even though she was so poorly, she said “I’m the luckiest girl in the school!” so a HUGE THANK YOU to both of you.

Thank you to Kate Dee for the beautiful Hello Kitty balloon bouquet! Thank you to Shannon & Liam for the lovely drawings. Thank you to Jenn for the notecards. Thank you to Vickie M for the letter and stickers. Thank you to Becky Butler for the note and stickers. Thank you to an anonymous person for the two glow sticks, Seren loved them! Thank you to Estelle Jackson and family for the hair slides and nail varnish. Thank you to Karen (Sami) for the bracelet, lion puppet and Pooh bear toy. I’d also like to thank Clair Fraser for the card for us and Estelle Jackson for the face mask and nail varnish for myself. Much appreciated!!

I am so very grateful to Post Pals! My daughter has been going through a very rough time, but Post Pals brings so many smiles to her face. You cheer her up when nothing else can! Thank you.

Update 7th August 2008

Seren has had an up and down month, somewhat unbeknownst to her. She had her CF Annual Review on the 8th of July, which she was very brave for. Apart from a full bowel, he was very pleased with her. Her chest was clear, she hasn’t grown a bug in over four years, her asthma seems well controlled at the moment, and she’s growing well. She’s lost a bit of weight, she’s down to exactly 20 kgs, but hopefully we can build that up again.

The 11th of July was Seren’s sixth birthday and she really enjoyed her day, and she had soooo many cards!!!

On the 31st of July, we had Seren’s annual review results back, and they weren’t as positive as we’d hoped. The doctor dropped a bombshell – her x-ray result showed bronchial wall thickening at the bases of her lungs, which was termed ‘the earliest sign of CF’.

It has been explained to me that a person’s chest is like an upside down tree. There’s the windpipe, which then splits into two tubes, which then split into hundreds and thousands of little tubes, which cover the person’s lungs. In Seren’s lungs, the tubes at the very bottom of her lungs have started to thicken, so they are not as flexible as they should be, and won’t work as they should. I asked if this was anything we could have prevented, or if Seren now needs extra physiotherapy, extra inhalers, extra antibiotics, nebulisers, or anything. But no, Seren’s problem isn’t caused by mucus in her lungs, her lungs were actually completely clear of mucus. The changes are irreversible, and there is nothing we can do to stop it progressing.

The physiotherapist said it’s nothing to do with how well or not she’s been, this is the normal progression of the CF disease in her body, and that she’s done well to get to six years old before showing any signs of it. We had always assumed that as Seren had always stayed so well chest-wise, that she was managing to escape the effects of CF in her lungs, but obviously not. Although we’ve always been open and honest with Seren about her CF and why she needs her treatments, this is one thing we’re going to be keeping from her for a long time to come.

Thank you to Julie B for the cards and for the Polly Pocket car and the ‘Create a Sticker’. Thank you to Jenn for the postcard, and cards, note and Buttons cake mix. Thank you to Kate Dee, Jennifer C AKA Queen Lucy, St Matthews Sunday School, Michael & Maria Carney, Linda B, Jenny Orpwood, Hilary and Muffin, Erin F‚Äôs grandparents, Helen Brierley, Amanda, Rachel Cridge, June Junko, Isobel, Tracy, Gerry & Emily, Karen (Sami), Post Pals, Hayley Thorn, Jennifer and Grace & Linds for the cards. Thank you to Kate Dee for the painting by numbers, the cuddly elephant, the candy glosses, and the stickers. Thank you to Hilary and Muffin for the presents. Thank you to Erin F’s grandparents for the WHSmiths voucher. Thank you to Helen Brierley for the magic money box. Thank you to Amanda for the charm. Thank you to Rachel Cridge for the stickers. Thank you to June Junko for the dolls picture. Thank you to Karen (Sami) for the pencil, foam stickers, Coke stickers and Pooh stickers. Thank you to Sarah, Hope, Ellie and William for the card and stickers. Thank you to Grace and Linds for the mermaid bookmark. Thank you to Claire for the letter.

Update 7th July 2008

Seren has had a good month, and has been out and about and enjoying herself!  She’s got some very fun things coming up in the next month too, but she’s not looking forward to her Annual CF Review at the hospital on 8th July, because it involves blood tests and she hates needles. It’s basically a total MOT of her entire body, so it takes a long time. Luckily Nanny is coming with us to keep the kids entertained while I’m talking to the doctors, nurses, physio and dietician.

Then the fun starts, as it’s her birthday on the 11th July, and we’ve got lots of fun things planned!

Thank you to Karen (Sami), Jenn, Post Pals, Kate W, Diane, Fiona, Hayley Thorn, for the cards. Thank you to Despina for the postcard. Thank you to Jennifer C for the Queen Lucy letter! Thank you to Hilary & Muffin for the letter and the stickers. Thank you to Vanessa Lomas for the letter and for the laminated poster, the nail art stickers and the Disney stickers.

Update 9th June 2008

Seren has had a good month! On 7th June it was CF Clinic and Seren got on well. She’s now 117.6 cm tall and weighs 20.4 kgs, which means her height is on the 75th centile and her weight is on the 50th centile. Those measurements mean her BMI is on the 36th centile. Ideally, her BMI should be above the 50th centile, so we need to get some more weight on her. She had her lung function done, and her FVC was 98.5 % and her FEV 1 was 91.9% which is great. Her oxygen levels were fine too.

She was seen by the consultant and he was very pleased to hear that she is very compliant for her physio and her medications now and her behaviour has generally improved. When he examined her stomach, he could feel that her bowel was very full again (they found this in February) and he actually showed me how to feel for this myself on her, which was weird. He said that if she didn’t open her bowels over the next couple of days, that we should give her a week of Lactulose to clear her out a bit. She didn’t go that night, or during the day on Saturday, and I felt her stomach again that night and could still feel it all in there, so we gave her some Lactulose Saturday night. Thankfully, she’s been to the loo today!

He also asked how she’s getting on at school and we had to say that she’s a little bit behind some of her peers and that she is taking part in the extra reading group and was doing an extra literacy course. I also said that they were keeping an eye on her about possible symptoms of dyslexia. He wanted to know exactly what they were doing to help and seemed satisfied by my responses.

The dietician was a bit disappointed to hear that Seren hasn’t done too well with her task he set her of eating breakfast every morning and drinking milk every morning. I did say that she is drinking a lot more milk than she was, and he was pleased about that, but he did want her to try hard to eat breakfast every day. I said that most of the time she just picks at bits and pieces during the day, and then stuffs herself in the evening. So he said to just go with the flow and try and feed her up at night, to get her weight gain up, and to just do our best during the day. It’s so weird, you can’t get food into her with a crowbar until she gets home from school at about 3.30 pm and then she just won’t stop eating!

Thank you to Kim Ginger for the card and for the ‘Werepuppy on Holiday’ book. Thanks to Jenn, Fiona, Kate Dee, Helen T, Karen and Isobel for the cards! Thank you to Kate Dee for the horse postcard, the handwriting book, the magic painting book and the Lazytown colouring book. Thank you very much to Jennifer C for the letter from Queen Lucy of Narnia!  Thank you to Anne Gairn for the Kitty in my Pockets and secret diary kit! Thank you to Post Pals for the two parcels full of little bits and bobs! Thank you to Helen T for the two packs of Cutie Cubes!

Update 7th May 2008

Seren’s had quite a good month, health wise. The 21st April was Seren’s Parents Evening at school and a few concerns were raised. She is still struggling with her literacy. Verbally, she’s very advanced for her age and very imaginative, but she struggles with writing her letters the right way round and reading and spelling. She’s still young yet, but she’s behind a lot of her peers.

She is in an extra reading group at school to boost her confidence and she’s just started an ELC to boost her literacy skills every day, but her teacher has recommended that if she is still struggling by September, then she should start the ball rolling for getting tested for dyslexia, as she has a lot of symptoms of it.

She’s now just getting over a heavy cold, but it didn’t set her asthma off too much and she’s coped well with it.

Thank you to Helen F, Fiona, Jenn, Helen T and Kate Dee for the cards. Thank you to Rachel and Poppy the Snail for the note card. Thank you to Rachel Cridge, Seren loved the pictures of Mickey and Minnie. Thank you to Jenn for the postcard. Thank you to Helen F for the stickers. Thank you to Rachel Cridge for the stickers. Thank you to Helen T for the sticker book. Thank you to Kate Dee for the parcel. Thank you to Kate for the pink jewelled clip!

Update 12th April 2008

Seren has had a pretty good month! On 10th March we went to see the CF Specialist from Cambridge at Norwich.  She hadn’t grown or put on much weight recently, and she’s down to the 30th centile on the BMI growth charts (the goal is 50th centile or over) so we need to feed her up a bit at the moment. Her SATS (oxygen levels in her blood) were fine though, and her lung function was her highest ever, at 99%!

She generally had a good report, except that he said that if the Seretide and Ventolin become insufficient to treat her asthma problems, then we can start her on Singulair (Montelukast) like Dylan. Also, he said that her nose is still very inflamed and she doesn’t have good air entry into her right nostril, so she has to start the Nasonex/Flixonase spray again which she’s not too happy about, but as we told her, it should help her to breathe more easily. It worked last time, but I think this time she’ll need to be on it much longer.

On Easter Sunday, she had quite a bad asthma attack and had a nasty cough for the rest of the day, but we kept up the inhalers all day, and so by Easter Monday her cough had cleared up.

Seren has got a trip to the dentist on Thursday, but there aren’t any scheduled hospital appointments coming up this month, so fingers crossed it’ll be quite a quiet month!

Thank you to Karen (Sami), Kate Dee, the girls at Georgie’s Fund, Kate Ware, Anne Gairn, Julie B, Jenn, Erin F’s grandparents, Michael & Maria, Julie, Martin, Jackie & Jamie, Post Pals team, Eloise, Chloe G and Fiona for the cards! Thank you to Vickie for the inflatable postcard with the sparkles, Seren loved it! Thank you for the Easter card from Israel, I’m sorry I couldn’t read the signature to say thank you properly. Thank you to Sarah for the note card. Thank you to Anne Gairn and Kate Dee for the postcards. Thank you very much to Anne Gairn for the Littlest Pet Shop rabbit. Thank you to Karen (Sami) for the notepad, badge and ball. Thank you to the girls at Georgie’s Fund for the Make Your Own Sequin Art and the Tinkerbelle cards! Thank you to Anne Gairn for the Polly Pocket Kerstie doll and accessories! Thank you to Julie B for the glitter stencil kit. Thank you to Julie for the play jewellery! Thank you to Kate Dee for the lovely poodle and bracelet! Thank you to Clare Bray for the beanie cat, Seren adored him! And thank you to Anne Gairn for the stickers and the Ella doll.

Update 5th March 2008

Seren has had quite a good month. She has needed extra inhalers now and then when her asthma’s played up, but she has been good for her twice daily chest physiotherapy and in taking all her tablets lately too. I’m sure Post Pals has helped her here! Her appetite has been mostly good, but I don’t know if she has put any weight on since her last clinic in January. She’s going with her brother Dylan to see the CF Specialist at Norwich on Monday, so hopefully we’ll know more then.

She’s very worried about her grandfather though, who we call Bampie. It’s my Dad, and he was diagnosed with a spinal cord lymphoma on 28th February. We only lost my grandfather to brain cancer last June, and so she’s very worried about my Dad. She isn’t sleeping properly and is quite unsettled, especially as I travelled to Wales last weekend to be with him and I’ll be going again this weekend, so she’s having a hard time with missing me as well. We’re hoping to all go visit him during the Easter holidays, but if he does have the chance of chemotherapy, I’m concerned about how Seren will cope with seeing her Bampie lose his hair.

Thank you to Kate Dee, Jenn, Post Pals, Maria Carney, Anne Gairn, Susanna for the cards, and to whoever sent the two anonymous Valentines cards! Thank you to Sarah for the postcard.  Thank you to Jade for the letter. Thank you to Anne Gairn for the Design a Mirror, Design a Picture Frame and the Polly Pocket and car; and for the painting by numbers pack and Disney Princess sticker book and stickers! Thank you to Kate Dee for the Bratz pens and crayon by numbers. Thank you to Jade for the doll and the crown hairclips!

Update 30th January 2008

Seren hasn’t had too bad a month. She has had a few problems with her asthma, but apart from that she’s been pretty good. She’s been doing well in school as well!  Her dietician is very concerned about her diet though, as her zinc intake is down to 40% of what it should be, her iron is down to 60% and her calcium 80%, so we are trying hard to boost her intake of these foods. It’s tough though, as she’s an incredibly picky eater, and just doesn’t like many foods that contain these nutrients, so if she’s still low on these in another couple of months, we’ll have to start her on supplements for them.
She has CF Clinic on Friday 1st Feb, and I want to bring up her recent hearing problems. She has been saying for the past few months that the tv needs turning up and up, and she finds it difficult to talk quietly lately too, she always seems to be shouting. CFers can be prone to glue ear, and I had it myself as a child (I don’t have CF myself, I’m just a carrier, as is Adrian) and I had similar symptoms, so I want to get her ears checked.
Thank you to Denise Workman, Kate Dee, and Julie Barrett for the cards! Thank you to Julie Barrett for the book! Thank you to Holly Hall for the letter and photo. Thank you to Anne Gairn for the two letters, the fluffy star pen and the bead jewellery set.

Update 5th January 2008

Seren very much enjoyed the run up to Christmas, as she REALLY loved getting all the cards and parcels from the lovely people who sent them through Post Pals, they made her feel really special, and she really loved getting the letters from the Reindeers.

On the 23rd, she came out in chickenpox, and was very poorly with it. Her temperature kept shooting up as high as 40.3 C and she was horribly itchy, and calamine lotion and anti-histamines didn’t really seem to help. Her torso was plastered in spots and they all grouped together and they were really sore as well as itchy. So she was really miserable on Christmas Day and Boxing Day, and she was so pale, she looked like a ghost, but opening her presents made her smile a bit. She’s now feeling much better, and her scabbed spots are starting to go.

She looks quite thin though, so we’re trying to feed her up a bit, but her appetite isn’t too great at the moment.

Her asthma has been well controlled over Christmas, but the test will be going back to school and starting PE lessons again. She will be seeing the CF Specialist at Norwich on the 14th January, so we’ll have more info then.

Thank you to Kate W, Despina, Helen T, Post Pals team, Julie, Sue and Alan Barrett, Becki, Laura H, Wend, Jenn, Jon Paul, and Martin, Jackie & Jamie for the Christmas cards they sent. Seren loved opening them! Thank you to the Post Pals team who sent the letters from the Reindeers, Seren LOVED having them read to her, and looked forward to getting them. Thank you to Emma Hoole for the letter and reindeer food. Huge thank you’s to Kate W, Helen T, Wend and an anonymous elf for being Seren’s elves. Also thank you’s to Julie Barrett, Louise Woodcock, Chloe G, and Emma Hoole for the Christmas presents they sent, Seren loved them all. She was poorly on Christmas Day and opening her presents was the only thing that could make her smile.

Update 8th December 2007

Seren had CF Clinic yesterday and her consultant changed her inhaler from 4 puffs of Becotide 50 twice a day, to 2 puffs of Seretide 50 twice a day, as he said having to take 4 puffs twice a day long term would get on her nerves and so his choices were to give her the 100 strength of Becotide or switch her to the stronger Seretide. He chose the Seretide, as apparently Becotide is being phased out in the near future.

When he examined her stomach, he found that her bowel is very full of faeces, which is the first time anyone has ever said that after examining her. If left, it could cause a blockage in her bowel (called Meconium Ileus Equivalent I think) so he has prescribed her 10 mls of Lactulose once a day for a while to clear her out. CFers can have problems with their bowels at times, due to the lack of lubrication in the bowel, making it easy for the bowel to block, but hopefully the Lactulose will draw more fluid into the bowel and clear her out.

The dieticians are also concerned about her nutrition, as she’s never been the world’s best eater, and lately her diet has really gone downhill. She hasn’t had any form of dairy produce in six months now and that really worries me, as people with CF are very prone to osteoporosis, and start having bone density scans at aged 10-12, so calcium is very important to them.

She is also low on iron, so we have been told to give her a substance called ‘Spatone’ to boost her iron intake and we have to complete a food diary to show exactly how little calcium she is having, so that they can prescribe her an adequate supplement of calcium.

She also hasn’t grown or put on any weight, in fact, she’s lost a bit of weight, so we need to try and feed her up over the Christmas period. Her asthma hasn’t been quite as bad lately as it had been, but exercise is still a problem trigger for her. She had sports club after school on Thursday and she needed quite a lot of Ventolin after it. It’s still better than it was though.

Last week, the Fantasy Charity Fund and the Family Fund paid for all of us to go to Disneyland Paris for 3 days, and it was an amazing experience! She has been exhausted since we got back though, as there was an awful lot of traveling and walking involved in the trip, and she’s still recovering!

Thank you SO much to the fabulous Elf Kate W, and to Helen Turner, both of whom sent Seren some very exciting-looking packages! They are currently waiting under the tree for her and she can’t wait to open them on Christmas Day!

Seraphina has a phobia of music boxes and similar sounding music
Story written 2010

Seraphina was born by emergency section at only 25 weeks gestation and weighing a mere 760g. She fought hard and after 4 and a half months in Special Care she came home. The stay was short lived however, as after only 3 days she suffered a massive aspiration and was rushed to Intensive Care with an aspiration Pneumonia. It was there she was diagnosed with chronic Gastro-oesophageal Reflux. She was put on medication and fed by NJ tube but this didn’t help and so she had a fundoplication operation and a tube inserted a few months later. It was also discovered she needed supplemental oxygen. Since then she has put on weight nicely and developmentally progressed well mentally, but a lot more slowly physically. She was diagnosed with Cerebral Palsy (spastic diplegic) just after she was one.

Things were fine until she was 18-21 months old when she stopped making progress and lost all her speech, she became withdrawn and avoided eye contact. She lost the ability to walk and then stand.

She was hospitalised for almost 3 months last November with a twisted bowel /bronchiolitis and Pneumonia. She ended up on a breathing machine over Christmas and New Year and once again we didn’t know if she would pull through. However, she surprised us, and after emergency bowel surgery and a period on TPN she was able to come home.

She is in and out of hospital quite a bit with chest infections and bowel problems which is something she finds really frightening and she is on lots of medication (currently about 25 doses a day).

Recently we have found the reason for Seraphina’s loss of skills. She has been diagnosed with Rett Syndrome – a horrible Genetic disorder which mainly affects girls. She cannot speak anymore but is beginning to communicate using eye-gaze and will let you know in no uncertain terms what she likes and dislikes. She also has a very infectious giggle and the most wonderful smile which lights up the room!

Update 23rd November 2022

Healthwise Seraphina is probably the most ‘unstable’ than she’s been for some time.
Back in May she had exploratory surgery/ biopsies done to try and find a cause for her pain. This revealed that dispute immunosuppressive treatment and steroids, Seraphina’s bowel was full of bleeding ulcers. Clearly her treatment had stopped working. She has climbed the scale of pain medication & is now on pain patches, morphine and gabapentin to try and keep her comfortable.
We also found out her scoliosis had progressed ( another source of pain).
She was put on more steroids both oral and IV. Unfortunately a side effect of this was spending the next 2.5 months on IV antibiotics due to back to back infections and see sawing blood sugar levels which required trips to hospital.
She’s also having investigations into her kidney function due to repeated Urine infections and it has been suggested that she may benefit from a permanent catheter.

We also have an appointment at the beginning of December with the surgeons to discuss complete removal of her bowel as it’s thought the disease load is too much for her body to cope with and contributing to us not being able to get on top of her inflammatory bowel disease and arthritis. Currently we are having more fluids IV as she’s not tolerating full feeds and have been having issues with low potassium levels due to increased output from her stoma/ stomach.


Today we found out that her IBD and Arthritis is affecting her eyes and is the cause of the redness/ soreness/ photophobia she’s been getting .
She was due to have more steroids today to try and reduce inflammation but frustratingly the doctors have discovered she has another infection so she can’t have the steroids, instead it’s more IV antibiotics which means that instead of going somewhere nice for her birthday she will be stuck on IV’s. I’m so sad for her right now as we were so hoping to celebrate her 16th Birthday doing nice things.

On a positive note her OT secured funding for a lovely electric reclining armchair which she has just had delivered and she calls it her ‘throne’… she says she’s a real Princess likes wearing tiaras/ crowns and thinks it’s funny when we call her ‘Your royal highness’ 😄

Seraphina now loves Encanto, collecting sparkly tiaras (she calls them princess crowns), the colour pink and hair accessories.

Thank you to everyone who has taken the time to send Seraphina post. It really does make a huge difference to her and it’s so lovely that she is being thought of. 

Update 30th March 2022

.Seraphina has had a bit of a tough time the last few months with infections & arthritis flares.
Her inflammatory bowel disease isn’t well controlled either. Initially her morphine dose was increased to help with pain control from this.

She had a review of her scoliosis which once again has progressed, however only slightly so once again it’s a waiting game to see what happens in the next few months as she gets closer to 16. The knock on effect of a worsened curve is that her jejunostomy now sits in a ‘dip’ due to the way she sits and is constantly leaking/sore & gets repeated infections which isn’t fun for Seraphina. We do have dressings and cream to help with this. She also now has a moulded wheelchair to help support her in a better position.

In February her gastroenterologist whom she’d had since a few months old, left the trust so we now have a new one. Thankfully she seems lovely and on meeting Seraphina she ordered a whole list of tests which we are waiting on results for & has also referred her to the pain team as her morphine isn’t currently controlling the pain from her bowel (which has started bleeding again intermittently).
They are also considering switching her immunosuppressive treatments depending on these results. At the moment she is also on IV steroids but this isn’t something that can be considered long term.

The other thing Seraphina is currently struggling with is pressure sores… because she’s not been absorbing feed as she should, she has lost weight which means she developed sores on the base of her spine. We are currently treating them with cream and dressings but long term higher grade pressure relief is being looked into for her bed and chair.

One bit of good news is due to our new OT we have had funding agreed for a brand new specialist care cot for her.. she was even able to choose the colours for the padding… she’s gone for a rainbow theme with 10 different colours (one for each panel around the sides of her cot ). She’s a big fan of rainbows & things that sparkle so we’ve bought her a sparkling rainbow blanket to go with her cot when it arrives!

Thank you to everyone that has sent Seraphina post recently, she absolutely loves receiving it and it really does bring a smile to her face even on the toughest days! We have to sing the “we just got a letter “ song from Blues Clues each time post arrives!

Update 17th October 2021

Seraphina has found the pandemic situation extremely hard.. We started shielding at the beginning of March 2020 and due to her state of health & immunosupression we were advised to continue shielding until she has had all 3 vaccinations… currently she has had only one so trips outside even within our little estate are very few and always with a mask etc.

During the past year she has needed two surgeries one of these was during the first lockdown to replace her current central line with a bigger one.
We also now go into hospital every 4 weeks for an infusion of a stronger immunosuppressive treatment along with IV steroids to try and keep her inflammatory bowel & arthritis under control as well as her weekly injections at home.

She still experiences intermittent bleeding from her bowel & pain from her reflux and the hospital is aware that she needs another endoscopy/ colonoscopy but are holding off until it’s safer to do so. She is still having iron infusions when necessary.

She has had a spinal review which has shown her scoliosis has progressed and she has been cast for moulded seating to help with her positioning and hopefully make her more comfortable when sitting.

She has also had an orthopaedic review as there was some concern over whether her hips were in the sockets correctly, thankfully yes, they are. The pain she is experiencing is from arthritis in one of her hips.
Thankfully her morphine dose was increased at the beginning of this year to help her cope with the various causes of pain/ discomfort she has.
All this combined with being prone to repeated infections ( as I write this she has just been started on another course of IV antibiotics) has meant that at the moment she has become quite down at times despite our best efforts to keep her entertained & distracted.It can be very difficult getting her to understand her situation as she it in effect ( mentally) a 5-6 year old in an almost 15 year olds body!!

We have decided to rejoin Post Pals to give her a bit of a boost & so hopefully she realises she’s not on her own & people are thinking about her & hopefully make her feel a bit brighter.

Update 20th May 2019

Seraphina and family have taken the decision to move on from post pals.

Update 24th April 2019

Seraphina is still very much in and out of hospital with infections so life has been quite busy, although we are thankfully able to do IV antibiotics at home so she hasn’t stayed in longer than necessary as we can continue treatment at home.

She is currently feeling a bit sorry for herself as she needs a transfusion due to bleeding, but that is hopefully happening on Friday so she should perk up a bit after that.

 Her arthritis is still not well controlled and now neither is her inflammatory bowel, so once again on Friday we need a way to move forward with treatment. Her hands are particularly swollen at present.

We haven’t been able to go out and about much due to infection risks (we had a phone call to say her white cell count and neutrophils were too low), however we did bite the bullet and take her out on Easter Monday to a local Easter Egg hunt at a country park where she was able to find plastic eggs and then (thanks to a lovely lady in the bookshop ) exchange them for a story book of her choice instead of chocolate 🙂

Thanks to everyone who has taken the time to send Seraphina cards and gifts. She really does appreciate them!

Thanks to Wendywoo for the Easter bike bag holders, Nicola for the Easter decoration & Maya Palmer Green for writing Seraphina a little story.

Also special thanks to the Pencil genie for the lovely Chihuahua drawings! 🙂

And thanks to PostPals again for the musical hippo light show which is still put on EVERY night and in the daytime when she’s in pain even with sore fingers she can still switch it on 🙂

 

Update 17th September 2018

It’s been a very busy few months here. Seraphina has been backwards and forwards to hospital quite a bit with various infections (mostly UTI’s) and needed IV antibiotics. She also had some investigations done under anaesthetic as she had some bleeding from her oesophagus despite medications added in for suspected return of reflux.

The results of these were that yes she does have bad reflux again, however she has had 3 operations called ‘Fundoplications’ previously as well as multiple other surgeries so it was felt by the hospital to be far too risky to try and do another as her risk of rupture/other complications due to the fragility of her GI tract/scar tissue is very high. Her gastrostomy is now on drainage all the time to try and prevent aspiration, however despite this she is uncomfortable most days so we need a plan regarding this.

She has also been having a reaction to one of her immunosuppressants, and her arthritis isn’t at all well controlled at present (another cause of pain) so it has been decided to put her on steroids to try and get a handle on things and if things haven’t improved by the beginning of November we will have to discuss alternative treatments.

As a result of her being uncomfortable for various reasons she has unfortunately started to ‘self harm’ in the form of repeatedly scratching her palms/trying to bite, so we have been advised to have a referral to a specialist OT who can perhaps provide wrist splints to try and protect her hands a bit whilst we try and get on top of the discomfort.

In other news, Samuel has finally got help at school having got a diagnosis of Autism. This is a huge positive step as he has been struggling but school are being very good with him!

Thank you to everyone who has sent post to Seraphina, Samuel and Eve! Special thanks to Quangle Wangle for the beautiful bile bag holders & Beverley Rudd for the unicorn lights!

Update 16th March 2018

Since the new year quite a lot of time has been spent trying to transfer all her care over to our new area, not quite managed all of that yet as funding needs to be agreed for new syringe drivers etc but getting there slowly.
Of course in the midst of this Serapina decided that she woould scare myself and her sisters by suddenly losing consciousness in her bed and require an ambulance…. it was discovered that she is having issues maintaining her blood sugars, we already knew that she could drop her blood sugar quickly but now we are having high blood sugars as well. we now have a ketone monitor as well as a blood sugar monitor to help keep an eye on this while they work out the cause, she has had various tests including a scan of her pancreas.

Seraphina has had quite a few hospital trips monitoring her scolliosis… she has now slight rotation in her lower spine, her Arthritis ( one of her immunosuppressant has been doubled ) and her weight/gastro function.
Thank you to everyone who has sent her post especially Ellie Ewbank, she loves the girly parcels and the photo of the Labrador who had shredded a load of presents really made her giggle!

Thank you also to whoever sent Samuel the guiness book of records gamers edition.. that was a HUGE hit!

Big thanks to everyone who sent Eve post for her Birthday.. th Harry Potter stuff was an extra special treat and really helped as she is struggling to settle into her new school and misses her friends in her old school.

Thank you again to everyone who has sent smiles to our family.

Update 30th November 2017

Seraphina initially had a rough few weeks with gut issues & not feeling great. We are moving house in 2 weeks and so been liasing with local services to get them transferred to a new area. This has actually worked out well as her height and weight have been reviewed in light of her not being able to absorb as much feed and she’s been put on an additive which we put in her tube feed to help her gain weight & is on monthly ‘weigh in’s’ to keep track. Couldn’t quite believe that she is actually 5 foot tall now!, such a huge difference to the tiny 1 lb odd preemie who fitted in my hands!.

She’s also now got a new wheelchair with gel padding and memory foam in the seat & back to help protect her hips/ bottom & spine from pressure. She’s just celebrated her 11th Birthday, thank you so much to everyone who has sent her post. We are up in Sheffield again shortly to see the spinal surgeon again regarding her scoliosis so hoping it hasn’t progressed any further.

Update 31st July 2017

Seraphina has unfortunately lost most of her mobility now. She was assessed for a walker back in March but when it arrived in June she was no longer able to use it. Her legs have been splinted & she has special boots which we hoped would help along with extra straps on the walker to support her but it’s just too much for her and so she is now 100% wheelchair dependant.

She has also been unable to go horse riding which is something she has missed a lot but currently she isn’t strong enough from a trunk control point of view and her lack of mobility causes issues.

We’ve also had an increase in seizures & she has gone very thin. After discussing with one of her consultants he suggested it may be a progression of Rett syndrome as she begins to hit puberty. Increased seizure activity, muscle wasting & loss of mobility along with increased breathing abnormalities can be symptoms at this time.

She has been cast for a new improved ‘Sleep pod’ with gel cushion inlay along the base of her spine to help with the pressure sore issues associated with her being so much skinnier.

We also have an appointment to reassess her wheelchair as her lack of trunk control & scoliosis means that it’s no longer offering her enough support. We are hopeful that they will come up with something to make her more comfortable.

As we are still struggling with keeping Seraphina comfortable despite regular catheterisation she is now on antibiotics each day which should keep infections at bay. Unsure at the moment if she is on the correct one as she’s still quite uncomfortable at times but leaving it a bit longer and using regular pain relief to help.

Update 29th March 2017

Seraphina is generally doing ok from a gut point of view. We are managing her symptoms pretty well with her medications and iv’s. She has just had another transfusion to boost her iron levels which still regularly drop.

She is due to be admitted for an open ended/ long stay on 9th April under Urology/ surgeons as she is still having issues in this area & blood sugars , so we are gearing up as a family for having a period of time apart.

Seraphina’s condition is lifelong and will always have up and downs/ new developments and therefore after a lot of consideration we have decided to leave Postpals and give some of the sicker children like those with cancer that Postpals is more geared towards, a chance to benefit from everything that makes Post pals so special.

Thank you so much for all the cards/ post, love & support Seraphina and her siblings have received

Update 18th November 2016

Seraphina has been up and down to hospital a bit over the last couple of months with urine infections, gut flare up, urology investigations and more recently investigations into her adrenal gland function as there is a concern that it is no longer functioning as it should be and whether this is the cause of her sudden drops in blood sugars. We are waiting for the results of these tests.

She did manage to go on one of the fantastic Post Pals Chessington trips which she really enjoyed, especially seeing all the animals. Thank you to Nationwide Building Society in Northampton, Swindon and Bournemouth for Seraphina’s parcel of comics, cards etc and to Chayah Nechama Brontin for her lovely letters/cards.

Update 7th June 2016

The new drugs for Serphina’s arthritis seem to be working well and she is tolerating them without nasty side-effects which is great news.

Seraphina has been not doing great gut-wise, she has struggled with her intake of feed and has had two bowel bleeds which meant she had to go into hospital to have a transfusion. She has been very tired and wanting to spend a lot of time in bed again and has dropped a centile on her weight chart. Her blood sugars have also been erratic and the dietician /consultant believes she is ‘dumping’ her feed which means she sweats/blo0d sugar drops and she doesn’t absorb any of the calories/nutrients. She has been referred for investigation on her pancreatic function to see if her body is able to produce the right amount of insulin.
She is also having continuing problems with bladder and kidney function and it has been suggested that her bladder is behaving just as her colon did when it started to fail. She has been referred to a specialist urologist and has been on IV antibiotics and 24 hour IV fluids for the last week along with 2 opiates for pain relief.

Update 22nd January 2016

Unfortunately, Seraphina was poorly all over Christmas. We had an emergency consultation with her Rheumatologist on Christmas Eve, as Seraphina had had a line infection and urinary tract infection for which she had been on IV antibiotics and this had meant she couldn’t have her arthritis/gut injections. By Christmas Eve she was unable to stand as her joints had flared up badly and she was just lying in bed crying with pain. She was also unable to tolerate any feed at all so back on IV fluids and needing Glucogel/IV glucose to control her sugars. Thankfully, her Consultant suggested some tablets to help with her inflammation and pain and within 48 hours or so her pain was more manageable.

We were back in Sheffield at the beginning of January where she had an assessment by the whole team. Unfortunately, after this recent flare she has been left with restricted movement in both knees and both elbows.
From a feed point of view we continue to struggle to get her to tolerate enough and questions have been raised about putting her back on to full TPN. However, we are hopeful that once her new injection has had chance to take full effect she will tolerate more and regain some of the weight she has lost.
Her physio has been out and her sleep system has been sent away (and returned) after being made more comfortable and safer for her when spending extended periods lying down. Hopefully we won’t have any more pressure sores on her back.
Thankfully, she has started to make progress over the last week or so and we are having a bit more time out of bed again since restarting all her medications.
Thank you to everyone who has sent Seraphina happy post over the last month!

Update 29th November 2015

Seraphina has had a rough few months so is rejoining Post Pals. She had an emergency hospital admission in August with all the symptoms of an obstruction, which triggered her seizures. The hospital rehydrated her as she had lost a lot of fluid and she was discharged back on TPN (intravenous feeding which she has been on for 4 years). The consultant is querying whether it was another volvulus (intermittent twist in her bowel), but as yet we are unsure unless it reoccurs.

When Seraphina had recovered from the admission we tried tube feeding her again but she continued to struggle to tolerate enough calories and fluids. She had begun to have problems passing urine, so the decision was made to put extra fluids up intravenously each night.

Seraphina’s arthritis was also causing problems with her hip and lower back and investigations showed that she has crumbling arthritis in her hip and it is still active despite her injections.

As it currently stands, her gut is also flaring monthly so we now have glucose, potassium, etc., in intravenous bags to rehydrate her and give her gut a rest when she stops tolerating feed. She has also begun having more problems with suddenly dropping blood sugars, so we have Glucogel for these instances.

Two weeks ago we began trialling another drug (a biologic one) to further suppress her immune system and try and get a hold on the bowel and arthritis issues, as she had become too tired to horse ride. She only managed a couple of hours up out of bed each day before needing to go back to bed and lie down and rest. Unfortunately, just as the treatment started she developed an infection round her central line (the line which goes into her heart) and so she has been on IV fluids and 3 x 30 minute infusions of antibiotics each day to try and clear the infection. A side effect from this has been that she has not been able to have any of her immunosuppression/arthritis drugs and her tummy and joints have been particularly painful. She has had a few days of being rather upset.

We are hoping that once the antibiotics finish she will be able to restart her medications but, until then, she is requiring lots of pain relief.

Update 24th March 2015

Seraphina has made significant progress on enteral feeding since she had her ileostomy and fistula operation and is managing periods of tube feeding again. There is some concern about her managing to maintain her weight off TPN completely but she is being closely monitored. Unfortunately she has started having bowel flare ups again and her arthritis is not very well controlled, even though her colon is de-functioned, and we have had a couple of episodes of bleeding. The option of complete colectomy has been discussed again and may be something we have to consider, as is adding a biologic drug as well as her other drugs, to further suppress her immune system and control flares.

She has also got a back brace now as her scolliosis (spine curvature) has progressed. So far she’s not too impressed with wearing this.

Despite all that has been going on she has maintained her smiley, giggly outlook on life and is still doing her horse riding which is the highlight of her week. Home schooling is also going well. She now has her own eye gaze unit and is learning how to use this to communicate at home.

We have decided to move on from Post Pals now but want to say a big thank you to everyone who has sent Seraphina and her siblings post and created many smiles over the years.

Update 9th July 2014

As I type this update Seraphina is in theatre. She is having her bowel de- functioned as it no longer works. She is also having some procedures done on joints which still have active arthritis despite the many medications she is on.

Mobility-wise she has been miraculously back on her feet without the use of a gait-trainer and has even begun to do horse-riding with her wonderful Carer holding her on the saddle. She absolutely adores the ponies and anything to do with horses or ponies is a hit right now. She has also been learning how to use Tobii eye gaze technology and has such a lot to say! We are currently fundraising in association with The Sequel trust to raise enough to get one of her own.

We are praying this surgery works as it is her very last chance to be able to feed again.

Update 8th March 2014

Seraphina continues to have pain and problems with her bowel/sepsis including one very nasty episode at the very end of January which involved her being transferred from High Dependency in Coventry to Birmingham Childrens as she was too acute to transfer to Sheffield. The sepsis once again was found to originate in her bowel. She also suddenly lost the use of her right arm which also became very painful, so bad in fact that her morphine infusion had to be changed to Fentanyl and Ketamine just to try and keep on top of the pain. She was eventually diagnosed with Rheumatoid Arthritis (sparked off due to her inflammatory bowel disease not being well controlled) and given IV steroids to bring down the swelling in her joints. This worked well until it was stopped and the effects wore off… then both her arms and legs, fingers, knees, etc, all swelled up and became painful. So strong anti-inflammatories were prescribed to try and bring it under control.

The last few weeks have been a balancing act to just keep her stable until her admission to Sheffield for multiple procedures on Sunday (9th March) with surgery on Monday. We are praying that all goes smoothly and we end up with a positive plan of action/way forward in her treatment both of her IBD and Arthritis.

Thank you to Kerry and Mark for Seraphina’s story books and bookplates especially the ”Tangle Fairy”… you must have seen Seraphina’s hair first thing in the morning!! Also thanks to Karen and Toni for the lovely Webkinz Koala.

Update 12th September 2013

Seraphina is still very much up and down and for the last few months has developed unexplained temperatures/repeated sepsis associated with her bowel. She has been in hospital several times with these and once ended up in HDU/ICU. She has had a lot of her medications increased and switched to an IV form as she wasn’t absorbing well through her gut.

We had a conversation with GOSH gastro consultant and a letter saying they were unable to treat Seraphina as they didn’t feel they could offer anything to improve things which was a big blow as we had pinned our hopes on GOSH ‘specialists’ being able to improve her quality of life. We are now waiting an admission to Sheffield Children’s to reassess her bowel and look at possible removal of her colon.

Meanwhile, her sister, Lydia, is having surgery on her legs on the 25th September. However, during the pre-op they found a problem with her heart which may need corrective surgery. We have an appointment about this on 17th September. Understandably Lydia is quite anxious about this and her operation.

Huge thanks to Kim Lawrence for Seraphina’s monthly projects and the wonderful cushion. Thanks to Karen (sami’s) friend for the little toy baby unicorn too.

Update 6th June 2013

Yesterday Seraphina was rushed to hospital with septicemia and placed in ICU. She had the night from hell with fits, heart rate of 180 asleep ,temp of 40.5 and struggling to breathe. They have decided to stop using her central line and cannulated at 3am. Temp now responding to paracetamol and lower. Slight technical hitch is she’s no longer weeing despite fluid boluses and blood pressure still low. So puffy she can’t open her eyes properly, bless her.

Update 10th May 2013

Seraphina is going through the mill a bit. She’s currently on 9 intravenous drugs a day. She is fighting a kidney infection and a staph infection/cellulitis around her line. She has had her morphine levels increased and now her bowel has started with a nasty flare up. Sheffield have started her on high dose steroids today to try and calm things down as she is having significant bleeding in her bowel. She is quite drained and fed up and teary today.

Meanwhile, her sister Lydia (who has scoliosis and syringomielia) has had her orthopaedic review and they have decided she needs something done surgically on her legs. There are two options for surgery but both involve being in plaster from hip to toe for about 8 weeks. Understandably Lydia is more than a little worried about this. Your prayers would be much appreciated for both girls. Thank you.

Update 8th May 2013

Seraphina has been very much up and down over the last couple of months. Some days have been brighter than others. At the end of March we went to Great Ormand Street hospital for an assessment. En route, Seraphina decided to stop breathing so we were ushered off the motorway and ended up being blue lighted to hospital with a police escort! The cause for this episode was found to be a urine infection, of all things, which triggered seizures. The assessment was very thorough, the consultant said they had seen only one other child like Seraphina. Unfortunately they had not managed to ‘fix’ the other child which was a bit of a blow. We are now waiting for an admission for further tests, although the general opinion is that colectomy is the way to go.

Sheffield have also seen her and due to increasing bowel pain they have increased her morphine and added in some other intravenous drugs. As I type this she is battling two infections… another urine infection and now an infection around her central line which we are hoping hasn’t spread into the line as well. The last couple of days she has been sleeping more and tiring much more quickly which she finds frustrating as she wants to do stuff but her body just won’t let her. We are praying for an improvement soon.

Thanks to the Lawrence family for the lovely Tiger who came to tea story sack.

Update 22nd January 2013

Seraphina had a good Christmas health-wise, she remained pretty stable and her Christmas present to us was her starting to walk (something we had been told she would never do). She is very wobbly but it is so fantastic to see.

Just now she is struggling again. Under the hospitals direction we decided to try and see if her body would accept blended food in very small amounts, with a view to reducing and eventually getting her off TPN. It seemed to go very well for a short while and her stomach emptied, but it seems that her bowel just doesn’t want to function and so in effect we just ‘fill it’ with food which doesn’t go anywhere. She then needs laxatives, gut medicine and suppositories to get it to come out the other end. Her Consultants are still wondering if she would be better off if they removed her colon but GOSH experience with Rett girls says that the bleeding etc just moves up to the small bowel and stomach in these cases, so it is difficult to know what to do for the best. She’s having increased gut pain requiring morphine and today bleeding again from her bowel, and she also has Ecoli in her urine which still hasn’t gone despite two courses of antibiotics.

We were also meant to go up to Sheffield for a transfusion but unfortunately this has had to be postponed due to the snow, with a result of Seraph being increasingly breathless and dizzy, so she’s not feeling great. She has cried on and off all day today which is definitely not her, so she must be feeling rubbish. Praying that a new date isn’t too far away.

Thank you so much to Seraphina and her siblings Christmas Elves. Your lovely presents and cards raised many smiles. Thank you also to the anonymous person who sent a parcel of crochet goodies including a black cat and a little rucksack. They are beautiful and must have taken so much time to do – so thoughtful.

Update 22nd June 2012

Seraphina is still waiting for admission to Great Ormond Street. Sheffield have said that there isn’t anything more they can do for her and so a second opinion has been sought from GOSH. Unfortunately GOSH have had a bed situation and Seraphina’s admission has been cancelled twice so far. She is still totally TPN fed. She is also now on IV medication twice a day as she has had problems with persistent hives and itching. She continues to have bleeding intermittently and she has had problems with pseudo-obstruction in her bowel, the periods of ‘stability’ are becoming shorter. It was decided a few weeks back that it was time to start morphine at home and so this has been the case. The Morphine has helped a lot with the increasing amounts of pain she is in when her bowel flares up.

From a motor skills point of view, she has learnt how to sit upright on the sofa aided and stand up from there too which is fantastic.

Seraphina still continues to amaze us with her love of life and smily disposition despite all she has to cope with.

Special thanks to Claudia from Germany for the Princess Lillifee stuff which really made Seraphina smile and to Rosie Montague-Vaughan for the box of birthday presents you sent for Seraphina’s siblings – that was such a sweet thing to do.

Update 19th June 2012

After a three month stay in hospital Seraphina is home. She loves being back home with her family and her ”coming home present’ was not one but two gorgeous Ragdoll Kittens called Cherub and Cupid… these little fellows raise a lot of smiles (especially when they are being naughty!).

She has now got confirmed chronic intestinal failure and is totally TPN dependent. We have had to learn how to do IV’s and take blood and urine samples weekly, sometimes more often. Seraphina continues to suffer from bleeding in her bowel, multiple infections and pain for which we have potent morphine based medicine. Unfortunately her iron level has dropped quite sharply again and so she has to have quite a long transfusion again next week (Tuesday). We’re praying that she is well enough to go to the Post pals party on the 30th June!!

Thank you for our Post Pals post and to Alex Stiles Welch for your lovely letters/cards and to Karen Winch for the bits for the Kittens.

Update 27th February 2012

Seraphina was admitted to hospital 9 days ago. When we got admitted Seraphina was in a poor state, she wasn’t tolerating feed or dioralyte, she had diahorrea and every nappy contained blood. She was sweating with pain and nobody really knew what was going on. She had bloods done and was out onto IV fluids via her port. After a chat with the consultant they went to book an endoscopy and colonoscopy for the 1st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.

She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.

When it went off I went down expecting to be called straight in to see her. I wasn’t though – instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That’s when alarm bells went off.

He explained that their findings had been extraordinary. Seraphina’s colon was visually like bubble wrap, so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation. The surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel. He did. Unfortunately when he took the biopsy he described it as ‘trying to biopsy cling film’ and her bowel perforated. He said that Seraphina’s bowel was so bad that it would never recover and she would not be able to be fed via tube again… it would be TPN only (which is feeding via a vein).

In the days that followed Seraphina required more and more morphine and other pain medication had to be added in. She bled out of her gastrostomy, her heart rate dropped very low, so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.

Saturday was an exceptionally bad day… her bowel spontaneously perforated again and we were told it could happen again at any time. For safety’s sake she was already on multiple antibiotics.

Today has been better – she’s still on morphine but not needing as many boluses and has sat up in her chair for a while.

The plan is a long one. On the 22nd of March she will go back to theatre to see if the weeks on TPN has improved her bowel any. She will have an endoscopic evaluation, something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds (this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic), she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock… total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. If the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides. So we are in another 3 weeks until surgery and then they have said around another 7 weeks afterwards… a loooonnnng time.

When she comes out she is going to be spoilt… she has wanted a cat for a while and so by hook or by crook I want to get her one. Bless her, even on the worst days when lying lethargic and worn out from pain, the nurse said to her “are you getting a kitten?’ and her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess. Somehow we will find the money to buy her one. It’s the least we can do after all she’s going through.

Thank you for all the precious people who have supported us through this week. Thank you for all the prayers too… it’s so good to know that there is such a cry to heaven going on for my gorgeous girl.

Update 18th January 2012

Seraphina had a good Christmas and new year despite her tummy being poorly for part of it. We were all very glad to be home together.

Since then her tummy has been causing her more distress resulting in three bowel bleeds last week. The nurses have come out to see her regularly and believe its time we had morphine available at home to help her cope with out breaks of pain. It also seems her port-a-cath has stopped working. We were seen at Sheffield yesterday as a result of her bleeds and not being able to tolerate feeds again. She has been given more steroids and pain relief and we have signed consent for her to have a colonoscopy and endoscopy with biopsies and her port changed. They are also going to arrange for her teeth to be looked at under the same General Anaesthetic. We won’t know for definite until after the surgery but the Gastroenterologist believes that Seraphina’s residual colon is just not working any more and has mentioned that the best thing may be to remove it all together. However, this is a big operation and so we are understandably very anxious about this possibility. We have been told her surgery will be in the next 2-4 weeks and so are just waiting for the call now to go in.

A big thank you to the children’s’ Christmas Elves for making their Christmas extra special. Thank you also to Lydia’s Elf for the lovely fluffy socks and foam bath for me, both were put to good use!

Update 10th December 2011

Seraphina has been in and out of hospital a lot recently. She has been diagnosed with a type of inflammatory bowel disease which means that she has been bleeding in her bowel. She has had a blood transfusion and a little while being fed by TPN. Now she is tolerating half strength feed. She’s also on long term steroids and immunosuppressants to keep the inflammation in her bowel down, which at the moment require weekly blood tests. Despite this she has a lot of tummy pain and diarrhea episodes which leave her drained. She is also very susceptible to infection now which means we have to be very careful with her and if she gets a temperature take her to hospital straight away. She has also developed a hernia over a past bowel operation site and so will need that repaired in the New Year.

On a positive note, a couple of days ago Seraphina took some steps all on her own which we are really thrilled about as she lost the ability to walk at 18 months when she went through Rett syndrome regression phase… what a STAR!! 🙂

Update 9th October 2011

Seraphina’s pain has been well controlled most of today. The plan is bowel rest and iv meds and to try dioralyte again on Monday.

Update 7th October 2011

Seri is now on continuous pump of morphine as iv bolus did nothing. X-rays showed grossly distended bowel and what they think is a perforation. We have got to go for more x-rays.

Update 5th October 2011

Seraphina went to theatre, the consultant said her colon is grossly abnormal; her entire colon is inflamed, raw and bleeding. It looks like we are going to be in hospital for the long run.

Update 3rd October 2011

Seraphina was rushed to hospital; her HB is so low due to internal bleeding that she is in danger of a cardiac arrest. She is being admitted for emergency transfusions and investigations. She is extremely frightened and anxious to the point of being sick when anyone comes near her.

Update 21st June 2011

Seraphina has been home for a month now. We are still having ongoing issues with her gut. She has been diagnosed with chronic intestinal pseudo-obstruction and we now have a rectal tube that we have to use on a regular basis to ‘deflate’ her bowel. The long term plan is to have a third stoma placed in her bowel, but this is a big operation for her and so she needs to be a bit stronger before we do it. She is rather skinny and gets tired quickly at the moment but she is still smiling and that’s the main thing.

I have updated her blog now so apologies for those who were waiting for an update.

Update 11th May 2011

Seri is in theatre now as she has 3 twists in her bowel. Please say a prayer for her.

Update 10th May 2011

Seraphina is very poorly and on the list for emergency bowel surgery tomorrow.

Update 9th April 2011

I just want to say thank you to everyone who has been supporting Seraphina as we go through this bad patch in and out of hospital. The cards and bath ducks have really cheered her up even on the most poorly days.

We are at the Evelina children’s hospital next week in London. We’re just praying they have some good ideas about the next steps in treating Seraphina so that we can have her back to her lively bubbly self soon!

Update 10th January 2011

It has been a bit of an up and down month. Seraphina had her operation at the end of November (30th) and we had high hopes for the outcome, but unfortunately she had a lot of pain from the procedure which is unusual, and when the casts on her legs were changed she only had the new ones on for 48 hours before she was at the stage of needing Morphine for pain. We had to have the casts removed as her feet were swelling up and when they were removed we found that she had grade 3 pressure sores on the front of both ankles which were weeping and bleeding. We had to dress them and change the dressing every day which she found very sore. Then she unfortunately had an allergic reaction to one of the dressings which meant that she had hives all over the front of her ankle too which still haven’t quite gone. The operation was not successful and so unfortunately she is booked for another surgery (which they said should be this month) to cut through her Achilles tendons and also open up the back of each calf and cut through the muscles there. She will then be in plaster for 4-6 weeks. We are praying that this goes well and we don’t get any more pressure sores.

On the positive side, we all managed to spent Christmas together which was wonderful considering last year was spent in ICU. Seraphina even got the hang of using her hands to unwrap her Post Pals presents!!! We thought she would get a bit overwhelmed and so only gave her a couple to begin with, but she started screaming and when we asked her what was wrong she took my hand and pointed it in the direction of her Post Pals presents… so I said ”do you want more?” and she clapped! Clearly she was getting the hang of presents VERY quickly this year!

Thank you to the children’s Elves for making this Christmas extra special, particularly the person who bought Lyida’s Jacqueline Wilson collection, Sam’s RAF Elf (who according to Sam drives very fast planes!) for the Where’s Wally? books and slinky, Becs who made Aimee’s Christmas with all the card making gear and Seraphina’s posties/elves for the littlest pet shop toys, Peppa pig book, bath ducks etc etc, not forgetting the lovely woolly socks from Finland! Also a big thank you to MY elf for the lovely chocolate truffles! Definitely made my Christmas!

All thoughts and prayers would be appreciated for Seraphina’s upcoming surgery and also that she manages to get rid of the bad chest she has had for about 6 weeks now which makes sleeping difficult due to coughing/needing suction.

Update 25th November 2010

Seraphina has had a better month health wise and now we are trying to keep her fit for her surgery up in Sheffield on the 30th November.

We went to the Rett syndrome conference last Saturday with Seraphina. It was good to meet other children with Retts and learn more about Seraphina’s condition. Seraphina was parked in her wheelchair next to a large Christmas tree at one point and discovered a fascination with large shiny baubles which she was trying to kick into her wheelchair with her feet!! Both she and the few people that saw her thought it was very funny!

Her sister, Lydia, had her brain scan yesterday (24th) so we just have to wait for the results now. She has been very much cheered up by the couple of cards she had so thank you very much for those.

Thank you to Meri M from Slovenia for Seraphina’s story book, the people who have sent birthday cards ready for November 27th, and the children from the Army base in Riteln, Germany, for their hand made booklet with Peppa pig picture on.

Update 8th November 2010

Unfortunately we are going through a bit of a tough patch at the moment. Seraphina seems to be getting one bug after another and is getting really run down. She has caught another bug over the weekend and is very chesty and miserable and requiring a lot of suction.

We did make it to Sheffield – she had her chest drain attached and we saw the Orthopaedics consultant – the reason for the pain in her hip for the last few months is that it is partially dislocated! Her muscles and tendons in her legs are now extremely tight which is also causing her pain and so she is booked in for surgery and serial casting on her legs for 8 weeks. We should get the appointment through in a couple of days but he said it will be for sometime this month, so it looks like she will be in plaster for her birthday.

The other news we have is Lydia (who already has scoliosis and Syringomyelia) which causes a lot of pain, has to have a brain scan on the 24th November as her legs are also causing more problems and we finally got to see a neurologist who believes she has Cerebral Palsy!! This was quite a shock and Lydia is a bit tearful about it at the moment.

There are a few other heath issues going on with Seraphina too and to be honest we are struggling a bit so your thoughts and prayers would be appreciated.

Update 3rd October 2010

This month has ended better than it started. The first part of the month Seraphina had to be taken to hospital as she had seizures that wouldn’t stop and so had to be given a drug to stop them.

Unfortunately, she had a urine infection which triggered them off and while she was fitting she aspirated and so needed antibiotics to protect her from a chest infection. Her oxygen requirement doubled at this time which was quite scary for both of us. She also developed a different kind of seizure to add to her repertoire and had some sort of collapse and we are still waiting to see what the Consultant thinks may have caused it. She had only just got over the seizure episode when she needed to be checked over again, as she came down with a horrible tummy/fluey bug which meant that she couldn’t be tube fed her normal milk, but had to have dioralyte for a while and was really quite poorly with it. Thankfully she has all but got over it now but it has really knocked her health-wise so she is a little weak and wobbly at the moment. We are hoping that next month is a bit better health-wise for her.

Thoughts and prayers are appreciated for 21st October when she goes to see the neurologist and on the 25th when we are in a different children’s hospital for her to have a permanent chest drain valve fitted which hopefully should help with gas build up. Seraphina gets very very scared and upset about going to hospital now so all prayers are appreciated.

I am just in awe of Post Pals. The difference it has made to Seraphina (and me) is immeasurable. It is so lovely to see her little face light up when she sees an envelope, she is really getting the idea of this now and can’t wait for me to open the post for her. It was also lovely for Samuel to get a present as it is all too easy for siblings to feel a little left out at times when caring for a child with such complex needs, so thank you for making his day.

Thanks to Lilli, Isabella and Elouise for the lovely postcards from Hong Kong and also to Jane Fawcett for the postcard, what fantastic pictures of your cats! Thanks to Percy for telling us about his wonderful adventures and also to Sarah G for her wonderful letters that all the children look forward to me reading out! I’m afraid Seraphina did laugh quite a lot at you getting all wet and muddy though, especially when we kept repeating the word ‘splosh’ to her, she thought it was quite hilarious! A big thank you to Samantha for Samuel’s Helicopter craft kit, he loved it! And also a thank you to W. Krul for sending Seraphina the gorgeous yellow butterfly toy which she has become quite attached to!

Story written 2010

Poppy is a loving, smiling, happy little girl. She was born at 28 weeks and from birth she had inflammation of her bowel and started treatment for it at 3 months old. She was initially ng tube fed, then nj tube fed by 6 months, and her first operation was at 9 months old when she weighed just 8lb.

Over time, more and more things became apparent with Poppy. She had pseudo obstruction from 7 months old, hypoglycaemia caused by a rare condition called growth hormone resistance, and poppy has delayed gross motor skills and couldn’t sit until 18 months and didn’t walk until 2 and half years old. She used a walking frame and has special boots and orthotics. She also has Ehlers-Danlos Syndrome too.

Poppy has been tpn dependant since January 2010 and has suffered many line sepsis since November 2009, with 4 bouts of pneumonia, cellulitis, and with multiple bugs in her blood stream at one time. Her inflammation has got much worse along with the pseudo, and on many occasions we have nearly lost Poppy as she has been so ill. Somehow her little body fought hard and she is still battling on and always with a smile!

Poppy’s intestines are really struggling this past year and even though she’s on TPN she’s still not gaining weight or growing. She has a MRI booked for the 26th July 2010 of her bowel. In May she was put forward for small bowel transplant, but she is not a candidate as yet, so her battle continues and we can carry on giving her the best life we can when we’re not in hospital.

Update 30th March 2015

Well, what a year we have had. As you know, Poppy got her transplant call in September and she had a really rocky time. What with her abdomen being open and huge infection problems, gvhd and rejection, collapsed lungs and every complication possible, it was very tough.

However, Poppy’s finally turning that corner. She’s still needing iv fluid at night… but she’s off tpn and she is able to eat if she likes, but she gets her calories via her ng tube. Poppy’s open abdomen wound is getting there and we are hoping it will close within the next month. She’s almost 7 months post transplant so it’s been a long road for her with her wound and it’s been pretty difficult at times, so it will be amazing for her once healed. We also found the day of transplant that Poppy’s genetics came back as a defect gene, so we at least have some answers.

At the moment Poppy has a ileostomy stoma and a colostomy stoma too. In May, Poppy will have more surgery to close her ileostomy and her new colostomy bag will finally be in use. Our team are hoping that by doing this now Poppy’s colon will be less inflamed and cause less issues for her – it’s a right pain at the moment for her! They may revise her scar as it’s huge and possibly close her stomach muscles too… or this maybe done with the next surgery when they close the colostomy and reconnect her new colon. So there is a lot more surgery planned for poor Pops but she’s a little star and I’m sure she will bounce back!

Next month Poppy is seeing the cochlear implant team, as last year she became severe/profoundly deaf. It’s been really difficult all round and we are learning sign language, but she’s been assessed at Great Ormond Street for cochlear implant surgery, so possibly more surgery on the cards.

Poppy’s rejoined her class in school after nearly 3 years out of school, it’s just a few hours but it’s enough for her right now. She hates going but once there she seems happy.

Lots has changed for Poppy but mostly for the good. It was really tough in the years and months before transplant, and we honestly never thought she would make it through. Transplant has been a real journey, and by no means a cure, but whatever time we get we will live to the max… enjoying and making memories as much as possible.

I feel now is the right time to move the girls on from Post Pals. It’s been lovely and you guys are amazing, but I feel lots of children are more deserving right now. I’m sure in the future when Poppy needs re transplant we will be back as they only give you 3 or 4 years maximum with these organs, but for now we are doing well.

Thank you so much for all your help, post and smiles over the years. It’s been amazing and has made long stays in hospital so much more bearable for the girls, as you never forget Coral either. Thank you to everyone who has sent us post over the years, it really has been appreciated and helped us so much.

You can keep up to date with us on Poppy’s Facebook if you like ‘Poppy our fighter’. We intend to have lots of fun to share on there!

I have one more ask of you all… please think about organ donation, sign up, discuss it. Poppy is more than proof it’s worth it… if you have followed Poppy you will know her journey to here. Organ donation saves lives.

Update 11th November 2014

Pops is doing amazing! This super princess has definitely cracked it this time… go Pops! It’s about time… we are in our 10th week on picu/hdu. Maybe this week we might make the ward if we can get her bp more stable! Blood pressure is still being a pain, so she is still hooked up to infusion. The obstruction keeps causing pain but hopefully they’ll have a look with a camera this week and make a plan. Lots of resistant bugs as usual too so back to full gowning up for anyone visiting our room. Arrrgghh pesky bugs!

She is looking much better though – such a difference in just a few days. She is eating skips and sipping juice which is amazing as she has never eaten in her life! Keep it up Pops!

It is amazing what organ donation can do! Always so grateful and thinking of our donor family xx

Update 7th November 2014

Poppy had her transplant on 5th September (5 organs). Shes had a rocky time and still hasn’t left itu/hdu in the whole 9 weeks. She’s had lots of problems with the same infection bugs from before transplant and they are now in her open wound so has had a lot of sepsis. She had a 2 week period where we didn’t know what was wrong, 2 solid weeks of a high temp which wouldn’t come down and her needing bipap. She also had an awful rash and after a skin biopsy it showed Poppy has GVHD. This is where her donor cells within the new organs were attacking her tissues/organs making her very unwell. She has responded well to treatment so far but until she comes off the treatment we won’t know if it will return as it hasn’t fully gone from her skin yet. Her open abdomen is getting a little better but she has had problems with it going necrotic due to an underlying condition of connective tissue meaning that she doesn’t heal well. Poor thing.

Poppy has taken all this in her stride and has coped so well, but she’s really missing home now. We all are. Coral is at home and we are over a 500 mile round trip for a visit so it’s really tough all round. Pops is a fighter so we will get there… just got to keep the hope.

Update 14th September 2014

Day 8! Pops is finally off the oxygen!! Just need everything else to improve! Come on Pops!

Update 12th September 2014

Pops is the same really, no change. Blood pressure is still being a nightmare. Added in yet another infusion (9 pumps running!) so still in HDU and will be for a while yet. No feed this week now as the gut is not coping yet and the pain is still bad from her open abdomen, bless here She’s a little star!!

Update 10th September 2014

Pops is in HDU now. Her blood pressure will keep us here a long time as she’s on lots of drugs/infusions for it and it’s still not good. We knew this would be an issue as it’s one of her biggest problems. GOSH are helping with advice. Her pain is really bad due to the open abdomen, bless her. The pain team are amazing as always and trying their best. The biggest most amazing thing ever is we are running 5mls per hour dioralyte into her new bowel, bypassing the new stomach…WOW!! Keep praying as it is just day by day… hour by hour… she’s a little star!!

Update 8th September 2014

Pops is off the ventilator, on oxygen and still in ITU. Her blood pressure is still an issue and hard to manage but they are chucking everything at it, she always has issues with it so we expected this. She’s doing well and stable… all the expected problems but she’s fighting. The pain is awful for her as she’s still open and will be for a few weeks. Such a brave girl.

Update 6th September 2014

Pops is out of surgery. She had some complications but she’s doing ok. Now her journey of recovery starts so please keep praying. The surgery was just 8 and a half hours! I love our surgeons, they looked after my baby. Sadly they couldn’t close her abdomen though so she will still need more surgery in a few weeks.

Update 5th September 2014

Poppy got her call at 6am. Two ambulances and a helicopter later we arrived. It’s been a long hard day. Poppy is in theatre now (9pm) and it is the start of her new life.

Thinking of our donor family tonight with so much love for the life they’ve given. My baby is so brave… please keep praying.

Update 9th August 2014

I’m so sorry I’ve not update for a long while. Poppy has been in and out of ITU and ventilated a few times too this year, the poor girl is having a rough time.

Her transplant listing has now changed and sadly includes a liver too, so she is now on the list for 5 organs (full multivisceral-liver, small bowel, large bowel, stomach and pancreas). She has been 10 months active on the transplant list now!

She is still having ongoing infections and pancreatitis pain, so is on a lot of morphine and a huge dose for her patch. Since the increase she is definitely much more settled and happier but is still having a lot of pain.

Sadly, poor Pops has lost her hearing and is now profoundly deaf. She now wears hearing aids on both ears and this has affected her (and us as a family) hugely. Her behaviour can be difficult along with not being able to communicate well. It has been tough all round as it was very sudden but for poor Pops is must be so hard. She was very withdrawn but seems to be getting used to it now and we now need to learn to sign too.

Life is still pretty much on hold until she gets her call and a chance at life. She’s not been to school since the beginning of reception class (she would be Year 3 this September) and it’s so sad she’s missing out on all the primary years.

She’s still crazy as ever though and has acquired a ‘Disney channel’ attitude to boot, bless her. It’s amusing when she’s so teeny… you forget she’s 8 this year!

Poppy and Coral are loving the loom band craze… It keeps them busy, though it’s mainly Coral! Coral is doing fantastic in school and has done amazing with her reading and is way above her age, she’s a star! Poppy still enjoys her colouring in and anything pink!

Update 4th December 2013

Wow it has been a long time since we updated. Poppy is listed for a small bowel and pancreas transplant and we have spent nearly all year in hospital. Things just got worse and everything we have tried just made things worse. We really tried to get her gut feeding but she just can’t, bless her. She’s had 5 picu stays this past year where shes literally fought to stay with us. One of her worst was the encephalitis through which she sustained a brain injury with damage to a large area. She really did amazing and way better than her picu doctors thought she would, but it has left her with a left sided weakness, seizures, obsessive behaviour and needing splints on both legs, but she’s still a star! The ongoing pancreatitis is awful for her as she’s in a lot of pain which we are trying to control with a morphine patch plus added morphine and it does get her down at times. She gets very fed up but Pops being Pops, she is still as crazy as ever and still laughs like mad at silly things!

Coral has had a tough year and big changes for her due to Pops care being so much at home now with lots of iv drugs all day. She has so little time with me and we don’t get out or do fun stuff anymore, so she’s missing out a lot. However, she is doing brilliantly at school and is so helpful at home – I couldn’t manage without my little sidekick!

We just pray Pops gets her transplant call soon and she gets the princess life she deserves. I feel 2014 has to be better.

Thank you to everyone who sends post to both girls, it means a lot and cheers Pops up lots. We love our Post Pals family! Thank you Bev Higgins for the advents, what a fantastic idea! Poppy loves it, she can’t eat or drink so this cheers her up loads!

Update 21st September 2013

Poppy is awake and off the vent and most importantly is still herself. The neuro team are astounded by how bad her MRI is and how well she has pulled through!! What a star Pops is!!!! Literally improving by the hour, managing to do more and more things, as her brain creates new pathways. Go pops!!!!! Can honestly say we really truly are so lucky, she had amazing treatment in picu which all helped her and we are so so greatful and lucky to still have our girl.

Update 16th September 2013

Poppy has had an up and down time and after a stay at Kings it has been decided that Poppy will be listed for transplant. They were waiting for test results to decide which organs she needs in addition to a new bowel.

However, this week, Poppy took a turn for the worse yet again and was admitted to Manchester PICU and placed on a ventilator, as amongst other things she is having uncontrolled seizures.

Today came the very bad news that Poppy has a large area of her brain that is swollen and damaged, both from birth and now from this. The doctors need to keep her resting in PICU to let the swelling reduce before they can wake her to see how the damage has affected her. All we can do is hope and pray that Pops is still Pops when she wakes up and that we can control these seizures.

Update 30th July 2013

Poppy has lost at least 6 litres of fluid and is looking much more like her normal self. She is now breathing by herself (but on O2) and back on the main ward. Today she said a couple of words for the first time, this latest PICU stay has taken its toll on her.

Update 27th July 2013

Pops had a stable night, she has a high temperature again though and her liver is very big and her liver bloods are not good. The frusimide infusion and restricted fluids (1.4mls an hour of tpn!!) have helped as she has lost a lot of the fluid she had on her. She is amazing, bless her.

Update 26th July 2013

Last night Poppy was flown down to Great Ormond Street and spent the night in theatre.

Update 25th July 2013

Poppy has been moved to ICU in Manchester to be ventilated as she is really not well, needs a chest drain put into her chest to drain her right lung, and the heart stents caused a superior vena cava obstruction as well as infection, causing her head to be hugely swollen. She is struggling bless her and is just so poorly.

Update 7th February 2013

Poppy has been admitted to GOSH and will be having surgery to remove her colon. We are hoping she might be able to be discharged by the summer but it will be a long stay away from home and Coral.

Update 27th October 2012

It has been a long time since i have updated and a lot has changed, but sadly not for the better.

In the last 6 months Poppy has deteriorated a lot. Not only is she tpn dependent but she is now dependent on IV fluids day and night too, meaning she is connected intravenously 24 hours a day. She’s pretty fed up with it all. She got a line infection after a bowel procedure in April and things have just gone from bad to worse.

She has had horrendous pain and she’s now on a range of pain medicines including nerve meds, morphine and codeine. She had to have emergency  surgery in Manchester children’s hospital in August due to a prolapsing bowel which ended up with her being in HDU. She then got septic and had to have her hickman line (which she gets her nutrition and her fluids through etc) removed due to the infection and how sick she was. She went to theatre and had a central line put in, but due to poor access she ended up with a line in her foot, which was very uncomfortable due to the vein being very inflamed.

Her bowel in the last 6 months has massively deteriorated and was so dilated and distended she was unable to sit, and was needing oxygen at times due to the pressure it was putting on her lungs and diaphragm. She couldn’t even sit up, and tests showed her small bowel had deteriorated and wasn’t working and flowing backwards into her stomach. So, she had more bowel surgery to form a ileostomy (this is a stoma) to help relieve the pressure.

This operation went a little wrong, meaning a day later she had to go back to theatre again to be reopened and have the stoma moved. They also had to sort out a mass of adhesions. Poor girl, by now she’d had enough and ended up in HDU in GOSH this time. Once again, she was septic after surgery and ended up needing oxygen and was poorly and I was living on a knifes edge not knowing what was next. It had been an awful few months previous to the surgeries, she had barely been to school since April, and when she did she needed morphine administered in school to help her pain.

She arrived home from GOSH on September 3rd, just in time for me to take Coral for her first day of school. Poor little Coral, she had been shuffled from pillow to post all summer.

Poppy still wasn’t at all right, and was still on iv antibiotics and iv antifungals – then a week after these finished she took a turn again. She was so poorly this time she ended up in PICU in Alderhay hospital. It was a very stressful time and brought back many memories for me losing my son Oliver in the same way. Lately, all her organs are under a great strain, so she’s retaining fluid massively, she has very high blood pressure despite meds, her heart rates racing all the time, her nervous system has become affected and she has shakes\tremors, she’s so swollen and puffy due to the fluid shifts, and this infection just overwhelmed her very quickly and she went in to septic shock very quickly. Its always a TPN mums biggest fear and we were living it. Luckily, Pops is a fighter and she came through, she had amazing care and we owe our local consultant her life for getting her onto isotropes and ventilated and transfered so quickly.

Since her bowel and general deterioration means she now can’t attend school, she’s pretty fed up. She’s been crying a lot and is very sad about things. Being connected to ivs 24 hours a day means no more swimming, which she loves to do, and in general we don’t really do much as a family anymore. She tires very easy and generally just feels unwell.

The plan for now is that she has been referred to Birmingham children’s hospital for bowel transplant assessment. We really don’t know how we feel about it, but the negativity about where we are at right now from everyone makes us feel like we have no where else to go. It is just very scary. We are currently waiting to hear if they are going to remove her colon too, as this is a great source of pain. She’s needing lot of pain relief and is having to be on so many strong immuno suppressions etc, to try to help her inflammation, plus she now has enemas which she hates. I just really feel for Pops in all this.

On a good note, Coral is really enjoying school, and is doing very well and is very bright – yay, go Coral!! Poppy is to start home tutoring after half term, so that will keep her busy, and hopefully it will be fun learning too. She’s getting very good on the laptop and is enjoying cbeebies, and now is a huge fan of moshi monsters – she tries to play online but it is quite hard, so i have to help and read it to her – she has a pink moshi online… always pink, still. We have a new amazing OT who has got her a new big comfy armchair for home which reclines and she spends most of her day in this and loves it. I would love one too! It reclines and is amazing! We have tried her in a fab new wheelchair too, which we find out on the 7th November if we get the funding for it. We really hope so as Poppy’s really looking forward to having a chair the same as her beloved Post Pal ‘Dominic B’… so watch this space!

Thank you to everyone who sends post and just thinks of us at our tough times. Post Pals is always a godsend when Poppy’s poorly and stuck in hospital and is for Coral too. To know people remember her too is great as siblings are often forgotten. Particular thank you to Emma (Isle of Man) and Nathalia. Thank you for the personalised stickers too as both girls loved them!

Update 8th June 2011

Poppy’s doing ok on this new Ivig treatment, she seems to have a little more energy, and has been off iv antibiotics now since the end of March when she had aseptic meningitis and pseudomonas line sepsis.

She’s been having lots of problems with her left ankle, it’s very stiff and painful, especially in the mornings, so she’s just got to exercise through it while we wait for X-ray and scan results, and wait for a podiatry/orthotic appointment as the left leg isn’t growing and is much shorter than the right.

Poppy starts big school in September and she got the school we wanted for her and they have been fab.

Thank you to everyone who sent Poppy and Coral Easter craft sets, they had great fun making things. They loved the tiny little pram and dolly that Libby sent coral too, she plays with it every day.

Post Pals is just fab, the girls love the postman now.

Update 15th April 2011

Poppy is in hospital as she turned blue/grey tonight.

Update 28th March 2011

February was not a bad month in all. Poppy had two chest infections needing iv antibiotics, but luckily we can do them at home. She was having masses of pain from her bowel so is now on new meds and they seem to be doing something but not fully working yet. Poppy had her educational psychologist assessment ready for school to see what help she’ll need for school in September.

We had a lovely weekend away just local to us in our caravan, but the weather was terrible and Coral fell face first in the mud. Poppy found this very amusing, bless her!

The great news is that Poppy has finally got funding for her IVIG treatment. GOSH are paying on a trial basis. We are very hopeful that this will help her immensely in the long run, and even a possibility it may help enough to get back onto tube feeds. Keep everything crossed please!

Thank you for Poppy’s letters from Rachel and Adam, Mandie and Rosie, Emma, Sarah G, and lots more. Poppy loved her build a bear outfit too, very cute! Thank you.

As usual, you guys do a fab job and always manage to bring a smile on the most hardest of days. It means the earth, thank you.

Update 18th March 2011

Poppy was in GOSH for an overnight TPN MOT on Monday and started her new treatment. Unfortunately she reacted to it and had aseptic meningitis and a bacterial sepsis. She’s on IV antibiotics and hopefully going home later this evening – as we do all her care we can manage her at home. Fingers crossed this treatment helps things but we are a bit worried about the next dose, although she will be pre-medicated this time.

Update 18th February 2011

Well it’s been an up and down winter for Poppy this year. She has pretty much been on IV antibiotics the whole winter. In December she was very unwell and they were talking about PICU, but miraculously, with a lot of iv’s and blood transfusion she picked up. She was in a lot of pain and needed morphine, her mouth was full of ulcers and very sore, and it was so upsetting. New Year she had flu, so it was more ivs, oxygen etc, and home on ivs. Her gut in that time was terrible causing proctitus flares. The winter has been bad due to her bloods not being good, her bone marrow very suppressed and neutropenia, meaning for 8 weeks we were housebound, even over Christmas.

Back in October, her immunologist at Great Ormond Street told us of a treatment that really could improve her life – intravenous immunoglobulin therapy – and she was applying for funding from the local PCT. We were excited at the prospect that within 6 months of being on it Poppy could come off tpn and back to jejunal tube feeds!! Amazing! However, the local PCT turned her funding down, unfairly. To cut a long story short, appeal process started, emails to MP’s flew back and forth etc and by now GOSH were realising we were not going to give up. On Valentines Day we got the call to say that GOSH were going to fund it. Yipppeee!! We’re very happy and hopeful that this will make a difference to her so keep your fingers crossed! 🙂

At the moment Pops is ok, no infections and no ivs. Her gut is up and down and we’re trying to combat dehydration at the moment but she’s not happy about being connected to either or another machine all day.

Sorry for the slow update but we’ve moved house and had no Internet!

Thank you to Sarah Marshall for the lovely elf box for Coral – she loved all the princess things, especially the dolly and she shared her box with Poppy too. Thank you Post Pals for the girls’ balloons! Poppy’s going to have her deflated Minnie mounted on her wall. Thank you Jenny for the stickers. The smile box from Germany was fab and they shared it all! Viks and Kate, thank you for the tea set as the girls love crafting and they play with the tea set all the time! I’m hoping I’ve not missed anyone but the internet has been off and I’m trying to catch up!

Post Pals is amazing and a whole new world for Poppy. Life for her can be strange living in Coral’s shoes, as in it is Coral’s nursery and Coral’s friends, Coral can eat and drink etc, but when she gets post sent to her from what she says are her friends, it really does light up her face with a smile. Thank you!

Update 16th November 2010

Poppy’s blood works are not good at the moment, her bone marrow is very suppressed, her liver is struggling at the moment, and she’s anaemic so it is making her feel up and down and very tired. They’ve stopped her immunosupression for a week and then they’ll reduce the dose to see if this helps, but it will possibly have an adverse effect on her gut. She’s not allowed out at the moment or to nursery etc, as infection risk is very high. We’re going to Disneyland Paris on the 23rd of this month, but we need Poppy well to be able to go. Her bloods need to be better or we won’t be going, but she’s still smiling, bless her.

Thank you Alison for the Halloween gifts and they also loved the flannels! Thanks to Post Pals for the Halloween bag too.

Update 27th October 2010

Poppy has been up and down recently. She’s home which is fab and with home TPN we are having much more time at home now. We’re still having lots of problems with bacterial overgrowth and diarrhoea and pain , she’s just finished yet another course of antibiotics. She has seen her immunologist at GOSH and they want her to try immunoglobulin therapy IV (IVIG). They’re hoping this will help her immune system and her inflammatory problem. It’s a 5 hour infusion every 3 weeks at GOSH and after 3 tries we can do this at home as we’re IV trained. So fingers crossed!!

We’ve had a lot of change of medication lately to try and help her gut, but not much change yet. Poppy is happy though and is now in nursery and enjoying it a lot! She’s also doing gymnastics too as it all helps with her physio programme; she finds it very tough and is exhausted after but is enjoying it.

We are going on holiday to Disneyland Paris in just 4 weeks time. As you know, Poppy is a massive Minnie Mouse fan, so she is extremely excited!

Thank you so much to Viks and Kate and all the Post Pals gang for running Post Pals. Poppy loves it! Thank you for Rosie and Mandy for Poppy’s gifts; I’m subjected to Mickey Mouse DVD all day now! Thank you to everyone who sends Pops cards and pictures and thanks Emma Stone for the pictures of badger. Thanks also to Dottie the Dalmatian – Poppy loves your adventure post! Thank you so much for Poppy’s DVD player as well, it is literally a life saver. She is in bed by 5pm most days exhausted and loves to watch her DVDs.

Update 13th August 2010

Poppy is currently in our local hospital in Blackpool with a line sepsis. Consultants are all very worried as her immune system is very poor at the moment and she’s not responding as she should. Her body’s not responding outwardly with the infection which is worse, so we’re hoping these new antibiotics kick in and that she improves.

Thank you all so much for your post as it really does cheer her up!

Update 29th June 2010

Poppy is home at last after 7 months in GOSH on TPN. She’s doing ok at home, but still having a lot of pain, her bowels are not good, and she is still losing weight despite being on TPN. She is pretty worn out, bless her, but very happy to be home. The bowel MRI is on 26th July at GOSH.

Thank you for Poppy’s cards this month. Viks sent a lovely hand made one, Emma Stone, lovely cards from the USA too. Poppy and Coral are very lucky girls! Also, thank you so much Post Pals as the girls had a huge parcel and loved their chair! They coloured the bean bag dogs in straight away too. Granny Ruth sent Poppy a Charlie and Lola magazine which she loves, she’s really into her magazines and books! Thank you to Louise for the Peppa Pig bags, Poppy now carries her feed pump in her one! Thank you to Alison L, she’s great! Thanks to Steph, Poppy loves her pink poodle. To everyone else who has sent post, thank you!

Post Pals is brill and has brought a new life to Poppy! She’s not really got any friends because she’s too poorly for nursery and is always in hospital, but now she has lots of friends who send her post and it has really brought a huge smile to her face when the postman knocks! So thank you!

Update 15th June 2010

The girls got their Post Pals parcel today and it was very unexpected! Thank you! They were so excited, giggling like mad! Apparently it’s a magic chair, it walks! The wind blew it along in the garden and they were wetting themselves with laughter! Brill! Definitely a much needed smile as Pops has been in a lot of pain again today. Thank you!

Update 7th June 2010

Hey all! We are home! Poppy is all connected to the TPN too.

Thank you all so much for the post you’ve sent Poppy and Coral! They just love receiving it. We had just arrived home tonight after a long journey (screaming, tired, bored, sore etc) and Poppy was grumpy and in pain, but it soon livened her up to come home to post!! We’ve decided to keep a notebook of addresses starting from now on so Poppy can write back, as she’s in bed early now at home because of the TPN and it’ll give her something to do. She’s had so much post it is hard to keep up!! Loads of love and thanks! You’re amazing people!

Update 21st May 2010

Well Pops is definitely on the mend; our doctor just said she’s a very lucky little girl to pull through. She was very very sick – 10 days she was fighting it and she’s very worn out. I feel so relived an grateful she’s still here! Nothing will stop me smiling! Now it’s just a long recovery.

Update 20th May 2010

Yet another bad night. PICU doctors wanted to do a CT scan over night as her head is swollen and morphine’s not touching the pain in her head and she can’t move. They reduced all her fluids because she’s so swollen, bless her. Just waiting for doctors now to see what’s next. MRI and echo and possibly CT scan needs doing. Poor little thing. We’re waiting on big news today for her. I will update when I know anything. I’m so tired it’s unbelievable! Little improvement today, but don’t want to count my chickens as when ever we have a sigh of relief that maybe she’s turning a corner, it goes wrong again.

Story written 2011

We knew at the 24 week scan that Phoebe would be born with Chronic Renal Failure. Phoebe was induced one week early as there was no amniotic fluid and the first few hours were critical. Phoebe had a peritoneal dialysis catheter put in when she was 24 hours old and she has been on dialysis ever since. Phoebe spent nine weeks in the neo-natal unit before coming home.

In September 2008 Phoebe had her gastrostomy button put in so her NG tube could come out. Phoebe is fluid restricted due to no urine output and is fed special feed through her button. She does have some pureed food orally and likes licking and tasting.

In March 2009 Phoebe lost her sight due to pressure on the brain. She had a VP shunt put in due to hydrocephalus and was registered blind. She currently wears glasses to strengthen what sight is left.In April 2009 Phoebe got peritonitis and her peritoneal dialysis catheter had to be removed. She is now on heamo-dialysis and has two tubes in her chest, which run into her heart. Phoebe has dialysis on Mondays, Wednesdays and Fridays for three hours a time.

Phoebe’s Dad, Lee, is a good kidney match for her and we are awaiting results from various tests to see if a kidney transplant can go ahead.

Phoebe has had 28 operations to date and a recent bladder test showed that her bladder is too small so we know more operations are to come. Phoebe has a brilliant character and is always smiling.

Update 20th May 2014

Phoebe is now 2 years post transplant and she is ‘moving on’ from Post Pals. I’d like to say a huge thank you to everyone who has sent Phoebe and Libby (and even us parents) post and parcels. Each and every one has made us smile at how kind and generous people all over the world are. THANK YOU x

Update 17th March 2014

Thank you to everyone who writes to the girls and thanks for their special Valentine cards too.

Update 1st February 2014

Phoebe’s birthday is coming up and she has some cards and parcels that I have put by until the day. Thank you to all who write to Phoebe and send post.

Update 27th September 2013

Phoebe is now 20 months post transplant and from a kidney point of view all is going very well. I cannot believe the 10th January 2014 will be 2 years.

Phoebe was recently admitted due to a tummy bug that caused her tummy to be damaged and needed time to get better, it is improving but it’s just knowing what kind of things to avoid (sweets and cakes are a massive NO at the moment). We are trying hard to get phoebe drinking as she relies a lot on her button (gastro button) but she is not having any of it. She’s very stubborn not to drink.

We often get asked about our pets. We have a dog called Sandy who is very old, a cat called Toby who is 6 years old, a rabbit called Caramel who is 3 years old and we also have 2 fish.

Phoebes next lot of surgery will now be after Christmas as we are going on our summer holiday in October due to cancelling it from August after Phoebe was admitted. We all so need this holiday and are hoping we can get to go.

We would all like to say a massive thank you too all that send us all post and parcels.

Update 28th May 2013

Phoebe and Libby have a beautiful new baby sister, Trinity-Leigh, born on the 5th of May.

Phoebe is waiting for a date to go in for an operation to plumb her kidney to her bladder at last, but there are complications and risks that could jeopardize her transplanted kidney. This is due to happen around July.

Update 20th November 2012

Since Phoebe’s transplant from her dad, she has been doing much better – it has been 10 months now and she is eating properly and has LOTS of energy. We have to maintain her fluid to make sure she gets enough so she still has a gastrostomy button in, to which we are able to give her water boluses. She is trying very hard to drink this herself but it is a lot for her to drink. The hospital do want the button out so our next step is making her drink and also toilet training. We have had a few problems with this as Phoebe has an urostomy, meaning her urine comes out of a little stoma like hole on her skin, and we have recently had help with and started using bags, as she was getting wet and school was unable to control her amount of nappy changes needed. Over night the bags have helped, but it’s hard to keep stuck to her skin, so it’s still trial and error, although it has helped take some pressure off. We are still in conversations with hospital about eventually plumbing her kidney to her bladder.

Phoebe attends hospital every 3 weeks for routine check ups which means she has not missed school. This is good as she loves going and has started learning braille and is actually very clever with it – she has picked it up really easily and is willing to learn – she has become a very bright little lady.

I would like to thank everyone for their smiles in the post, Phoebe and Libby love receiving their letters and gifts.

Update 25th March 2012

Phoebe is doing very well with her new kidney. She is having her haemo dialysis catheter removed on the 2nd April so will spend a night or two in hospital.

Thank you to everyone that has sent us post.

Update 12th February 2012

Phoebe is now 5 weeks post kidney transplant from her dad Lee and they are doing extremely well. Phoebe now has a urostomy which she now urinates from. It is free flow as Phoebe has no bladder function and it comes straight from the kidney, which means later on (approx in 1 year) they will transform it into a mitrofanoff. So we’re now half way there at making Phoebe’s life a lot better.

We attend the hospital 4 mornings a week at the moment so they can do observations and bloods to keep an eye on her levels; as if there were signs of rejection they could do something sooner rather then later. So far so good though, but we have been warned the first year is the hardest. We have had concerns with Phoebe’s breathing at night so have been referred to ENT for adenoids and tonsils to be removed to help her breathing.

We’ve had some wonderful post, especially for her birthday. Thank you everyone! Thank you to the girls at the high school for all their drawings too – a beautiful idea. It’s an amazing feeling when Phoebe opens her post – she loves all the surprises.

Update 9th February 2012

Phoebe’s kidney transplant has been a success and things are going smoothly. Her dad is in more pain whereas phoebe is thriving off the new kidney. She is in hospital daily for blood tests but all is doing very well.

Thank you all for your amazing post! I love how some cards are hand made and Phoebe always feels them or the stickers on them etc. We have had some really beautiful cards!

Update 12th January 2012

Phoebe had transplant on the 10th January! Her dad, Lee, donated his kidney (they say often it takes longer for the person donating to recover than the one receiving) and then it was transplanted into Phoebe. Lee and Phoebe were both back on the ward the same day – they were tired and sore, but Phoebe was WEEING!

Lee is going home today and Phoebe is going for a scan as her urine isn’t flowing well, but it is to be expected due to the swelling.

I’m sure Phoebe would appreciate some cheery post!

Update 9th January 2012

Phoebe is having her transplant this week with a kidney donated by her dad.

Update 5th October 2011

Phoebe has been in hospital with heart problems and was on 48 hours monitoring.

Thank you to a young girl called Lilly who sent Phoebe a beautiful touchy feely card as it was lovely. Phoebe loves receiving her post and it brings smiles while she has her treatment.

Update 29th June 2011

Phoebe has been doing relatively well. We had a blood pressure problem which seems to have resolved itself now. She recently had to have more work up for transplant injections too which she was very brave for.

We are looking forward to our first family holiday at the beginning of August. It’s just a weekend but it will be a first.

Phoebe has been granted a wish to Paultons Park to see Peppa Pig World on the 14th July and both she and Libby are excited about it.

Thank you to everyone who has sent the girls post.

Update 29th April 2011

We had a slight scare with a clot blocking Phoebe’s line on Monday but thankfully it became free.We have had a lovely Easter weekend and Phoebe and Libby have received some beautiful parcels, letters, and drawings. Thank you Viks for the wonderful Easter egg game too as it was great fun.

Story written 2011

Philip was diagnosed with Spinal Muscular Atrophy (type 2 severe) when he was 18 months old and was only given 4 months to live! Philip is unable to walk, crawl, sit unsupported or move himself from one position to another and cannot roll or lift his arms up. He wears a spinal brace all day every day. He has limited movement in his hands and cannot lift anything or reach beyond arms length. He has a very weak grip and cannot do any day to day things like brush his teeth, get dressed, eat or drink by himself. He needs help with everything he does and tires easily.

Philip is prone to chest infections. He is unable to cough and has very weak lungs and goes into hospital regularly with pneumonia throughout the year. During the cold and damp weather and through the whole winter Philip is confined to being indoors as the cold and damp air affects his lungs. At home he has a Nippy 3 ventilator that helps him to breathe. He may have to undergo surgery to put a rod along his spine in the near future.

Despite all this Philip is a very happy, patient and lovely little boy who amazes the doctors and specialists he sees with this strength and courage throughout.

Philip’s favourite things are playing in his wheelchair with his brothers and sister. He never complains about what he goes through and rarely does he moan about being unable to join in with ‘normal’ things that this friends are able to do.

Update 15th September 2018

Philip is now 18 and off to University so is moving on from Post Pals.

Update 25th February 2018

This past month Philip has been a bit chesty, but overall in good health. He has now received an offer from a university!! So it’s been all go trying to get all his care needs sorted for whilst at university. We are also trying to find him a new powered wheelchair. On top of that Philip is currently in respite for a couple of weeks due to an extension we are having done to our home. So we have an awful lot going on at the moment.

Thank you for everything that has been sent to them. Jacob had lots of cards for his birthday and he loved seeing them come in the post! They also have loved their parcels they’ve been sent!

Update 23rd August 2017

Thank you so much for all of Philips and Matthews birthday cards! We have had a very busy few months as Philip has been unwell. He has done some A-level exams and we have had to start with a new care agency! Fortunately we so far have been able to enjoy the summer.

Update 5th March 2017

Thank you so much for all the letters and a the large box they all received from the Disney store!! Philip has been unwell the last week or so with a nasty virus but is starting to feel so much better now! Especially after getting his new Nintendo switch

Update 15th February 2017

Philip has been doing ok. He has had a few chest infections but fortunately has stayed out of hospital! We had a nice relaxed Christmas spent at home with family visiting.

Update 4th November 2016

Philip has had a bad month with his chest and was admitted to hospital at the beginning of the month. He’s much better now though. Thank you so much for all the cards and gifts they’ve all received!! I’m so sorry I’ve not thanked everyone personally or on the Facebook page but they have all really appreciated everything they’ve been given.

Update 5th September 2016

Philip has been ok this month. He received his GCSE results where he got 1 A*, 5A’s and 2B’s. He also had his gastrostomy tube changed to a Mickey button. The operation went ok but he required a lot of help during the intubation and the anaesthetist said he has an extremely difficult airway!! They damaged his throat and vocal cords during the procedure and caused a chest infection too but he has been recovering well. We spent a week in the children’s hospice, which was most needed! And then we had an absolutely amazing time at Chessington World of Adventures arranged by Post Pals themselves. Philip does seem to be struggling with his chest a bit more now and we are due to see his specialists about it soon. On the good side he is just about to start sixth form in a new school. He’s a bit anxious about it though.

Thank you so much to everyone that has sent cards, letters and gifts to Philip, Matthew, Joanna and Jacob. We appreciate every one of them! It’s just been an extremely busy month so have not been able to say thank you to everyone.

Update 28th July 2016

Philip has finished his GCSEs now and we are anxiously awaiting his results in August! We recently got him a Labrador puppy which is going to be trained up as an assistance dog for him to help him have a bit of independence. He’s been really well these last couple of weeks and has actually managed to enjoy the sunshine!! Thank you so much for all his gifts and birthday cards he received!! He had a fantastic birthday.

Update 8th June 2016

Philip is really quite unwell at the moment and struggling to keep up with his GCSEs. He has so far been able to stay at home with oral antibiotics and constant chest Physio, suctioning and spending a lot longer on his bipap. The community nurses have been to see him and taken a sample so hopefully will get it sorted without a need for a hospital visit! Thank you to everyone that sends letters and parcels to Philip, Matthew, Joanna and Jacob. It really is special to them.

Update 4th May 2016

Philip has had an ok month. He has missed a couple of days of school due to hospital visits and illness, but is now back at school. He did his first GCSE yesterday and is getting quite tired from all the work and is feeling very stressed. We took him to the cinema on Friday to watch the new Captain America film which he loved and was a nice chilled out time for him. Thank you so much for all the gifts he has received this month. He loved the star wars card and stickers!

Update 6th April 2016

Philip is doing ok this month. Still battling the chest infections, but with the warmer weather he’s definitely improving! Really enjoying the Easter break and finally being able to go out as a family! We did our first family outing yesterday to a local zoo and it was so fantastic being able to just get outside together and get some fresh air for the whole day! Other than that he’s just been chilling out as much as he can as his GCSEs are nearly here, with his first exam beginning of May. Thank you so much for the books that have been sent to them all, they were all so excited and happy with them!!

Update 7th March 2016

Philip has not been so good this month, quite chesty and suffering from pains in his chest. He has also lost a lot of weight so we’re currently experimenting with new feeds.

Update 6th February 2016

Philip is generally doing really well. He’s currently revising for his GCSEs, and has only had to have a couple of days off school due to illness, which is fantastic! He absolutely loved his Star Wars pop vinyl he received, thank you so much! Jacob asks every day if there is post for him. It really makes all their days when then receive things, so we are extremely grateful to everyone that has sent letters and gifts!

Update 7th January 2016

Philip has had a really good month, and for the first time since I can remember he was extremely well over Christmas! He had a great Christmas, and because the weather has been quite mild in December he has actually been able to go out and enjoy some of the Christmas events going on locally for the first time ever! He absolutely loved going to the cinema to see the new Star Wars movie and has already seen it twice! We all want to thank you so very, very much for all the cards and gifts everyone so generously sent over the last month! We had great fun opening the presents on Christmas Eve! And they were all greatly appreciated! Happy new year to everyone, love Philip and Susan (Philip’s mum).

Update 2nd December 2015

Update 13th October 2015

The cold weather has started and so has the chestiness. Philip has already had a chest infection this month.

Update 26th September 2015

Philip has had a couple of chest infections recently and another one is currently brewing. The change to the cold and damp weather really affects him. We are also still waiting to hear about his hips!

He had a great month in August, though, and was able to go out to some places like the cinema and London Zoo! He also had a couple of weeks in the children’s hospice, which he loves going to, and that helped to refresh him.

Update 5th August 2015

Philip has had a good month! We are currently away at respite for some much needed rest now that the school holidays have started!

We’re still waiting to hear about his hip operation and have some hospital appointments coming up, so hopefully we will get some idea on when it may be.

Thank you to everyone for all Philip’s birthday cards in June, he received so many and loved them all! Thank you to everyone that has written to him as he does appreciate it all, but is sadly unable to write any replies himself.

Update 23rd July 2015

Philip had another hospital admission due to aspirating again, but after a week in hospital and a following week in respite at his hospice, he was able to complete 3 of his GCSEs!

Update 1st May 2015

Philip started suffering from some seriously bad pain in his hips and back again last month so he is unfortunately back on regular pain medication. We also think we’re going to have to speed up his hip surgery to sooner rather than later due to his pain. We were hoping he’d be able to get through his exams first but now we’re not so sure.

We managed our first holiday together in over two years! Things didn’t go to plan with Matthew, Philip’s brother, being rushed into hospital with suspected meningitis! However, it was just some strange virus instead. It was very unusual being in hospital with Matthew and not Philip! Philip’s eclectic wheelchair also had some bad problems with its battery and kept draining, so we were a bit limited in what we could do, but other than all that it was just nice being together as a family!

Philip entered a chess competition and has got through to the UK finals! It is being held in Reading in July!

Update 11th January 2015

Philip had a much better end to the year after such a bad year for him with his health. We have had a couple of appointments with the consultants in December concerning his hip operation and are just waiting for some respiratory results before they will set a date. We are really hoping to be able to take him on holiday before his operation as the consultants are quite concerned about his recovery and how long that may actually take. His last holiday or any time away was in May 2013. He is a bit more settled with his health at the moment and hopefully it will stay like that for a while.

Philip is now struggling more with his hands so is not able to enjoy Lego anymore like he used to. He tends to just watch a lot of dvds now but more teenage ones. He is crazy about anything Marvel! He is still able to play his ps4 as he has an adapted controller and has his iPad and now a touchscreen laptop. He really loves reading comics and computer magazines as they are light and easy for him to hold.

Thank you for all the Christmas cards we received and thank you so much for all the fantastic gifts that were sent to Philip, Matthew, Joanna and Jacob. They opened them on Christmas Eve and we are so overwhelmed by your generosity!

Update 1st December 2014

Philip has had a good month! He has had a couple of chest infections and one got quite serious but we was able to manage it at the children’s hospice rather than hospital.

He has been really struggling with his food as he was allowed small tastes of food that is the right consistency, but even that now has been making him aspirate so we are waiting to speak to speech and language about what to do about that. He has his peg now so is tube fed anyway, but it’s just that Philip still likes the options to be able to eat.

He saw a hip surgeon last month too who wants Philip to have another operation – this time to replace both his hips, so at the moment he is undergoing some tests to see if he can safely have the operation.

Other than this Philip is definitely starting to be like his old self again (a nurse at the hospice said he was getting his mojo back at last).

Thank you for all the cards received so far, they are going up on Philip’s bedroom wall. Thank you for the horrible history games Matthew and Joanna received, we had great fun playing them as a family!

The children really appreciate being a part of Post Pals, thank you so much for everyone’s time and effort and to everyone who has sent them things!

Update 9th August 2014

Philip has had a really tough year this year. He got pneumonia, RSV and influenza H over Christmas and New Year requiring him to spend 6 weeks in hospital on an invasive ventilator. Due to this he has now lost his ability to swallow and so is tube fed. He is very upset about this and has lots of times when he is very miserable. He has unfortunately started to notice he is deteriorating, he has very little movement in his hands now and is awaiting a specialist controller so he can continue to play his video games on his playstation. He still really enjoys watching films though.

He now requires night time ventilation with a humidifier every night plus nebulisers twice a day which is increased when chesty. He now also has to have his mouth/back of his throat suctioned a lot of the time and uses a cough assist machine twice a day to just clear anything that might be on his chest.

As we are coming out of the summer, Philip will be confined to being indoors and missing out on school again as the risk of him getting chesty is very high.

Philip is a typical teenager but is finding life a bit difficult at the moment and is having to accept that his friends are able to do things he cannot. He is missing out on things, as well as the added blow of now not being able to eat anything anymore.

Thank you so much for Philip’s Star Wars activity books and his Star Wars toys, he really loves them!

Update 3rd January 2013

Philip was admitted to ICU on New Years Eve suffering with pneumonia and a stomach bleed. He was in a lot of pain and really struggling on Bipap so was placed on a ventilator and moved to PICU in London. Yesterday they needed to increase the ventilation and today he has taken a turn for the worse with his right lung completely collapsing.

Update 26th November 2012

Philip is going downhill with his muscle strength and eating is not great after his stay in the hospital last month. He is waiting for an appointment for a video fluoroscopy to see what is going on and we’re going to take it from there.

Last week we saw his spinal surgeon who wants to operate on his spine as soon as he can so we’re looking at March time, but due to his chest being so weak and being on bipap etc, he wants to have a respiratory check done at hospital first, to see if he can actually survive an operation. We’re not really sure what they will do if that doesn’t go to well, as the doctor has said his back is quite bad now and crushing his lung, which is causing the recurrent chest infections he keeps getting, so he actually needs the operation. Philip is terrified and to be honest so am I. He just seems to be struggling so much with everything, even little hand movements that a couple of months ago he was able to do. On the bright side, he doesn’t let it get him down and is still smiling.

Update 10th June 2012

Philip was in hospital over Easter with pneumonia and a collapsed right lung.

He’s actually going through a rough time at the moment as he’s starting to realise how much he can not do and is getting frustrated, especially with equipment like his bi-pap, as he hates using things but knows he now needs to and this is starting to make him depressed. He is also not able to eat very much and on the 26th of this month we are going to London hospital to see his specialist to discuss his deteriorating and possible tube feeds, which Philip is VERY worried about!

Anyway, thank you soooooo much for all that you do and he does love getting his post!

Update 23rd May 2012

Philip has deteriorated quite a bit in what he can do since he joined Post Pals. His hands are so much weaker than they ever were so he is pretty much unable to lift anything now, including food. He pretty much spends his time playing on his iPod as its all touch sensitive and watching DVDs which he loves! He keeps getting chest infections which are a sign of him worsening and is now using his bipap ventilator at home every night and whenever he is struggling.

Thank you for everything and all the post the kids get as it really does make them smile!

Update 30th May 2011

Philip’s operation went well and he recovered a lot quicker than the doctors expected, so he was able to transfer to the hospice a lot sooner than expected too. He is very tired and struggling a bit but is doing really well. Thank you for all your kind messages!

Update 25th May 2011

Philip goes into hospital on Friday for his operation and I just wanted to say thank you for all the cards and teddy he received. I will let you know how it goes. I’m more worried about it than Philip!

Update 13th May 2011

Philip had a long day today at the hospital for his pre-op assessment but was REALLY pleased when he got home to find parcels waiting for him. I just want to say a HUGE thank you so much to everyone who has sent us post!!

Story written 2010

Nia was diagnosed on March 30th 2008 with Acute Lymphoblastic Leukaemia. After the initial month of treatment we found out that she had a very aggressive and rare type with Philadelphia positive chromosome. We were told the only chance of cure would be aggressive high dose chemo followed by a bone marrow transplant. Nia’s Mum, Corinna, was pregnant with Nia’s younger brother, Finn, at the time so there was the big hope that Finn may be a potential donor (there is a 25% chance of a sibling being a match). Unfortunately he was not a match and an unrelated 10/10 donor was found.

After a lot of ups and downs, and on the third attempt, Nia received her bone marrow transplant on December 5th 2008 and suffered lots of complications post transplant. She was allowed home on March 31st 2009 – nearly 1 year to the day after original diagnosis.

Nia had a good recovery post transplant and started full time school again in January 2010 – nearly 20 months after leaving school. She went straight back into her old class, having missed all of Year 4.

We then had the devastating news on April 30th 2010 – Nia relapsed and is now undergoing further intense chemo and has not been out of hospital since May 1st. Her biggest dream is to be home for her birthday on June 18th in 10 days time.

Nia was also born with a very rare heart condition called ALCAPA which was only found when she was 10 months old. She underwent 2 open heart surgeries in 2001 and 2002. Both illnesses are extremely rare (about 2-3 cases in the UK a year) and are not related – so a chance of a child having both is nil – she is truly unique and we hope she will make it through this extreme challenge as well.

Update 20th May 2014

Nia is moving on from Post Pals after 4 years of being with us. When Nia joined her cancer had relapsed and she was facing a very high risk transplant but now is in remission and chemo free! Thank you to everyone who made Nia and her brother smile.

Update 2nd December 2013

December is quite busy with hospital appointments for Nia. December 5th is actually her 5th anniversary from her bone marrow transplant which would have been a big celebration (if she had not relapsed) so it is a bit of a bittersweet day for us. I remember being scared 5 years ago, but also so full of hope for a cure and that this nightmare was behind us, but now having lived with cancer for so long I understand that we are lucky enough to stay in remission, but it will be hard to say if she is ever cured.

Nia would love to write back to some of the Post Pals that write to her that are around her age – please include an email address.

Update 28th September 2013

We are still waiting for Nia’s mole results. It is classified as an abnormal mole but is now sent off for a second opinion – like so many things in the cancer world, it is not straight forward and we don’t know yet if it is cancerous or not – so the waiting continues.

Nia started year 9 and Finn year 1. Finn loves reading and reads everything he can get hold of (so loves reading his cards, especially typed or nicely written ones) and Nia had a good start, but already missed last week due to a cold. Usually from now until March, with all the colds around, she suffers a lot and misses out on school and being in year 9 it is not easy. She has a pile if schoolwork she now needs to catch up on that she finds very daunting.

Update 9th September 2013

Nia and Finn had a nice summer break and Nia enjoyed her time at the Over the Wall camp this year immensely. It really helps her being away from home (and maybe her Mum as well since I always worry about her) and just trying out new things. Both kids also attended a swimming class, and Nia moved right up from level 2 to level 4. She was a fairly good swimmer when she was 7, but lost all of her confidence after not being allowed to go swimming for over 5 years… but she just loves being in the water. Finn is not so sure about it yet (I never took him swimming since I did not want to make Nia upset since she loved swimming so much) so he is really worried about getting his eyes wet (let alone trying to go under water) but I am sure he will get there as well.

The summer ended a bit on a worrying note since Nia had a biopsy done to check for skin cancer since she had a very suspicious looking mole in her arm pit (so away from the sun light) so we are currently waiting for the results. Since she had full body radiation as part of her transplant, secondary cancers are unfortunately quite high risk. So it never feels like we can just leave it all behind and stop worrying. She also had another biopsy done of her bone marrow and spinal fluid which we hope comes back clear of any traces of leukaemia. She is still on daily maintenance oral chemo that targets the Ph+ chromosone, and the current plan is to stop it by the end of the year – which would be great for her, but somehow it always felt like this may be the bit that keeps her in remission, so I am a little bit nervous about stopping it, but again, I am not the one that has to take it (and suffer the side effects). Unfortunately with rare cancers there is not much data that helps making decisions and often it is trial and error – and if it is your child, you do not want to have an error!

Update 12th April 2013

We had a wonderful family holiday going to Florida to “give kids the world” and it was truly a one in a lifetime experience. Unfortunately, Nia was not very well when we arrived, but I guess we are used to it now, and just took it easy, and enjoyed as much as we could without overdoing it (which is easily done being in Florida). But seeing both of my kids being so happy was truly priceless and this trip will be forever in our memory. So it was lovely that the project of the month was “keeping memories” and both kids put together a little scrap book of our trip (and I made 100 page photobook which I had printed – took me ages but well worth it). Both kids have been in hospital – I guess both of them don’t deal well with the cold weather and it is just about time that spring is coming.

March 30th marked 5 years since Nia’s original diagnosis. I remember back then when we were told her treatment may last up to 3 years I thought nobody can manage that… not knowing that our journey would be so much longer and still ongoing. Needless to say I am so proud of Nia and being able to handle all what life throws at her, but also Finn, who was born into the mid of it all and has been such a lovely and caring brother. Nia joined Post Pals after she relapsed in 2010 and we are so grateful for all the love and support we have been getting. Finn is just starting to read now, and he loves getting cards that are nicely written that he can read by himself – some of the ones he got he must have read now over 100 times, just being so proud that he can read. One of Nia’s highlights of the trip to Florida was to meet Sophie, a Post Pal that wrote her from Orlando and was volunteering at Give kids the world.

Both kids loved last months theme – making Memories – and Nia got a lovely scrap book with lots of stickers and Finn got one as well… so they were busy putting memories together from our last holiday. Nia is really into sugar craft these days too – we found a local sugar craft club and so far she’s been able to attend 3 times and loved it.

Update 1st December 2012

Both Nia and Finn are trying to settle into a school routine, but there are still a lot of interruptions due to ill health, and especially viruses going around school. In the first 3 months of school (Finn just started school in September) it has been only 1 day that both kids have been in school all day. Currently there is chicken pox going around in Finn’s class and I am afraid he may now be next. Chickenpox is such a “minor” illness for a healthy child, but can be life threatening with a child with no immunity – and Nia is quite neutropenic again these days, no real explanation why since she had not had any high dose chemo for a while (only “maintenance” chemo), but since she had so much treatment and all the chemo given on a transplanted marrow (so not really her own), her oncologist thinks her marrow is just tired. I’m not really sure what this means long term and if we face the risk of her marrow failing, but what I learnt is just to take one step each day, and if my kids are happy, that is good enough.

Post Pals, as ever, help an enormous amount – one day Nia was really down and got a fun present with some interlocking straws – entertained her for hours. I’m not sure who it was from, but it was so much fun. Finn is always excited about any mail, he got a lovely pillow that is his favourite bed time accessory at the moment.

Update 5th March 2012

Sorry I have not updated for a while… I know quite a few Post Pals follow Nia’s story on caringbridge and overall no news is good news. As always, Nia’s had a lot of up and downs, and winter is never a good season for her, but overall I guess she is as good as she can be. We are nearly approaching 4 years since her first diagnosis and sometimes it is good that you don’t know what is around the corner. I remember hearing that she may need 2 and a half years treatment if it turns out to be ALL, but mostly outpatient, and 6 months if it is AML, but mostly inpatient. And then 4 weeks in we found out she had the rare Ph+ chromosone ALL which then meant nearly 14 months inpatient, then a good year at home recovering, and then after relapse another 5 months mostly inpatient… and she is still in treatment. I would have thought we could never ever do it, but if you are in it, you just learn to go along with it all and cherish the times at home when things are as stable as they can be. This disease is just so tricky and just loves to interfere with any plans. She manages to go to school frequently enough, but still struggles with feeling part of her peers, it is a very difficult age anyway to know where you belong, but missing lots of school (she missed about 3 years total), and going in just on and off, is never easy. However her school itself has been very supportive and very helpful.

Finn has now finally got his room sorted and has a proper boys room (well, proper as in now blue, and no more pink fairies – used to be Nia’s old bedroom), and Mickey Mouse is currently his favourite. So we decided to go for posters so whenever he changes his taste, we can just redecorate by changing posters, no stickers like before that just don’t seem to come off again. He is such a funny little character and loves to get any mail with his name on. This morning Nia got 3 pieces of mail (two of them hospital letters, so not that exciting), and he got none – I asked him if he was sad, and he shook his head… then a few minutes later he said that he is really disappointed… had no clue he even knew what it meant.

Both kids really enjoy their mail… Nia especially from her post pals that send mail on a regular basis and she gets to know them, and Tony’s regular shipment of Amazon books, and Finn he just loves getting mail… he usually carries it around all day, pretending to read it (and well, a few cards we had to read so many times that he actually knew them by heart). I always feel humbled by all of you taking their time bringing joy to my children – often something that is the parents main priority but so often with the challenges of managing this horrible disease gets overshadowed. Thank you so much!

Update 24th May 2011

The last few months we have been trying to settle into a routine at home which is always difficult after months in hospital and lots of ups and downs with Nia’s blood count. Nia is now on a 24 month maintenance chemo programme – after the first 6 months we didn’t achieve the level of chemo she should have – it feels like a dance – a few steps forward (adding/increasing chemo), then gigantic leaps backwards (stopping all chemo due to her blood count crashing). However, she managed to go to school a bit in early May (after over a year out again), which she enjoyed, but understandably was also very nervous. Her hair is coming back a bit (still quite short), and she enjoys wearing nice hair bands and bits that make her look more like a girl… the worst is when people mistake her as a boy (even when she is wearing girlish clothes – you wont believe how ignorant a lot of people are). She is still on her 4 weekly high dose steroid pulses for 5 days, which she really struggles with and we seem to plan our lives around those days since she usually is not able to do anything.

She enjoys playing with her little brother Finn, who is now nearly 3 and such a funny little fellow. Similar to Nia, he spent most of his life isolated from other children, since we did not want to risk him getting infections and spreading them to Nia. He made a little friend at the playground that he sometimes plays with though and enjoys it so much. So hopefully if Nia settles into school and her count stays more stable, he can start preschool in September.

Both of them love getting mail and whenever they hear the flap of the mail box in the morning they nearly race to the door to see if it is something for them. Finn can now identify all of our names and hands around whose mail it is (if Nia did not beat him to it).

Update 3rd February 2011

Thank you for all Nia’s post over Christmas! Post Pals is such a big part of Nia’s life now and definitely brightens up her day. Thank you for all your wonderful work and dedication.

Update 22nd November 2010

Nia has now finished her high dose chemo and is getting at least 2 years of maintenance. So we should be home a lot more, but since her bone marrow is so weak, just the first oral chemo made her really neutropenic and crashed her count (so we’ve had to stop it already). However there is no guidance of how much chemo/what combination chemo is best in Nia’s case – all the treatment plans after relapse are gearing towards a bone marrow transplant, but since she already had one, we just have to hope that keeping her on enough chemo to not let her relapse again. She is still however not allowed back in school (maybe spring 2011) and it is difficult to keep her happy and cheerful at home. She has monthly steroid pulses for 5 days which make her feel really miserable, make her diabetic and often make her wheel chair bound, so we are trying to make the most out of every day when she feels well enough.

Nia is really looking forward to Christmas, and is making lots of plans on how to decorate our house – the last two years we have not decorated much, in 2009 we even had a Eastmas (Christmas at Easter) since she was in hospital over the Christmas period – so fingers crossed we will be at home this year!

We are still in Oxford at least once a week and Nia is always excited to get some post when we go there since we usually spend most of the day in hospital. Thanks again for all your kind cards, letters and presents – this month Nia got a bunch of hand made cards from an English class in Slovenia, which was so lovely.

Update 30th September 2010

Sorry for not updating for a while – Nia is currently recovering from another high dose round of chemo, which would have kept her in hospital, but since luckily there were no beds available and Nia was relatively well, we spend a lot of time isolated at home and in and out of our local hospital. I am currently giving her IV antibiotics three times a day since she had a nasty line infection, but is recovering now. If her count recovers, the next round of high dose chemo is due to start next Wednesday. We hope to be back home by Halloween at the latest since this is Nia’s favourite holiday and she really hopes to have a little party at home with some of her friends and dress up.

Nia loves all the mail she is getting, and especially some of the regulars that she gets to know and feel like they are part of our family. Thanks especially to Rosie, Mandy, Gracie and Charlotte – just to name a few – you all definitely achieve smiles on my girl’s face and magically always seem to time your post when Nia really needs cheering up. We had a very low time with two of her oncology friends dying – a lot to deal with emotionally for a 10 year old. So thank you so much to all of you!

Update 5th August 2010

Nia is currently recovering from another high dose chemo round, but since her bone marrow is weak due to the previous transplant, the recovery always takes a lot longer than expected. We are still not sure if she is going for a second bone marrow transplant (which would not be done in the UK) or if we are going with more high dose chemo and targeted therapy.

Nia loves getting her mail, and she has a few people that write very regularly which is lovely since she gets to know them. It is particularly nice that some teenagers are also writing – for a 10 year old that is pretty cool. She got lovely mail from Gracie’s friends who had a sleep over and I think she felt a bit like she was part of it all. I am really sorry we do not get the chance to write back very often, and sometimes she gets nice gifts (recently a crystal growing kit) that it was unclear from whom. Finn recently got a card as well and was very proud of it – he is so used to Nia getting mail, and he was running around all day hugging his card (with a boat on it). You all definitely make my girl smile – which is priceless for me.

Update 6th July 2010

We have a mixed bag of news – good news was that after her induction, the bone marrow cleared and her donor cells came back, but then the bad news was that cells are back in the CNS (central nervous system) which now requires more intense treatment. She has at least two big blocks of chemo in front of her – one that is 7 weeks, the next that it 9 weeks – and with Nia being Nia, most of those blocks will take longer as well as radiotherapy.

I am sorry that we cannot thank all of you personally for your kind letters and cards – Nia loves getting her mail nearly every day – she copies all the email addresses with the intention to write back, but so far has not had the energy to do so.

Story written 2006

Mollie was diagnosed with Foetal Warfarin Syndrome and Kyphoscoliosis on my 20 week scan, we were unsure of what to expect.

When Mollie was born she had numerous tests, we were told that she also had Dextrocardia and that one of her lungs wasn’t formed properly, she was also profoundly deaf in her left ear.

It wasn’t working as well as they thought it would with Mollie wearing her spinal brace, so at a month old Mollie had to have her first operation as she was unable to sit. It was really hard because she was so young and it wasn’t long before Christmas. Mollie came out of hospital 1 week before Christmas but was rushed back in on Christmas day with pneumonia, it was her first Christmas.

When Mollie had an MRI scan we found out that she has Chiari Malformation as well. Mollie had another operation in February of this year, so we are hoping things are going to be a lot better as she gets tired very quickly at the moment.

Update October 2014

Mollie is now moving on from Post Pals. Thank you to everyone who has supported her and her siblings over the years that she has been featured. The post has been much appreciated.

Update 30th April 2014

Mollie had a hearing test last week and although her hearing hasn’t got any worse in her good ear, she wasn’t very happy because they wouldn’t give her a hearing aid in the one that’s she’s deaf in. It frustrates her because people keep talking to her in her deaf ear.

Update 23rd April 2014

Mollie is being referred back to the hospital as she has been getting a lot more back pain lately. She is also going for a hearing test this morning.

Thank you for our post.

Update 30th October 2013

Mollie had some bad news at the hospital, her new consultant has decided that it’s too dangerous to do her spinal surgery, even though her old consultant said he would. He also told her that the reason she’s been having trouble with her breathing is because her ribs aren’t expanding enough, but there’s nothing he can do. He also said the reason she’s been getting pains in her ribs is because her hips are lopsided, but again there’s nothing he can do for her so he discharged her. Overall, not a good day. She goes to see the neurosurgeon next month so hopefully we’ll get some good news then.

Update 21st September 2013

Mollie has been having breathing difficulties but is going to hospital on Wednesday for a check up.

Thank you for Mollie’s post.

Update 3rd June 2013

Mollie has been having problems with her legs and bladder and we’re waiting for an appointment for the doctors.

Thank you to everyone who has sent Mollie post.

Update 31st March 2013

Mollie is currently getting a lot of back pain and having problems with her hips so we are waiting for an appointment to see her consultant.

Thank you to everyone who has sent post this month and for her birthday cards too.

Update 16th January 2013

Mollie is full of cold at the minute and has a bad cough. She goes to SCH next week to see her neurosurgeon to check everything is ok.

Thank you for her lovely post.

Update 24th November 2012

Mollie went for a check up on her spine last week and we were told that the hump on her back is getting worse so they’re going to keep an eye on it.

Thank you for all of Mollie’s post, it is much appreciated.

Update 24th September 2012

Mollie is enjoying being back at school and seeing all her friends. She was getting pins and needles in her hands whilst we were on holiday but has only complained a couple of times since we got home, so we are hoping it’s nothing serious. She sees her consultant next month so we will find out either way.

I would like to thank everyone who has taken the time to send Mollie post this month.

Update 14th March 2012

Mollie went for a check up last month and they said if her headaches don’t stop in a couple of weeks then she will have to have a lumber puncture. She will also have to go for an mri in a couple of months and if it has come back again then she will have to have a drain put in her spine, so we are hoping it doesn’t.

Thank you to everyone who has taken the time to send Mollie a card, email or gift this month as it’s very much appreciated.

Update 9th February 2012

Just to let you know that Mollie is now home and doing well (apart from falling down the stairs and having a lovely carpet burn on her leg). I would like to say thank you to everyone who has sent her post and good wishes.

Update 2nd February 2012

As Mollie’s brain surgery failed last time, she had to have it done again yesterday, but there were complications and she is in ICU.

Update 22nd January 2012

We have just found out that Mollie goes for her surgery on the 1st February so hopefully she will be feeling ok for her birthday as she is wanting a party.

Thank you to everyone who has taken the time to send Mollie a card, letter or gift, as it is very much appreciated, especially with everyone struggling money-wise after Christmas.

I think what Post Pals do is amazing; they manage to put a smile on a sick child’s face and don’t forget about their siblings who also need cheering up. Keep up the good work. I know how much it means to my children, so I can imagine how much it means to the other many ill children too.

Update 22nd November 2011

Mollie received her results for her MRI scan on Friday and unfortunately her operation in July wasn’t a success and it has grown back twice the size. They wanted to operate as soon as possible but Mollie has asked if she could have it done after Christmas, as she doesn’t want to be ill then. They have agreed to do it in the New Year.

Thank you for sending post to Mollie, it is much appreciated.

Update 16th October 2011

Mollie goes for an MRI next week to check to see if the operation was successful and then gets the results in November.

I would like to say a huge think you to everyone who has sent Mollie cards, letters or a gift this month.

Update 25th August 2011

Mollie has recently had her brain surgery and we went to see the consultant the other day and all was well. However, she is still having pain in her neck and some of the symptoms and although he reckons they should go soon, he wants her to have another MRI just to make sure it was a success.

I would like to say a huge thank you to everyone who has sent Mollie a card while she was in hospital and who has taken the time to write to Mollie this month. She loved all her post and it is very much appreciated. I would also like to say a huge thank you to everyone who has sent Mollie a gift, especially the Bratz type doll which she loved – she even went and bought another one with the money she got. We also made the badges the other day which she was sent and her brother made the keyrings with a little help from Mollie. Thank you.

I think what Post Pals does is amazing and it has really helped my daughter. She loved all the letters of support and little gifts whilst in hospital and they really cheered her up.

Update 13th May 2011

Mollie has been doing her SATS this week. She is also due to have an MRI next week ready for when she goes to see the consultant next month. This is to see if they think they need operate on her brain this year or not.

Thank you for all of Mollie’s post this month.

Update 3rd April 2011

Mollie had a great birthday. She had a friend to sleepover and went to see Justin Bieber – which was good, even if I do say so myself.

We had a bit of a shock when we went to see Mollie’s consultant, as her other consultant had retired and so she had a new one. We asked about the surgery she was going to have and the consultant shocked us by saying he was reluctant at the moment to do surgery. Apparently Mollie’s scoliosis isn’t as straight forward as in other cases and she has got many fusions in her spine and in her neck (which we weren’t aware of until then) and there would be more chance of her either being paralysed or having weakness in her legs. This could all leave her in a wheelchair, which her other consultant had never mentioned before, so it was a huge shock. Now we are just waiting to see if her spine gets any worse (which he is expecting) as usually in other cases once they’ve had surgery to correct the spine it stays like that, but in Mollie’s case it’s continuously getting worse (which we also weren’t aware of) so now we’re waiting to see what it’s like after her growth spurt and then decide what we are going to do.

Update 16th March 2011

Mollie went to see the neurosurgeon last month and they are waiting to see what the scoliosis doctor wants to do about her back, as he thinks brain surgery would help, so hopefully we will find out next month.

Mollie’s also looking forward to her birthday on Friday as she’s having a sleepover and also going to see Justin Bieber next Wednesday. She’s really excited!

Thank you to everyone who has taken the time to sit and write Mollie a letter or card this month or send a gift. I think what Post Pals do is amazing; a simple thing like sending post puts a smile of many an ill child’s face.

Update 10th January 2011

Mollie has just had her operation on the cyst on her neck. It was bigger than they expected so surgery took longer but it was a success and she is recovering well at home now.

Mollie’s in love with Justin Bieber at the minute and is hopefully going to see him in concert in March for her birthday.

Thank you for Mollie’s Post Pals post, it’s very appreciated.

Update 21st December 2010

Mollie’s having surgery on her neck for a cyst. She will be in for a few days but has got to have 2 or 3 weeks off school as they have got to cut part of her tongue away at the back and bone in her neck.

I hope everyone at Post Pals has a Merry Christmas and a Happy New Year.

Update 9th December 2010

Mollie is due to have surgery on the 6th January on her throat.

Many thanks to everyone who continues to send post to Mollie.

Update 14th August 2010

Mollie is being referred back to the hospital with her neck as the lump is getting bigger and spreading.

Thank you to everyone that has sent Mollie post, she really does appreciate it.

Update 5th June 2010

Mollie goes for the results of her MRI next month to find out if she needs the operation or not. She also has a lump on her throat which is getting bigger so she has to have that checked out as well.

Post Pals always manage to put a smile on ill children’s faces and also their siblings who sometimes feel left out.

Thank you to everyone who has taken the time to send Mollie a present this month, it’s very much appreciated.

Update 1st May 2010

We are currently waiting for the results of an MRI scan that Mollie had last week to see if she needs an operation for her Chiari Malformation as her symptoms are getting worse.

I think what Post Pals does is amazing and they manage to put a smile on my daughters face. She even waits for the post lady to come and gets a biscuit off him for the dog! Thank you to everyone who has taken the time to send Mollie post this month.

Update 10th April 2010

Mollie is still waiting for an appointment for an MRI scan as her chiari symptoms are getting worse and they are thinking of operating.

Thank you to everyone who has taken the time to send Mollie a card this month as she really looks forward to the postman coming to see if she has any post.

Update 19th March 2010

Mollie has been to see the Neurosurgeon today and they are thinking of operating on her chiari malformation as her symptoms are getting worse. They are going to do an MRI scan and take it from there.

Update 6th February 2010

Mollie goes to see the neurosurgeon next month to find out if and when they are going to operate and also for a check up on her spine.

We would like to thank everyone who has taken the time to send Mollie a card, letter, or gift this month, it is very much appreciated.

I think what Post Pals do is amazing. They always manage to put a smile on sick or seriously ill children’s faces and also remember their siblings so they don’t feel excluded. Well Done Post Pals.

A big thank you to the McQueen Family for the Lego Bionicles that they sent Morgan yesterday. He really loved it and it gave us a couple of hours peace as he made a fort for it with a shoe box and was playing with it for hours. It’s the little things that count.

Update 2nd December 2009

Mollie has been waking up a lot lately with bad cramps in her legs and has been getting a lot of headaches. She is really looking forward to Christmas though and thank you for her post.

Update 2nd November 2009

Mollie has now finished dancing as she was being bullied. Her legs had also started to ache a lot more with it.

Thanks for the mail that Mollie has received this month.

Update 4th September 2009

Mollie has had a really good month and thank you for the cards and gifts she received in August.

Update 20th August 2009

Mollie has had a good month and thank you for the Post Pal mail that has been sent to her.

Update 18th July 2009

Mollie as had a really good month this month, but was upset that she wasn’t picked at dancing to go to Disneyland Paris with most of her friends in a parade.

Thank you for the post Mollie has received this month.

Update 16th June 2009

Mollie had her sports day last week but was upset because she came last in all her races. She has currently got a bad cough again too and is up most of the night with it.

Thank you for the post she has received, we think what Post Pals do is brilliant and it cheers the children up.

Update 4th May 2009

Mollie has just been for a lung function test and they are looking into her maybe having some special shoes as one hip has gone higher than the other.

Mollie has also got her dancing show this weekend.

Thank you to everyone who has sent Mollie a card, letter, or gift this month. It is very much appreciated.

Update 7th March 2009

Mollie is currently having trouble with her throat and is awaiting an appointment at the hospital to check the cyst isn’t getting any bigger.

Thank you for all the cards, letters and gifts Mollie has received this month.

Update 11th February 2009

Mollie has had her operation postponed.

I think what Post Pals do is great and my daughter really looks forward to the postman coming. Thank you for all her post.

Update 28th November 2008

Mollie had a routine check up at the hospital a week ago and they have decided that they want to operate on her brain sooner rather than later which was a big shock.

Thank you for all Mollie’s post this month, it makes her day when she receives post.

Update 6th November 2008

Mollie goes to Sheffield next week for a check up so hopefully everything will be ok.

Thank you for Mollie’s cards this month. Post Pals cheers up the children who are feeling ill and it’s lovely to see the smiles on their faces when they open their mail.

Update 22nd October 2008

Unrelated to Mollie’s condition, her brother Daniel has been admitted to hospital due to a large mass in his knee bone. He now has his own page which can be found here.

Update 12th October 2008

Mollie has had a chest infection this month and has been poorly with it.

Thanks for the post sent to Mollie this month.

Update 30th July 2008

Mollie has been having more bad headaches this month and we are waiting to see the consultant.

Thank you for the cards, letters and gifts this month.

Update 7th July 2008

Mollie has had a chest infection on and off for the last 6 weeks, so she has to go to the hospital to have a lung test.

Thank you for all the smiles that you put on the children’s faces when they receive post and thank you to everyone that has sent Mollie post this month.

Update 29th May 2008

Mollie has just finished her show but has had bad pains in her legs and lower back. She loved being on stage and dancing though.

Thank you for the post Mollie and her siblings have received this month. Post Pals brightens up my children’s days.

Update 14th May 2008

Thank you to everyone who has sent Mollie a card this month.

Mollie is practicing for her show, so she has had a lot of leg cramps these last few weeks. She has also got to go for another x-ray on her spine because she has been getting a lot of backache lately.

Update 16th April 2008

Mollie has been having a few sleepless nights this month due to pains in her legs as she has been practicing for her show in May, but she will not give up as she is really looking forward to it.

Thank you for the letters and cards that Mollie and her siblings have received, they are very much appreciated.

Update 11th February 2008

Mollie is due at Sheffield on 14/02/08 to check that her spinal fusion operation was successful.

Post Pals is brilliant and I look forward to all the post that I receive. Thank you!

Update 17th December 2007

I went for a hearing test this month and nothing has changed. I am still deaf in my left ear, but my right hasn’t got any worse.

Thank you for all my post this month.

Update 30th October 2007

I am still enjoying my swimming lessons even though I was upset last week because everyone in my group had moved up to the next level, including Morgan my brother, but my mum says that everyone is different and that I will do it in my own time and not to worry. I go to the hospital next month to the scoliosis clinic and also to see the neurosurgeon so hopefully everything will be ok.

I would like to say a big thank you to everyone who has sent me something this month.

Update 1st October 2007

Mollie’s doing fine; we have just had her hospital appointment to see the Neurosurgeon postponed to next month and also a new appointment to the Scoliosis clinic come through, so hopefully everything will be ok.

Thank you to everyone who has sent Mollie a card, letter, email or gift this month, she has enjoyed every one of them and even took them to school for show and tell.

Mollie still loves Barbie, Bratz, reading, colouring, playing with her dolls (she’s even given her order for a new Baby Alive for Christmas already) and basically anything girlie.

Update 7th September 2007

We’ve just come back from our holidays. Molly had a great time but is very tired with bad headaches. She is still not sleeping very well and has started with nightmares quite a bit, but hopefully they will pass.

Thank you to everyone for all the post this month.

Update 14th August 2007

I have been having a few bad headaches over the holidays so I have got to go and see the consultant (not looking forward to that). Mum is worried because they have been ‘knocking me off my feet’ as mum says and I have been in bed for days at a time.

Thank you to everybody who has taken the time to send me a card, write me a letter or send me a gift. I have loved every one of them.

Update 18th July 2007

I am getting on really well and I had my first sports day last week and I really enjoyed it.

I would like to say thank you to every one at Post Pals, it is lovely what you do and if only you could see the smile on my face and all the other children’s faces every time we get post. All cards, letters and gifts are very much appreciated and loved.

Update 10th June 2007

Thank you to everyone who has sent me cards, letters and wonderful gifts this month.

Update 21st May 2007

Nothing has really happened this month apart from I’ve had a cold and now I have passed it on to my mum and dad (I like to share!)

I would like to thank everyone that has sent me a letter, card or gift as it is very much appreciated.

Update 3rd April 2007

We have finally heard about the lump on my throat. Luckily, it was just a cyst and I won’t need an operation on it unless it gets bigger. Apart from that everything is ok.

Post Pals really cheers me up every time I get a letter or card or even a present and I would just like to say a big thank you to everyone who has sent me post, including birthday cards and gifts.

Update 3rd March 2007

I have got to go and have a biopsy on a lump on my throat (I am not looking forward to this).

I would like to say how much I look forward to the letters and cards I receive and how much they cheer me up. Thank you for all the stickers and bobbles that I have received, I have had great pleasure in using these. I would like to thank everyone for my all my post, it was very much appreciated.

Update 9th January 2007

A lump has been found on Mollie’s neck so she has been referred to the hospital for tests to find out what it is, hopefully it won’t be anything serious but we will let you know. She has also been put on a different type of milk as she has lost some more weight.

We’d just like to say thank you to everyone at Post Pals for their wonderful presents and cards which made Mollie’s Christmas so special. It was lovely to read all the messages that you sent and Mollie wrote thank you notes so you should receive them shortly. Also a big thank you to everyone who sent presents to Mollie’s brothers, especially Georgies Fund who sent them wonderful presents. Thank you very much!

Update 1st December 2006

As Mollie as only been on Post Pals for about a week we are new to this. We were surprised how quickly she got a Christmas card though and would like to say a big thank you to Kate Dickinson as she was really pleased that she got the first card in the house, and I mean really pleased!

Mollie is really looking forward to her school Christmas parties as she has missed the last 2 due to hospital appointment and being ill.

Mollie just loves playing with her dolls (and has already given Santa her new list of dolls she wants this year, there’s only 6!) She loves colouring and at the moment we are making snowflakes to put around the house. She also loves writing and reading and was really pleased yesterday because she had gone up to level 9 in her reading books. She loves ballet and everything girly basically!

Story written 2005

Megan was diagnosed with Neuroblastoma stage 4 in September 03, she was 6 months old. Megan’s tumour was in her chest compromising her breathing. Megan was transferred to London’s Great Ormond Street for treatment. The tumour in Megan’s chest was crushing all of her internal organs, making her unable to breathe on her own. She had to spend 2 weeks on a ventilator.

Eventually with chemotherapy the tumour was starting to shrink and Megan could be taken off the ventilator. She then had to have Chemotherapy to try and shrink the tumour in her chest and clear her bones, bone marrow and other organs of the cancer cells. This was a very rough time on the whole family, Joe had to go and live with my mum and dad for seven weeks.

Following chemotherapy test revealed that the tumour had shrunk and that the bones were nearly clear. Two more rounds of chemo would be done and then Megan would have surgery to remove the tumour. Surgery was scheduled for March the 26th 04, before surgery Megan had to have an angiogram and there was concern that a main vessel was running through the tumour. The angiogram showed that aorta was running straight through the middle. This would make surgery more difficult. Megan had surgery on March 26th, the operation was very successful, doctors managed to remove all the tumour apart from the small amount in her spine. Surgery was a complete success and Megan didn’t need any more treatment.

Megan is currently NED which is the equivalent of remission. Unfortunately due to spinal cord compression Megan has been left paraplegic has spinal scoliosis, and neuropathic bladder and bowel. We are just waiting for a wheelchair which should make life a lot easier for her and prevent her from getting so frustrated. She goes to a special needs nursery which she really enjoys.

Megan has a 20-30% chance of the Neuroblastoma coming back and she has to have MRI’s under general anaesthetic every 4 months.

She is a very happy little girl who enjoys life, but does get frustrated as she can’t do more.

Update 30th March 2013

Megan has just spent 2 weeks at Stanmore royal national ortheopedic hospital for intense therapy. She can now dress herself and has been learning to swim. In 4 days she has earned not only her 5 meter badge but also her 10m and I’m so proud. Stanmore have also decided Megan should be wearing a spinal brace again.

We have decided that it is time for Megan to move on as a Pal. Post Pals have supported us for a very long time and you have all become one of the family. Megan has had her final big operation (hopefully) and we feel it is time for another child to take her place and benefit from cheery post. I can’t thank you enough for everything you have done for Megan, Joe, and us as a family over the years. We would love to keep in touch and still attend the Post Pals party in the summer xxxx

Update 30th November 2012

It has been a tough month for Megan. Following her spinal fusion in October we have had problems with the wound. The stitches popped at the bottom of the wound and we have had several trips to A&E and GOSH. After what felt like several wasted trips we saw the spinal surgeon. He said that the wound would heal but would take a long time and wouldn’t be so neat. He felt the best thing was to re-operate and clean things up and re-stitch. This would make things heal quicker and enable her to get back to school. Well, we turned up for surgery and just as she was going to theatre they cancelled. So yes its healing slowly, will be an ugly scar, and I was very cross they cancelled again. We are going to leave things until we see the surgeon in January.

I am going to Lanzarote with Joe on Sunday for a week. He’s really feeling the last 9 years and we need time together. I don’t think we realise the effect on siblings. Megan has a very busy week when I’m away. A very special day which i am unable to share at the minute but will very soon.

Thank you for our post and to Becki for the personalised tatty teddy card. Massive thank you to Lisa Archibald for the fijit she sent Megan. Lots of giggles coming from behind the bedroom door!

Update 12th November 2012

Well, where to start? Megs was finally admitted to GOSH for a spinal fusion October 17th. She went to theatre around 10.30am and we didn’t get to see her until 5.20pm. It was the longest 7 hours of my life. Anyway, the surgeon was happy with how it went. She didn’t recover so well initially though. She was very poorly, in pain, and kept spiking a temperature. Slowly but surely we got there and came home after 8 days. We’ve had some healing issues and been to A&E a couple of times. The wound has opened at the bottom and we’ve had to be reviewed at GOSH today. The stitch was exposed so that has been removed and the wound had a good clean. The spinal fellow has said the wound will take ages to heal and no baths for a while. Also, there are some concerns about her circulation as one leg is hot and one ice cold, so we need to keep tabs on that.

Massive thank you for messages of support and cards, they have really lifted Megs spirits. She’s been quite down and she loves receiving posty. Also, huge huge thanks for the dog balloon from Post Pals. We have exciting news next month, so watch this space.

Update 3rd October 2012

Well Megan was due to have spinal fusion done on September 26th. GOSH cancelled less than 24 hours before surgery. Megan was upset as she had been all prepared. I was completely devastated and cried buckets for about 4 hours. They have rescheduled for October 17th but i don’t trust them until she’s in theatre now.

So, we have to keep her germ free now which isn’t going to be easy considering everything that is flying around.

We have ongoing issues with Megan at school at the minute. She is really struggling being the only child in a wheelchair. She feels she has no friends and it is all because of the chair. We’re not sure how to deal with this but maybe some time off to have surgery will give her time to think.

Thanks for the post, Megan received some Tracey Beaker dvds that she loves!

Update 9th September 2012

Firstly I’m sorry for the lack of updates. I have been going through an extremely difficult time.

We have had a very busy summer. We went to Hunstanton for a week to families against neuroblastoma holiday caravan. We had an amazing time and the weather was fairly kind to us. We went to the sealife centre, boat trips, theatre and spent time on the beach. There was another family staying in FANS other van next door and it was lovely to spend time with them. We talked about the kids illness and catheters and it just seemed so normal.

Health wise Megan is doing ok i guess. She has actually got a dislodged spinal rod so won’t be having her lengthening this month. The doctor feels she has little growth potential. He says the best thing would be a spinal fusion. I was devastated to hear this as she is still only 9. Anyway, long story short, we have decided to go with their decision. Megan is having her spine fused on September 26th. Im very anxious about this but know it is the right decision for her. We will be spending a minimum of 10-14 days in GOSH.

Update 12th April 2012

Megan had an amazing birthday; I can’t believe she is 9 already. She had a surprise party in the hummer limo that did the Jeremy Kyle show. It was a surprise and she was thrilled.  Thank you for the lovely cards she received.

Megan has been doing her own catheters via her mitrofanoff for about a week now. She is so independent and coping really well. Its taken a while but i can now see the huge benefits. She has also just been reviewed and has been given a new spinal jacket. It is hard at the back and a corset at the front so hopefully she will tolerate this one.

We haven’t been doing much over the holidays. Mick’s mum has been very poorly so we’ve been at the hospital. She’s having tests but looks like it could be bowel cancer. Megan and Joe are both very upset but doing ok.

Thank you for the continued support and a massive thank you for the letters from Dottie, Megan loves getting them.

Update 11th November 2011

Well, where to start! I have so much to tell you all but at the moment it is a big secret so will share with you all next time.

Megan is doing ok; she has now started the hormone injections and seems to coping fairly well with no side effects. I will be doing the next injection with the community nurses and then I’m going it alone and Megan will be much happier with this. I have to say she was a complete superstar when she had the first one jab, no tears or anything.

Well we’re going to pre-op next Thursday at Great Ormand Street and then surgery the following week. She is having a Mitrofanoff/ACE and bladder augmentation. She will be in for about 10-14 days if all goes well and then lots of TLC at home until the end of January. We’re very anxious about this op but Megan can’t wait to see the after effects and hopefully be more independent. So, the hospital will be home from 22nd November for 2 weeks or so.

We’re still waiting for appointments with orthopaedic surgeon and neurodisability team.  Nobody seems to know anything which is frustrating as we need to see them ASAP.

On a high note, Megan’s school is finally adapted (well, nearly). Major building works have now been completed and it is all the small jobs that are being finished off. We have 2 lifts and Megan is finally, after 4 years, able to access the school on her own now.

Well, I will update next time with our very exciting news!

Huge thank you, as ever, to Wendy who continues to send hand made cards to Joe and Megan, they’re always gorgeous. Huge thank you to Viks too for the flutter fairy. It always brings a tear to my eye to read some of the other kids’ updates and the kindness that strangers always show to them and Joe and Megan too.

Update 31st August 2011

Well, what a hectic summer. Megan had spinal surgery at the end of July and is recovering well. They managed to extend by 7 mm which is great. Sadly, we had a rotten time in GOSH this time. The anaesthetist knocked her tooth out and didn’t realise until we saw her chewing it. It could have been so dangerous. The ward had no pillows and was being run by agency nurses who didn’t know anything; it’s fair to say we were pleased to come home. Megan’s MRI of her brain came back normal which is a huge relief. She is going through early puberty and needs to start hormone injections next week. I am going to do them as Megan is needle phobic and would rather this. We’ve also had an X-ray done of her hips which shows they are subluxed and she is now being referred to the orthopaedic surgeons.

Joe had a busy week at the beginning of the holidays. He went away with summers trust, which is a charity that provides activity holidays for young caters. He had an amazing week and didn’t phone home once! He is starting high school on Wednesday and is terrified. I’m sure he will be fine and make lots of new friends quickly. To finish off the holidays we are going to London on Saturday. We’re planning to go on the eye, river cruise, pizza express for lunch followed by the aquarium. A lot to do in one day!

Thank you to all you amazing people who continue to put a smile on Joe and Megan’s face. Also massive thank you to Debbie who sent a card to me and Mick letting us know it was her first time posting to a Pal and wanted to check she’d sent the right things. Honestly, a cheery letter really makes a huge difference. Huge thank you to the cards sent for Joe’s birthday too. Viks we can always rely on you for some confetti all over the floor!

Megan wants to say a huge thank you for regular updates from Dottie, she gets really excited when Dottie’s letters arrive.

Update 1st May 2011

I can only apologise it has taken so long to do an update. Things in our household have been hectic to say the least.

Megan had an amazing birthday in March and thank you to everyone that sent cards for her.

Megan has recently seen the Hormone specialist and they have referred her for some tests to determine if she is going through early puberty. She will be having an ultrasound of her pelvis and blood tests done on 6th May at GOSH. If the results come back positive then she will need hormone injections to stop this happening until she is about 12. Megan has also recently been reviewed by the Spinal injury consultant at Stanmore. They are very concerned about her posture due to the leg spasms and scoliosis. Although the scoliosis is managed through spinal rods, her pelvis appears to be completely offline with her trunk. One of the biggest issues we have is trying to get good enough correction with the wheelchair. The specialist is going to speak to GOSH and decide whether Megan should be fitted with a Baclofen pump. They feel that this would help the spasms in her legs which in turn will help with spasms in her trunk making her so lopsided. We are a little unsure of which way to go with this; it would mean more surgery for Megan to endure so we need to speak to the team to see the best way forward. Megan is due to have some more Botox in the summer but we’re just waiting for a date. Megan will be due more spinal surgery in July to lengthen the rods, but again we’re waiting for a date.

The bowel and bladder problems have got worse and this is something I need to speak to GOSH about. She is leaking in between catheters and having more bowel accidents at school. This of course upsets her and she wants to know when she can have the Mitrofonoff/Ace procedure done. Again, she is on the waiting list but no-one seems to be able to tell me when this will happen. Everything seems to be a waiting game but this makes for a very unhappy Megan.

Joe was refused his place for high school so I’m having to battle this one also. He is the only child in his class that didn’t get his first or second choice. He has been offered a school the other side of Croydon which would mean he has to get 2 buses on his own each way everyday. The council might think he is old enough to do this but I’m sorry the world is a scary place and it just isn’t happening. I have applied to appeal and again I’m just waiting for a date. Joe was very upset by this decision as you can imagine. He cried solidly for 12 hours and had to have a day off school. I have recently spoken to his teacher who has said that his behaviour has changed since hearing the news. He isn’t being naughty and continues to work hard, but is beginning to talk a lot more and the teacher has just noticed a change in his mood. I really wish the people on the panel at the council could see how much he has already been affected by Megan’s illness/disability. I had a supporting letter from our GP but have been told it can’t be forwarded to the appeals team as there is no medical reason for him. I was really hoping that for once someone would give this family a break and not make us fight for everything.

Huge thanks for the Easter parcels that were sent to both Joe and Megan. Joe loved receiving the homemade cake lollies. Megan received a lovely big parcel containing lots of Easter crafty packs and chocolate. This kept Joe and Megan quiet for ages and gave me some peace! We had a very quiet Easter break at home but did manage to go to Littlehampton for the day then a meal on the way home. The weather has been superb so it is just been nice to have fun in the garden.

Mick is going for a week respite break in May with friends to Spain so I’m home alone with the kids. I’m secretly dreading it as know I will miss him like mad and will have no help with Megan’s day to day needs. The lifting is the biggest issue, but on the plus side I will be having a week respite in June. My sister and I are going to Portugal for a week, again I will miss everyone like mad, but the break will not come soon enough.

A massive thank you to Jane for the bracelet she sent through for Megan. Megan is convinced she went all the way to Lanzarote especially to get Megan her pressie, she loves it. Also, a huge thank you to everyone that continues to send posty to Joe and Megan. I’m not going to name you personally in case I forget someone, but you all make a huge difference to their lives. Joe and Megan especially love the post from Jane and Megan loves hearing about what Dottie has been getting up to. Rufus has been a little lazy lately but I have plenty of photos which I must forward on and add to his facebook page.

Update 2nd February 2011

I can only apologise for no update for December, I thought it had been sent off and have just found it. Thank you to everyone that sent cards and gifts to Joe and Megan. Megan had a dreadful Christmas and spent most of it unwell. She woke Christmas morning being sick and was ill for about 8 days. I’m fairly sure she had swine flu.

We have had many appointments with Megan already this year. Megan is officially now on the waiting list for the Mitroffonof/ACE procedure. I spoke with Great Ormond Street and have been advised that surgery is likely to take place in September/October time. They have said surgery will be about 6 hours and she will be in hospital anywhere between 2-3 weeks, all being well. They have advised she will probably be off school for anything up to 3 months. I am dreading the surgery but know it is the best thing for Megan in the long run. We are seeing the Botox team for assessment next week; her legs seem really tight so not sure how much they think the botox has helped.

We’ve had huge problems with Megan’s wheelchair; she really has grown so much. After countless phone calls Megan is now the proud owner of a new 15″ chair. We are still waiting for a special back and cushion but she is much more comfortable now. Building works should commence very soon at school so hopefully by September Megan will be able to access all parts of the school by herself.
Megan has really been having a very tough time lately. One of her friends at school had a birthday party and Megan wasn’t invited (one of the only ones not invited). She was absolutely devastated and had a dreadful day at school on the day of the party. All the kids were talking about the party and Megan’s carer said she was very sad and upset all day. She is blaming her wheelchair and saying she feels really left out. We picked her up after school and she spent nearly 2 hours screaming, punching telling me it was all my fault she is in a wheelchair and had cancer. It was so upsetting to see her like this but how can I deal with it? I know things will get far worse before they get better and this will happen again. We are due to see the team at Stanmore in March so I’m going to organise for her to see the Psychologist. She explained to me a while back that it will come to the point where Megan blames me and gets very angry about her illness/disability. I really didn’t think I would be dealing with that now though.

Thank you to everyone that continues to send posty, it really brightens the darkest of days. Thank you for all the postcards Megan has received, she loves seeing all the different countries. Thank you for Megan’s disposable camera, she is having so much fun snapping away. Also a huge thank you to Jenny for Joe’s Autograph book and photo album.

Update 3rd December 2010

We have had a few tough weeks with appointments etc. We saw a bowel specialist at Stanmore. Due to the location of Megan’s spinal injury her bowels will always be erratic. If the damage was higher or lower her bowels would be more manageable. The specialist feels Megan’s best option is to have the ACE procedure. This will be done at GOSH. We also saw an Urology registrar at GOSH on Monday. Unfortunately the specialist wasn’t there so no final decisions could be made. The registrar has said that Megan will need a Mitrofonoff and she has been put on the waiting list. All we have been told is she will be in surgery for 5-7 hours. I have been looking into both procedures and it is major surgery. They will also enlarge her bladder at the same time. We are terrified at the thought of what she will go through but know that the long term benefits far outweigh anything else. Megan is due to have spinal surgery on Tuesday. We’re still waiting to hear if this will go ahead with the recent weather.

Joe and Megan have enjoyed having time off school this week. We have managed to get Megan out in a sledge and they have both loved playing in the snow.

Thank you to everyone that has sent card/letters/gifts to Joe and Megan. A massive thank you to Dottie for all the updates and a huge thank you for the tatty teddy smelly set Megan received.
I would like to wish everyone a happy Christmas and all the best for 2011. Thank you to everyone that has made 2010 a very special year and a huge thank you to Viks and everyone that keeps Post Pals going xxxxxxxxxxx

Update 31st October 2010

Well, we have just returned from spending a week at The Thomas Ball lodge in New Milton Hampshire. We had an amazing time and the weather was amazing for this time of year. We tried to arrange to meet Dottie as she only lives around the corner but unfortunately couldn’t organise it. Megan seems to have a bug in her bowel and is having very large accidents 4 times a day. This upsets her so much as she is missing out on so much and was unable to go swimming whilst on holiday. Despite this we all had a great week; we went to the beach, spent a day in Poole, went pumpkin picking and then carved them. The hot spot of the whole week for Megan was busting some moves with Sammy seahorse. She really is a disco diva and purple people eater is her favourite party dance.

Back to reality and we’re going to Stanmore spinal unit tomorrow for 1 week. Megan is having intensive rehab so not really sure what to expect. I’m sure it will be a tough week but we will all gain so much from being there. We also have a date through for Megan’s next spinal op – December 7th. Not the best time as it means Megan will miss out on Christmas activities at school but it needs to be done.

A plus for the whole family will be a new arrival very soon. Megan’s big sister, Jenny, will be having a little boy in the next few weeks. She isn’t due until November 19th but has been suffering with very high blood pressure so it looks like she will be having a sweep tomorrow. We’re all really excited and can’t wait to meet their little boy who they will be named Alfie. Jenny has asked me to be a birthing partner along with her husband. I have always wanted to be a birthing partner so think I may be spending my week driving backwards and forwards to Stanmore so I can be there.

Thank you to everyone who continues to support us as a family. Megan received a lovely postcard from Dottie playing in the autumn leaves – she loves it, so thank you for those huge smiles Dottie. Thanks to Dottie AGAIN for all your letters. Megan loves telling Rufus what has been going on. A huge thank you to Kate Dee for the lovely Halloween goody bags Joe and Megan received.

Update 13th October 2010

Firstly sorry for the late update, I’ve been in Cyprus for a wedding so unable to send one.

Things have been fairly hectic for Megan lately. We’ve had lots of appointments and procedures over the past month or so. On a high to begin with, Megan had Botox injections into 3 different muscles in each leg in September. Following a follow up appointment yesterday, it has shown the Botox has been very successful. The measurements in her hips, ankles and knees have improved amazingly well. We are so pleased and also she seems to have fewer spasms in her legs which is great.

We finally managed to have her surgery last week to insert SP lines into her bladder. These were put in so her bladder pressures could be measured following how unpredictable her bladder has been lately. She has been having lots of accidents in-between catheters lately which have really been getting her down. At first we thought this may have been to do with a recurrent urine infection she has been getting. She’s had 4 lots of antibiotics for E-Coli in her urine over the past month. Anyway the tests have shown that Megan bladder is actually too small for her age etc. The specialists want to meet with us to discuss surgery. The want to give her a procedure called ‘Mitrofonoff’. I’m not really sure what this involves but know it is major surgery where they will re-route things so she can do her catheters through a hole in her tummy. At the same time they want to enlarge her bladder using her intestines. If she has this surgery then they also want to do some bowel surgery. I know even less about this surgery other than it is called the ‘ACE’ procedure. I know both surgeries are major operations with risks but they could give her quality of life and a lot more independence.

GOSH are concerned about how all her treatment/operations over the years have affected her physiologically. She is very anxious whenever she is having anything done now. She’s very low about everything at the minute and questioning her disability almost everyday. She’s beginning to get very angry about day to day things. I know it will get harder before it gets easier but it is tearing me apart seeing her suffering like this. I’m going to have a chat with the psychiatrist at Stanmore and see what she recommends.

Megan is being admitted to Stanmore hospital on November 1st for a weeks intensive rehab. I’m hoping that she will get a lot out of it and maybe make some friends in the same boat as her. I’m not really sure what to expect yet as it is the first time we’re doing this. We’re also waiting to hear from GOSH about her next spinal operation which will be done Nov/Dec time. Everything is just so busy at the minute, I feel like I haven’t been at home for months.

We’re away for half term to The Thomas Ball lodge in Hampshire, both Joe and Megan are looking forward to dancing with Sammy seahorse.

The biggest highlight of Megan’s life so far is Rufus. Rufus is a litter mate and was given to Megan by Dottie the Dalmatian. Rufus goes everywhere with Megan, he even shares her bath water. We have set up a facebook page to keep everyone updated on Rufus’s travels. He’s having some lazy time at the minute before he will be very busy looking after Megan when she is in hospital. He’s also looking forward to going to meet Sammy seahorse.

A massive thank you to everyone who continues to send posty to Megan and Joe. Megan loved her ‘summer themed box’ and also a huge thank you for the bracelets that Joe and Megan received at the beginning of the week. Joe hasn’t taken his off yet and even hides it under his school jumper. Megan has loved receiving the postcards that lovely people have sent her from all over the country/world this month too. A huge thank you to ‘Dottie the Dalmatian’ for all the letters Megan has received. She loves hearing about all her adventures and finding what all the other ‘litter mates’ have been up to. A big thank you to Kim Lawrence and family for the lovely September themes box. Megan especially loved the pink butterfly lights, she has had them hung from her curtain pole and are switched on every night when she goes to bed.

Life has been pretty awful lately and it is amazing everything Post Pals do, they certainly are all part of our extended family.

Update 1st September 2010

Firstly I want to say a huge thank you to everyone that has sent posty throughout the summer.

At the end of July we went to Blackpool for a week and stayed at Haven. It was lovely to finally meet up with Linza Corp who runs Families against Neuroblastoma (FAN). We were lucky enough to meet up at Blackpool pleasure beach and also meet some amazing families. We had a lovely 5 days in Blackpool and Joe and Megan went donkey riding and on lots of rides. The weather wasn’t that great but we did manage to have a day in St Annes and found a gorgeous beach where Megan was able to build some sand castles and Joe was able to fly his kite. We were also able to get a few days camping in Bournemouth at the end of August. Megan and I hated every minute as it continuously rained, but Mick and Joe loved it.

Megan was due to go to GOSH for surgery on the 17th August. Because we have had lots of problems with her being wet in between catheters, the doctors wanted to check her bladder pressures. She was due to have SP lines in that would be connected to a machine and this would indicate whether there was any damage to her bladder following spinal surgery. Anyway, long story cut short, it was cancelled due to UTI, as Megan tested for E-Coli in her urine. I was furious as this was diagnosed the week before by GOSH and GOSH prescribed the antibiotics. I had asked if this would interfere with surgery and was told NO. So we spent the night before in patient hotel, got to ward at silly o’clock to be sent home as we were about to go to theatre. We have waited 6 months for this operation and we have rescheduled for October 5th as told them I was not willing to wait. Whilst we were talking to the doctors they started telling us about a couple of operations that may be an option for Megan. We will discuss these at length at our next outpatient’s appointment. They would like us to consider the ‘Mitrofonoff’ (surgery for bladder so Megan can catheterise through her tummy) and also the ‘ACE’ for her bowel. I know very little about either procedures and I will not look on the net as I know both surgeries are major and both have risks.

Megan will be seeing the Endocronoligists next Tuesday about early puberty. She is having a bone age scan done beforehand and hopefully we will then have some answers. Her body hair has grown even more over the summer and she insisted we buy her a bra. It’s so sad having to try and explain to a 7 year old why all these changes are happening to her body. She really is too young to understand but we are trying to be as honest as possible with her. If all the tests come back positive next week then we need to discuss how to stop early puberty before it affects her growth. We will also be seeing the Neurodisability team next week at GOSH. Megan is scheduled to have 3 Botox injections in each leg into different muscles to help with spasms next Tuesday. This will hopefully help with her tightness and maybe relax her a bit. We’re slightly concerned as they are being done without anaesthetic.

On November 1st we are being admitted to Stanmore hospital for intense Rehab. The spinal injury team have said that Megan must start being braced as the surgery/rod alone is not controlling the scoliosis. So we will be trying different braces, intense physio, trying new equipment and basically trying to make Megan more independent. It will be a very very tough week and I’m sure emotions will be running very high, but I do feel Megan will get a lot from it.

On the whole we have had a mad summer with so many appointments and things going on. Yesterday was Joe’s 10th birthday, I really can’t believe how time flies, thank you Wendy for his card. We had a little party at home with family and it was lovely to have good weather so we could get the bbq out. Joe and Megan are both back at school next Monday and we’re hoping for some good weeks now. It’s been a very tough few weeks with Megan and would be great for some time out. She’s really struggling with things at the minute, it is so hard.

Thank you for your continued support, it really means so much.

Thank you to Wendy for the handmade cards you continue to send Joe and Megan. They really look forward to receiving them and Joe even recognises your handwriting on the envelope now! Megan loved receiving the letter and photos from the Dalmatians. She is soooooo looking forward to receiving her very own puppy to look after. Joe and Megan still love hearing what Percy the poodle has been getting up to as well. A huge thank you for the box Megan received with the summer theme, she took this on holiday with us.

Update 4th July 2010

Sorry I missed last months update, we have had so much on. Megan has recently seen the long term oncology consultant. This is the first time she has been seen at this clinic. Everyone is fairly concerned as Megan is showing signs of early puberty. She has been referred to an Endocrinologist and will need some tests done. If the tests come back positive then they need to stop it ASAP. We have an appointment for September 7th. We’ve had loads of other follow up appointments but nothing to report really.

Megan has recently started wheelchair dancing and loves it. We also have a whizz kid course coming up so it’s busy. We are also going to Blackpool for a few days at the end of the month so that’s something to look forward to.

Thank you to everyone who continues to send posty to Joe and Megan. Megan has received lots of stickers and sticker books so she’s being kept very busy. Thank you to Ana for the lovely MEGAN name plate, she has put it on her wheelchair wheels. She loved reading about Ana and looking at the picture of Ana in her chair.

Update 1st May 2010

Wow it seems i missed last months update, SORRY folks. Megan had a great birthday and thank you for the lovely cards she received. She had a party with her friends in a hall with a disco etc. We ended up with about 50 kids and it was mad but Megan loved it although she spent over an hour crying about her wobbly tooth. Eventually it came out and she made £8.00!

Things have been a bit hit and miss lately. Since Megan’s recent spinal surgery she has been having problems with her bladder. It seems the surgery may have caused more damage to her bladder. She needs to have some tests done but they need doing under GA and there is a fairly long wait. She is very upset about all of this and we’re getting all the WHY questions. She’s feeling very angry and upset she had cancer, angry about being unable to do certain things. It’s heartbreaking to hear all this but I’m sure things will improve. She’s also been seen by a new specialist at GOSH about the spasms in her legs. They feel Megan will benefit from having some more Botox. She is on the waiting list which is about 4-6 months.

We’ve also just found out that Megan’s school is going to be fully adapted. Completion date will be Easter 2011 but will include a lift, hygiene room, ramps (basically everything that will make the school completely accessible). It’s a huge project as they’re also building new classrooms, ICT suite, playground, toilets. I finally feel that after 3 years of fighting the LEA, I’m finally getting somewhere.
Megan’s older sister Jenny got married at the beginning of April and she was very excited about being a bridesmaid. Joe was a pageboy and looked very handsome. We have also found out that Jenny is pregnant and due around November so they will be an uncle and auntie. We’re all really excited and feel we have something to look forward to.

Megan and Joe were so excited to see themselves on the TV on the Russell Howard Good News show. We have had so many people saying “we saw you on TV last night”. They have both had so much posty and mega smiles. Thank you to each and every one of you; if I forget anyone in the following list I’m really sorry. Right, here goes, David and Sandra, Karen Thatcher, Nicola, Charlie and Tilly the dog, Leah, Grannie Ruth, Elizabeth from New Jersey USA, Catherine Hill, David, Jen Steve and Lily, Wendy, Izzy, Charlotte, Yenti, Carole, Tanya, Anna and Jenny, Jacqueline, Phoebe, Claire Hastings, Dexter and his mummy, Liz. Also a big thank you to Emily and Fiona for the lovely box of girlie bits, Megan loves the hello kitty lip gloss and jewellery. Megan also received a huge box of bits from a lovely lady called Karen. Karen sent Megan a lovely card telling her all about herself and also that she is a policewoman. Megan loved the flashing bunny ears, wings, tiara and all the other bits and pieces. Again, if I have forgotten anyone I am truly sorry. You are all amazing people and have certainly created lots of smiles in my house this month. It has been a very tough month for Megan and from the bottom of our hearts, thank you.

Update 4th March 2010

We have had a very busy month including a few routine appointments with wheelchairs and local paediatrician. We’re still waiting for some hormone results to come through but it should be through any day now. Half term was fairly quiet as the weather was so lousy as usual.

On 23rd February, Megan was readmitted to GOSH for her spinal surgery. We were very lucky as she was first on the list so we didn’t have to wait around too much. She had her pre-med as usual and was very giggly. We saw a different anaesthetist who was new to GOSH and he was really lovely and let Megan be in complete control and make decisions about how she went to sleep etc. Surgery went well and she was sitting up in bed by the afternoon eating everything in site. She has never been like this before and it was lovely to see. I think we spoke to soon though as the next day was awful, she was very sick all day and the wound had been weeping over night. All in all it was a horrible day for us all and it just happened to be my birthday as well!

Megan has been recovering very well at home and had her dressings changed yesterday. All looks nice and dry and she was able to have a bath last night. I think she may have had the start of an infection as there was hard green puss under the steri- strips. Anyway, she’s doing well and returned to school this morning. We have to keep an eye on the wound as it was bleeding overnight.

On a brighter note, Megan is looking forward to her 7th birthday next Friday. We have a party booked for the 13th and she will be having a disco and face painter. We’re expecting about 50 kids so I’m sure it will be eventful.

Thank you for the continued support you all show to us. It really helps and shows how much people care. A huge thank you to Sara, Kelvin and Megs for the Chelsea stuff and DVD you sent through for Joe. Also a huge thank you for the Minnie Mouse hidden inside the red love heart – she loves it.

Update 25th February 2010

Megan had her spinal surgery on Tuesday and all went fairly well. She was in a lot of pain when she woke but it seemed to be managed with Morphine. Mick stayed with her Tuesday night as it was my birthday Wednesday. On Wednesday morning the wound had been weeping and she started being sick. She was sick a few times throughout the day and it looked doubtful we would get out. Anyway, we got out about 5pm last night. She had a fairly settled night but the wound seems to be weeping a little this morning. She’s slept a lot today and is a bit hot and looks very pale. We’re going to monitor how she goes and get the nurses to check the wound if it weeps again. We’re really hoping it doesn’t otherwise she’ll probably be back to hospital for IV antibiotics. She normally recovers really quickly but this time, bless, her she’s really struggling.

Update 31st January 2010

We were prepared for a busy month with appointments but unfortunately had to cancel them due to the snow. We managed to see the local paediatrician for a general catch up though. Megan had developed some body hair unusual for a little girl of her age. The paediatrician has taken a urine sample and they’re going to check some hormone levels. We should get the results in about 3 weeks. We’re also waiting for another appointment to see the movement specialist at GOSH. Megan’s leg spasticity has worsened and is making things very difficult and uncomfortable for her. She gets upset and wants to know why she isn’t ‘normal’. We try and explain things in a way she understands but how do you tell a 6 year old that cancer has done this to her body. We don’t understand why this happened to her, so how will she.

Megan will be going in for more spinal surgery on February 23rd. She is sitting very lopsided again and is uncomfortable so let’s hope they don’t cancel it again. Hopefully she will only be off school for a week this time. She is getting very upset about all the operations she has to have. She is questioning everything now and we are finding it really hard.

On a brighter note, Megan will be having her 7th birthday on March 12th. We have organised a party for her on the 13th – she will have a disco, face painter and loads of games. She wants to invite friends from school, family, and all her wheelchair friends. I think she has reached about 50 on her list now. This will be the first proper party she has ever had as she always seems to be recovering from surgery around her birthday.

Thank you for the continued support we receive from Post Pals. Joe and Megan save all their cards/letters they receive in special boxes and we all sit and look at them. Megan is also enjoying sending parcels to other Pals.

A huge thank you for the handmade cards that Wendy sends to Joe and Megan. Thank you to Gemma for the bits she sent and also for the packets that Post Pals sent through. Joe and Megan loved the Thornton’s chocolates.

Update 3rd January 2010

December has been a very busy month for us all. On 5th December Mick and I flew out to Lanzarote for a week. This was our first ever holiday alone in the 16 years of being together. We had an amazing time and Joe and Megan stayed with my mum and sister. Joe and Megan were so pleased to receive posty while they were there.

On December 17th we were lucky enough to go to the GOSH Christmas party. We have never been before and had a ball. They met lots of characters, ate loads of chocolate/sweets and played some games. They were also lucky enough to be given a Meerkat in their goody bag to take home. These were donated by Harrods and are exclusively made in honour of compare the Meerkat.

We have had an amazing Christmas which we spent at my mums. Megan got a pink stereo, Hannah Montana things, make up, handbag, mobile phone (not from me, I think she’s too young), clothes, games, littlest pet shop stuff and loads more. Joe got an IPod, star wars monopoly, cd’s, dvd’s, clothes, games, and loads more. We bought them a Nintendo Wii between them which they play nicely together. Ulterior motive, I would like the Wii fit to try and shift some more weight, so we will all benefit from it.

We have a lot of appointments coming up in January for Megan. Wheelchair services have supplied a new chair which seems to be going fairly well. We do however have to keep going back for things to be done. We’re seeing the local paediatrician, urodynamics, physio (we have a new one which isn’t going too well; we’ve only seen her twice in about 2-3 months). We are seeing the movement clinic at GOSH in January; this will be our first appointment with them so hopefully it will help. They deal with spasms, medication for spasticity, exercises etc. I feel we should have been referred ages ago as her spasms are really bad now. She is also being referred to a hormone specialist. She has developed excess body hair that is not normally found on a girl of her age. It could be early onset of puberty so we need to check things out now. Apparently it can be quite normal with spinal patients and although it causes no problems now, it will in later life. It’s just another hurdle for Megan to cross.

I want to say a huge thank you to all of Joe and Megan’s elves, reindeers and everyone that sent gifts, cards and letters. I won’t name you all personally otherwise we will be here forever and I really don’t want to miss anyone out by mistake. Each and every one of you makes a huge difference to our lives. I hope you all had a fantastic Christmas and I can’t wait until next year to do it all again.
Again, a massive thank you for all the cards that Megan, Joe, Mick and I, have received over the whole of December. Joe and Megan loved receiving their letters from the reindeers. In the first week before Christmas they were getting them daily and really enjoyed hearing what all the reindeer had been getting up to. A massive thanks to all of Joe and Megan’s Elves too. Megan received some arty crafty things, DS game, princess dressing up things, make up, hair bands, cd’s, tatty teddy, amongst some of them. Joe was so excited to receive the Guinness Book of Records and the JLS cd from Liz and Kate (one of his elves). We now know all the moves and words to the entire JLS album.

Update 2nd December 2009

Sorry for missing last months update. Megan is doing ok, we’ve had some appointments with the paediatrician and now we’re just waiting for a referral to a specialist that deals with spasticity. The appointment should be some time in January. We saw the spinal team and Megan had some more x-rays done, her scoliosis is still doing fairly well with the rods. She has grown so more surgery is scheduled for February 23rd, which is a day before my birthday, so I will wake up in a plastic sweaty chair on my birthday!

Joe and Megan are really excited that they will be going to stay with their Nan and Aunty for a week. Mick and I are having a week in Lanzarote, so they will be doing the school run. We haven’t had a holiday on our own in the 16 years we have been together so are looking forward to it. Because of Megan’s needs, my mum and sister are the only ones that ever offer to have her. They have their school nativity next week so we’re hearing all the songs 10 times over now. Megan’s also learning Spanish at school so we’re getting jingle bells in Spanish, morning, noon, and night.

We have also been called by the doctors for Megan to have her flu jab. I’m a little unsure if I want her to have it but don’t think I could forgive myself if she didn’t have it then got ill. This is booked for 15th December. I’m sure she won’t be very happy but we will be going to GOSH for their Christmas party on 17th December so hopefully this will cheer her up.

I want to say a huge thank you for cards and letters that Joe and Megan have received. We have also started getting letters/cards from Santa and the reindeer. Joe and Megan love hearing what Santa and his reindeer are doing in the build up to Christmas, they are so excited so thank you to all you elves and reindeer out there.

I hope everyone has a great Christmas and wish everyone great health for 2010. To everyone that send letters/cards/gifts to all the Pals, you make a huge difference to these kids and their families.

Update 8th October 2009

Megan has had a fairly good month, although has been in a lot of discomfort due to an ill fitting wheelchair. I’ve spent the last 6 months chasing wheelchair services. Anyway, to cut a very very very long story short, we finally have a new chair. We picked it up on Monday and Megan loves it. She has customised it with tatty teddy stickers and spokey dokeys on the wheels. Hopefully she will be a lot more active now she has a super duper lightweight chair.

We have had some adaptations done to the bathroom so hopefully Megan can begin to catheterise herself. She is still very upset about having to wear nappies as she is nearly 7 so it is a huge thing for her. We’re still getting all the questions about her disability and try to answer as honestly as possible. I’m sure it will get a lot harder as she gets older.

We’re still waiting for an appointment at Great Ormond Street with regards to her spasms, they seem to be getting worse and her hips are very tight now. We also have a new physio who doesn’t know Megan or her strengths/weaknesses so i feel like I’m banging my head against a brick wall.

Megan’s really pleased now she is back at school and in Year 3. She’s working really hard but enjoying it. On the other hand we have huge issues. Megan’s carer at school is amazing, they have a great bond and work really well together; however that’s where it ends. When Megan first started school everyone was very accommodating but now we seem to be a nuisance. She has to use a different entrance to all her friends as there is still no lift. We have been told that hopefully this should be done next year (we’ll see) by this point she will only have 3 years left at the school.

Thank you to everyone who continues to send posty.

Update 8th September 2009

We have had a really hectic summer and are now able to have a bit of peace now the children are back at school.

Megan has been having weekly hydrotherapy with her physio and is really gaining confidence now. We are going to aim to take her swimming once a week to keep this up.

We saw a Neurologist at GOSH to monitor the spasms she has in her legs. She didn’t receive the Botox when she had her spinal surgery and it has made a huge difference. Her legs are tight in the hips and they keep jumping about. She’s a little upset by this as it affects her balance etc. Anyway, she has been referred to another consultant that deals purely with spasticity so hopefully we won’t have to wait too long for the appointment.

We’ve also learnt that the damage in her spine (caused by the tumour) is actually from T7-T12, not T8-T10 as we previously thought. It has only taken 6 years to be told after constant asking. She definitely has no feeling from her belly button down and will never walk. We always knew this but the harsh reality has set in after it being confirmed.

We’re still waiting to hear about Megan’s new wheelchair. Funnily enough they always say they will call you with an update and we never hear another thing. She’s so big in her old chair now and it is holding her back and she’s unable to do things she had learnt previously. It is always a constant battle.

On the whole we had a great summer. My sister got Megan a bunny for an early Christmas present. First she was called Martha but now it’s Rose. She’s very pretty with tall ears. Unfortunately, Megan managed to let Joe’s boy bunny get in her cage so now we have to wait and see if one new bunny will in fact be a lot more, so watch this space!

Thank you to everyone who continues to support us and send Joe and Megan posty. It really does make a huge difference and we’re so happy to be able to share our lives with you. Thank you to Jane for the lovely postcards from Lanzarote, Joe and Megan loved reading about your holiday. Megan loved the pink sheep that Sarah sent her so a huge thank you. Megan’s favourite colour is pink and now he goes to bed with her every night. Thank you to Post Pals for the Egyptian set you sent Joe, he has been learning about Egypt at school and is really looking forward to doing it.

Update 4th August 2009

Sorry for not updating last month, we found out that Megan was going in for spinal surgery and only had a week to sort ourselves out.

Surgery went very well and we were home within 48 hours. We had a different surgeon this time and I have to admit I was a bit wary. However, he was amazing, his bedside manner was great. We have never had a surgeon come and see us after surgery and explain things. We will be going back in 6 months for a review and surgery will probably 9 months time. She was back at school after 2 weeks and has healed well.

Joe and Megan have broken up for the summer now. We have just come back from New Milton with the Thomas Ball charity. We stayed at their lodge and had an amazing time. We didn’t have the best weather but we were really busy. We managed one day on the beach in Swanage which was lovely.

Megan has been referred to the Neurologist at GOSH and we have an appointment in September. There is no-one in Megan’s care deciding when Megan should have Botox in her legs. She hasn’t managed to have it this time and her legs are very stiff and she’s having lots of spasms and the Botox normally helps. We have various other appointments during the next 2 months, wheelchair services is our biggest thing at the moment. Megan is definitely too big for her wheelchair now and were having problems trying to get a new one. Wheelchair services are teaming up with Whizz Kidz and are hoping to do split funding to get Megan the best chair available. I’m so pleased Whizz Kidz will be involved but everything takes so long. Megan has lost a lot of confidence in her chair as she doesn’t feel safe now. We have an appointment on August 11th to try 3 different chairs to see which is best for her; it is just how long they take to order and supply. Next week Megan will be doing a weeks wheelchair skills course run by Whizz Kidz. She is very excited about this as she did one last year and learnt lots of new things.

Well, there are 5 weeks left until Megan starts in Yr 2 and Joe goes into Yr 5. Joe will be celebrating his 9th birthday on August 31st. I can’t believe they grow so much.

Thank you for all the cards, gifts and letters that Megan and Joe have received this month. Thank you to the lady that sent Megan the fairy holder as she loves it. Megan’s Post Pals box is now bulging and we have had to get another one for all her letters etc. I can’t wait until she is older and we can sit together and read them again.

Post Pals you do an amazing job, I can’t imagine not having you in our lives, especially when times are really tough. Thank you.

Update 28th June 2009

Megan is going in for more spinal surgery on June 30th. We have been given very little notice this time which is a pain when trying to organise childcare for Joe.

I hope she will be well enough for the Post Pals party.

Update 4th June 2009

Megan has had a fairly unsettled month. We’ve had a few hospital appointments with the local paediatrician and they have all gone ok. Megan’s legs have started to spasm a lot more in recent weeks. We spoke to the doctor about her having some more botox when she has her next spinal surgery in July. We are doing lots of excercises and stretches but the tightness is getting worse. We have had to have an emergency appointment with wheelchair services as Megan is now far too big for her wheelchair. She fell out of the chair twice in a week and hurt her arm. We have had to borrow a wheelchair until we go for an assesment for a new one on June 10th. I hate the borrowed chair but hopefully it’s only short term.

We’ve had a lousy half term. Joe and Megan broke up on the Friday and by the Sunday we were in A+E with Megan. She was very unwell and had a very high temperature. She appeared to have all the signs of scarlet fever, she had this when she was 3. Anyway, long story short, Megan had picked up scarlet fever for a second time. Our week was spent with the tv and antibiotics. We had a day at Littlehampton after 5 days which we all enjoyed.

Megan’s nan has been in and out of hospital for the last 11 weeks with kidney stones, diverticular disease and eventually caught C-DIFF. Anyway, things have been tough but hopefully she is now on the road to recovery. It has been a long 11 weeks.

Thank you for all the lovely letters/cards that Joe and Megan continue to receive, i really wish you could see their faces light up when the postman comes. A huge thank you for the bubbles that Megan received. She loves bubbles and had great fun with them.

Update 1st May 2009

Sorry for not doing an update last month. Megan’s Nanny is very poorly in hospital and we just haven’t had time. She’s still in hospital after nearly 7 weeks, but hopefully will improve soon.
Megan has had a few good weeks, enjoying the sun and has loved being able to go outside. She’s working hard at school and has so many friends who seem to look out for her. Wheelchair services have given her a new cushion for the chair as her pelvis is not in line with her trunk. This has been an ongoing problem that has gradually got worse. The cushion has helped a little but also caused a few problems as her chair is no longer able to fit under the desk at school so she is straining her neck. No one realised this was happening until she was having pain in her neck every day and needed to have pain relief. The school has ordered a height adjustable table so hopefully this should help. To be honest i think she needs a new wheelchair; she’s had the same size chair since she was 2 and is beginning to look a bit big for it. We have an appointment with the wheelchair services next week so I’m going to push for something new.

We have an appointment coming up at Stanmore spinal unit this month for review. The OT’s and Physios are fantastic there and are so helpful with regards to equipment, exercises etc. Megan also has an appointment with her Oncologist at the beginning of June. She will have an Echo of her heart first and then get the results from the Oncologist. One of the chemos that she was on can cause heart problems but hopefully these should all be fine.

Megan has started playing Boccia after school on a Monday. She really enjoys it and it gives her a chance to be with other children in wheelchairs.

We still have issues with Megan wanting to wear knickers and not nappies and we deal with this on a daily basis and are hoping she feels more comfortable with the situation soon. She is becoming such a little madam and fiercely independent, which we encourage, but again it brings out more issues with things she can’t do. I’m sure things will improve but no doubt it will get worse before it gets better.

Joe is feeling a little more positive about things; we’ve really tried to make more time for him without Megan. It’s tough and not always possible but again we will get there.

Thank you to everyone that has sent posty to Joe and Megan, it really does go a long way to create two smiling faces. Even the postman knows all about Post Pals now! Huge thank you to Percy the poodle for happy post as Joe and Megan love hearing what antics he’s been up to. We’re also in the middle of growing our eggs that we received about a week ago, thank you Post Pals. Joe and Megan are having a competition to see whose the best is. We will send a photo when there all done. Megan loved receiving the Beatrix Potter cards too and she’s in the process of writing some notes.

I also want to add a huge thank you to Viks and her parents for coming to see us on Megan’s birthday. Megan was a little down and we were having some tough times. Viks arrived at the house with some balloons for Joe and Megan and a Nintendo DS game for Megan. It was so lovely to see her and her parents and it really meant so much to us. Thank you so much Viks.

Update 9th March 2009

Well what a month. Megan is pretty much recovered from her spinal surgery now. On the whole it’s been a quiet month regarding appointments for a change.

We have a few issues at the moment with both Joe and Megan. Megan is very upset she can’t walk and doesn’t understand. She is also fed up of going in for surgery every 6 months now. The biggest upset at the moment is the fact she’s still wearing nappies. She can’t understand why her friends are wearing pretty knickers and she is still wearing nappies. We have bought her some pretty knickers to go over the nappy but that’s not good enough. I’m going to phone Stanmore and ask the psychologist to see her as they deal with this on a daily basis. Joe is also sad that Megan can’t walk and run and do the things he can. He feels he is missing out on a lot because Megan can’t do certain things. We try so hard for him not to feel left out but it’s so difficult to find someone to come and sit with Megan while we take Joe out. We get 2 hours a week from social services but to be honest it’s sometimes more of a hindrance as 2 hours isn’t really long enough to do anything. So we’re having issues with both Joe and Megan but hopefully they will be sorted out soon.

On the plus side, Megan is celebrating her 6th birthday on 12th March. This is a huge milestone and something we never thought we would see. I didn’t for one minute think we would be sitting celebrating her 6th birthday with her by our sides. And on the plus side again, Megan has been off Chemo for 5 years now. We have a lot to celebrate this month.

Thank you again to all who continue to send happy post – it does just that. A huge thank you to Julia from Austria for the packet you sent Megan. She loves the stickers. Also a very big thank you to Kim for the bits she sent through. Thank you to Post Pals for their continued support. Megan is cancer free for now but still has all her other problems as a result of Neuroblastoma, so thank you to everyone at Post Pals for making life happier for Joe and Megan.

Update 1st February 2009

We’ve had a fairly quite month up until last week. Megan had spinal surgery to lengthen her spinal rods last Tuesday. We went for pre-op on the Monday and Megan was in good spirits, until they said they wanted to do blood tests. Anyway, long story short, why did they want bloods as they never have before? We spoke to the doctor who agreed it would be best for Megan’s bloods to be done while she was asleep in theatre. Tuesday morning we arrived at Dinosour ward and basically just had to wait. She was second on the list and didn’t actually go down until about 11am. Once again she amazed me at how calm she was. She had her pre-med (which she took herself) then laid on the bed while we waited for it to take effect. By the time the porter arrived she was being very silly and waving at everyone like she was the queen. She didn’t cry at all when she was having her anaesthetic and drifted off to sleep very calm.

Surgery lasted about 2 1/2 hours and she definitely wasn’t calm when we got to recovery. The nurses gave her some Morphine on top of everything else she had and after a while she was comfortable and we went back to the ward. She slept on and off until about 6.30 the following morning, so had a good rest. Everything seemed to have gone well and we were allowed home later that day. Her pain has been a lot worse this time but today she seems to be a lot better. We have the nurses coming on Monday to remove the dressing and check the wound, something that Megan will scream at. The doctors have told us that she must have 2 weeks off school to fully recover, so she’ll back for a week before its half term.

So that’s it surgery wise for 6 months. We have various appointments over the next few weeks though, so a busy time coming up.

Thank you for the cards/letters that Megan has received. She really enjoyed getting the letter from Percy the Poodle and hearing all about his antics. A huge thank you to the lady that sent Joe and Megan the glo sticks too as they both had a lot of fun with these during the night.

Update 22nd January 2009

Megan is going into GOSH on Monday 26th January for her spinal operation. Hopefully we will only be in for a few days, depending on how things go. She’s aware she’s going in but is fairly anxious this time. It seems to get harder as she gets older, maybe she’s a lot more knowing.

Joe and Megan were sooooooooooo excited to see themselves on telly last week, Megan got a bit embarrassed. A lot of the mums at the school have asked about Post Pals so hopefully some more post will be sent.

Update 4th January 2009

Joe and Megan had a fantastic Christmas and were spoilt rotten. Santa bought Joe an electric guitar and Megan a keyboard, so our house was very noisy on Christmas day. We stayed at home and had my mum and sister and Mick’s mum over for dinner. Megan got a lovely Disney princess night light which has been used every day since she received it. She has now decided she wants a Disney princess bedroom, so I’m going to get pink paint tomorrow. Joe has also decided that he would like a Chelsea FC bedroom so we’re going to be very busy.

Unfortunately Megan wasn’t well before Christmas; she had this fluey/sicky bug that was going around. After 2 weeks i took her to the GP who prescribed antibiotics and after a week or so she was a lot better. Joe has had a terrible cough so we may have to take him to the doctors next week.

Megan is due for more spinal surgery later this month; I’m still waiting for a date. She is sitting very twisted again and is experiencing some pain to her back. I’m going to phone Great Ormond Street again tomorrow and try to find out when we’re in. I don’t think these doctors realise we have our lives to lead as well as be at their beck and call. I need to sort out childcare for Joe when Megan’s admitted.
Well, tomorrow it’s back to school, yay! Megan really hates being away from school and is so excited to be going back. Because she was ill before Christmas, she missed the last week. We sent her in on the last day just so she could see her friends and her carer. It’s been 3 years running that she has missed all the Christmas celebrations at school, so I’m keeping my fingers crossed for this year!
We have a few appointments coming up with the local paediatrician, wheelchair services, and Megan’s counsellor, so i will let you know how we get on in my next update.

A huge thank you to Joe and Megan’s Christmas elves. They received some lovely presents, Joe got a Scooby Doo game, Dr Who tardis kit, Harry Potter goodies, sweets, and Dr Who stuff. Megan got loads of Disney princess stuff, night light, make up, sweets, crafty sets. The list goes on and on and a heartfelt thank you to everyone that sent post. Also, a huge thank you to Percy the Poodle that sent a parcel for each of them. I can’t remember everyone’s names personally, so I’m saying thank you to everyone in case i forget anyone.

We hope you all had a good Christmas and happy New Year to you all.

Update 10th November 2008

Megan has had a busy month. Half term week was spent on a wheelchair skills course run through Wizz kids. Megan enjoyed the week and it really taught her a lot as well as me. She has great skills and is now practising her back wheel balance. We need to aim for her to balance for 1 minute and then get up to 5 minutes and then do it with one hand.

Megan is being admitted to Stanmore hospital soon for some intense physio and to possibly try a different type of back brace. I’m not sure how Megan will cope but we are willing to try anything. She is due for more spinal surgery in January so we have a bit of a rest.

Joe and Megan are really looking forward to Christmas and Santa has a huge list. Joe would like an electric guitar and Megan a keyboard, so it’ll be a noisy house if Santa obliges! We’re going to see Santa on December 13th and they are both so excited (so am i but wouldn’t admit it to the kids)!

A huge thank you to everyone that has sent Joe and Megan posty, they still wait for the postman everyday with a huge smile. Also a massive thank you to Hayley Gardner for the wonderful gifts she sent to Joe and Megan last week. Hayley is a relative of Samantha and Louis Hughes, she said she knew how much it meant to them to receive posty and wanted to send gifts to some children battling Neuroblastoma. It really means a lot that they are still wanting to make kids smile after there loss, so thank you.

Update 13th September 2008

Megan is recovering well from her surgery in July. We have a bit of concern about the stitch at the top of the spine though. It doesn’t seem to be dissolving so we need to keep tabs that it doesn’t turn nasty. It’s beginning to look a little red so here we go again.

Megan is now doing intense physio as her hips are quite tight. She had botox in her hips and this seems to be keeping things stable. We will see the spinal team at Stanmore on October 3rd to discuss the next steps. We also see the uro-dynamics team on the 6th October to do some bladder investigations, and we have an appointment with the eye specialist in November, so we have a very busy few months.
Joe and Megan are now back at school and seem to be enjoying their new teachers. Now Joe is in year 4 he has a lot more work to complete – much to his disgust.

Thank you to everyone that sent Joe cards on his birthday and Percy the poodle for his lovely present. I also want to say a huge thank you to everyone that continues to send posty to Joe and Megan. Many of you have been through a lot with us and you’re all still here making Joe and Megan’s day a little more special.

Update 23rd July 2008

Megan has had a very busy month. School is going really well and her report shows she is in the top of her class. Her biggest strength is Maths and this must come from dad as it is definitely not from me!

Joe and Megan broke up a week early for the summer holidays as we went on holiday. We went to The Thomas Ball lodge in New Milton. Thomas Ball lost his battle with Neuroblastoma when he was 14 and the charity was set up in his name. I think it was probably the best holiday we have had. This is our 3rd summer we have been there and will be going there next year. We have got to know the entertainment team who are fantastic. They treat Megan as an equal and include her in everything. Sammy seahorse is the mascot and Joe and Megan enjoyed singing and dancing with him every night.
Megan was due to go in for more spinal surgery on 25th July but unfortunately this was cancelled by email (i was livid they cancelled by email and not a call). Anyway, she will now be going in on 28th July for surgery in the afternoon. We are all a little anxious as usual about surgery. We have explained she is having another op and she seems ok. Her true colours will show when we are at the hospital. As well as having the rods lengthened, the surgeon is going to inject some botox into her hip muscles. Megan has been having lots of spasms which are beginning to be uncomfortable. Originally they were going to snip the tendons but we’re going to try the botox first. She has a new piece of equipment which was supplied by Georgies fund. It’s a ‚Äòwheelabout’ which means she can be strapped in a standing position but still be able to wheel herself about. This will be very beneficial for her muscle tone in her legs and give her a lot more independence. I can’t thank Georgies fund enough for their generosity in this wonderful gift.

Joe will be celebrating his 8th birthday next month. He’s very into Star Wars now and wants to collect the Lego Star Wars kits. He’s given me a huge list for his birthday. He seems to have grown up so quickly. I’m sure that due to Megan’s disability and illness he has had to grow up quickly, but i have to say he is not resentful at all and very overprotective of Megan.

We were lucky enough to attend the Post Pals party and it was great to meet everyone. It was also great to meet some of the other pals and their families. Joe and Megan thoroughly enjoyed themselves and came home with loads of raffle prizes. I just want to say a huge thank you to Post Pals for everything you do. Joe and Megan run to the door everyday looking for their post, and it’s strictly off limits to me. You spend so much of your time doing things for the pals and their families and it’s wonderful. You are a huge part of all our lives and we thank you for everything.

I will update as soon as Megan has had her surgery. Please think of her as she goes through this again.

Megan has received lots of letters this month. Most of them are from a primary school in Brighton and a primary school in Somerset. Megan has loved receiving these letters and hearing about all the children that have been writing to her. Thank you to you all.

Update 7th June 2008

Megan had her MRI at GOH last Tuesday and we went for the results Thursday 5th June. Megan’s oncologist is very happy with Megan and how she is doing. Megan has been off treatment for just over 4 years and the scan shows that the tumour has not grown or changed shape. We should have been moved to long term follow up but the oncologist isn’t ready to let Megan go yet, she definitely has a soft spot for her. So we will see her next time and then be moved on. Megan has to have some kidney scans and an echo done, but remains fairly well with regards to the Neuroblastoma.
Spinal rods are and will always be an ongoing issue. We are back for more surgery to lengthen the rods on July 25th and she may also need to have an operation to cut the tendons in her hips. Her hips are so tight and we are doing lots of exercises to help this but they don’t seem to be working. We’re praying that if she needs this op then it can be done at the same time as the spinal rods are dealt with. The next piece of good news is Megan has some new equipment which should help the problem with the hips. Georgie’s fund have very kindly bought her a wheelabout, which is a sort of standing frame with big wheels so she can move about in a standing position. I can never thank Tania and the girls at Georgie’s fund for their generosity in this wonderful gift. Megan has taken to it like a duck to water and enjoys going in it. Life with Megan’s disability seems to get more difficult as she gets older but hopefully this will help a little.

She’s doing great at school although we still have issues with adaptations, hopefully this will nearly be sorted when we go back in September when she will be in year 1.

I’d like to say thank you to a little girl called Ellie who lives in Suffolk. Some time ago Megan received a lovely parcel of bits and a lovely letter from Ellie and her family. Megan drew a lovely thank you picture for Ellie and her little sister Beth, which i was meant to post. Unfortunately i lost the address and my computer crashed and i lost all my email addresses so couldn’t mail to ask for there address. If you see this please email me through the link at the top of Megan’s page so i can forward Megan’s picture.

Update 16th April 2008

Megan has had a very busy month. She celebrated her 5th birthday on March 12th, a day we never thought we would see. We had a party for her on the Sunday with family. We got her a pink fairy castle cake which she loved. As usual she was spoilt rotten and couldn’t have asked for more. She received some lovely presents via post pals and loads of stickers. Megan can never have too many stickers; the wheels on her wheelchair are full of princess ones.

We have had appointments with wheelchair services to try and find some suitable support for her chair that doesn’t restrict her movement too much. On Friday we will be going back to have a cast done of her back and make some sort of plastic support. We have an appointment at Stanmore Royal National Orthopaedic Hospital to see the spinal injuries consultant. We go there every 6 months and they’re excellent. We have also seen a rep about getting Megan a wheelabout, which is a sort of standing up wheelchair that she can self propel. We’ve tried 2 different ones and she took to it straight away. This would give her more independence and enable her to access so much more. We’re hoping to get some kind of charity funding, i won’t say too much in case it doesn’t work out, but will update you when i know more.

We’ve had a busy month with physio sessions etc as usual. Megan has her next MRI and appointment with the oncologist in May, so fingers crossed the tumour hasn’t changes size or shape.
A big thank you to Maria Carney for the lovely things sent for Megan’s birthday. Also a huge thank you to Sally, Owen, Beth and Ellie. They sent Megan some lovely bits for her birthday and a letter from Ellie. Ellie is the same age as Megan and they sent some pictures too. Megan is going to send Ellie a lovely picture to say thank you. The picture of Ellie and her little sister Beth is in Megan’s photo album. This really put a smile on Megan’s face.

I can’t praise Post Pals enough. Since Megan’s problems all began as a result of Neuroblastoma, post pals have been great. They have supported us through lots of hospital admissions and operations. Joe always feels a little left out as Megan’s needs always have to be a priority. When posty arrives for him his smile is priceless. He spends a lot of time away from home and we miss him dreadfully. He loves receiving cards and letters etc when Megan’s having treatment or surgery. Thank you for making this possible.

Update 4th March 2008

Megan has had a fairly good month health wise. The infection in her back is healing well although there is still one patch that’s a bit puffy. The spasms in Megan’s legs are quite bad now; i need to make an appointment to review her medication. We have to strap her feet down in the chair so that one of them doesn’t get trapped in the wheels. She’s been recast for her night splints so hopefully this will help a little. We have an appointment with a rep to show us some new equipment that should help Megan. We are looking at a wheelabout which is a bit like a wheelchair but she would be standing. We will also try a few other things to see which suits her best. We have a date for her next operation – July 25th. Thankfully it’s the school holidays so she won’t miss any school. We are going to New Milton on 12th July so at least she gets a holiday before having MORE surgery.

Megan is doing great at school and has lots of friends. Her carer has been sick for the last 2 days so the school has had to muddle through on their own. We’re still going up to do the catheter, but the teacher goes on the training course next week, so hopefully we won’t need to go for much longer.

Next Wednesday will be Megan’s 5th birthday. I can’t believe where the time goes. Another milestone in her life. Doctors said she wouldn’t be here and look how well she’s doing!
Thanks for posty that is still being sent to Megan and Joe. Megan wheels herself to the door everyday to see if there’s anything for her.

Update 29th January 2008

Megan is doing ok. Following her spinal surgery in December, Megan caught an infection in her wound. She was put on a strong course of antibiotics and now seems fine. We saw the spinal team at GOSH on Friday and they are happy with her progress. She can now start her physio properly again. She has been unable to do so much as she has been unwell but all systems are go now. We have a date for her next lengthening in July. We are away 12th July for a week and then she goes in for surgery July 25th. I’m glad as this means it will be done in the summer holidays so she won’t miss school.

Megan is doing great at school and has loads of friends. It’s tough without all the adaptations but we’ll get there eventually. We go back to GOSH for an MRI in May and to see the oncologist.

Thanks for the posty that you continue to send to Joe and Megan, it really helps to brighten their lives. A big thank you for the lovely drawing books and pens/pencils sent to Megan. She loves them.

Update 3rd January 2008

Megan had a tough month in December. She went in to have her spinal rods lengthened and an x-ray showed the rods had snapped. I phoned the surgeon and said i think the rods have snapped, of course they answered me as if i knew nothing. Anyway they phoned me back and said well spotted, they’ve snapped. She went in to have the old rods removed and a new one put in. The newer rods are a lot more heavy duty and hopefully will be ok for a few years at least. We asked if we’d done anything wrong and they said it just happens sometimes, Megan is just very unlucky. Her recovery was a lot slower this time and she was in a lot of pain. We were told that surgery will be worse as she gets older. Megan is now fed up with all her surgery and hospital appointments. She also wants to know why everything has happened to her. I’m unsure how to answer her, so she is having some counselling at school. Alison is really helping her through things. Unfortunately Megan is always going to be in hospital having procedures done.

I want to wish everyone a happy new year and thank you to everyone that continues to put a smile on Joe and Megan’s face. Post Pals has made such a difference to Joe and Megan’s lives. Everyday after school, the first thing they ask me is “have we got any post today mum?”.

A huge thank you to Joe and Megan’s Christmas elves this year. They were thrilled with their gifts. Megan was in hospital just before Christmas for spinal surgery, so all the cards and gifts really cheered her up at a tough time.

Update 9th December 2007

We went to GOSH on Tuesday to have the pre-op x-rays ready for surgery on Wednesday. Unfortunately, Megan’s x-rays showed that the spinal rod had snapped. Only a 6% chance of this happening, but yes, my girl did it.

Anyway, she has had to have a new rod put in so has been cut from her neck down to bottom. She is in a lot of pain and recovery is very slow this time. I can’t believe this has happened just before Christmas, not sure how long we will be in for. Hopefully out by the end of next week.

A huge thank you for the cards and presents that Megan has received. They really have helped her to smile these past few days, although i have to say she’s probably only managed 1 smile. Also a huge thank you for the parcels that Joe received. He got 2 boxes with Dr who and Power rangers, he loved them. When we’re out of hospital i will forward the photos i have taken.

Thanks again, you really are doing a great job. Not only for the sick kids but their siblings. Joe has felt left out this week and been craving attention so posty really helps him.

Update 30th November 2007

Megan has had a few bad weeks. Her scoliosis has progressed and is causing her pain. We saw the spinal team who did an emergency CT scan as they thought the rod at the top of the spine may have dislodged. The scan shows the rod has indeed dislodged but there is now concern that the screw at the top has come out causing her the discomfort. Anyway, this will be sorted next week as we go into GOSH on Wednesday for more spinal surgery. Hopefully things will improve after this. We will be in hospital for about a week; I’m dreading it and find it difficult to see Megan in such pain.

On a better note, things are going great for Megan at school. We still don’t have all the adaptations in place yet, but we’re getting there. Megan is looking forward to all her Christmas activities so i just hope she will be well enough to be there.

A huge thank you to the lady that sent Megan the colouring book and pens/pencils. She has had loads of fun and i have lots of pictures on my fridge door now. Sorry i can’t name you in person, but Megan got excited and just ripped your details, sorry.

Well i want to wish you all a merry Christmas and hope you get everything you wish for. If anyone would like to send Megan any posty when she is in hospital please make it to: Megan H, c/o Sky ward, Great Ormond Street hospital, Great Ormond Street, London, WC1N 3JH. Thanks, love Beth xxx

Update 27th November 2007

Hope you’re all well. I just wanted to let you know that Megan will be going into GOSH next week for more spinal surgery. Firstly Mr Tucker will lengthen the rods and then they need to repair the dislodged screw at the top of her spine. The progression is very noticeable now and is causing her a great deal of discomfort. She is quite anxious about going back to hospital and really doesn’t want to go. I’ve tried explaining she will be fine but she remembers the pain she was in before. I know it’s going to get worse over the years rather than easier.

Update 30th October 2007

Megan has had a very busy month with school and appointments. Her scoliosis has got worse and she has been in a lot of pain. The rods have dislodged in the top of her back and she needs surgery to sort that as well as making them longer. So she will have a few extra days in hospital and surgery is booked for 5th December. Due to the pain in her back she has lost a lot of weight in the last 2 weeks as she has not been eating. Her appetite the last few days seems to have improved slightly; hopefully we can begin to get back to our school routine. Megan is really enjoying school and has her own care worker Jackie. Jackie and Megan have really hit it off over the last month, Megan really trusts her which is great.

Thanks for the letters/cards that Joe and Megan have received this month, they both still run to the postman to see what he has brought.

Update 30th August 2007

Megan is doing ok at the moment. She’s having increasing pain in her back and arm, indicating the need for more surgery. She isn’t sleeping as she can’t get comfortable or move herself in bed. We are seeing the spinal team on 10th September so i will discuss these issues with them.

Megan is due to start school on September 17th. This is a huge step for us all and something we never thought we would see. She is going to a mainstream school and will have full time support. I will update you all with how she does.

Joe celebrates his 7th birthday tomorrow; i can’t believe my baby is growing up.

Well until next time, thanks for the posty Joe and Megan receive. Huge thanks to SOLAK for the gorgeous quilt that was sent to Megan. She loves it and wants it with her all the time. They can’t wait to see the postman everyday to see if there is anything for them, so thank you to you all once again.

Update 6th August 2007

Joe and Megan broke up from school 1 week early as we were going to stay in The Thomas Ball lodge in New Milton. We had a fantastic time and a well needed break. Joe and Megan spent every evening dancing with Sammy seahorse and friends. This is the 3rd year we’ve been there and we hope to be going next year.

On July 7th it was my cousins wedding. Joe and Megan were to be pageboy and bridesmaid. The weather was lovely and the kids did a great job. Megan pushed herself down the aisle and all you could hear were the spokey dokies on her wheels going round. I have to say it was quite an emotional day seeing Megan; 4 years ago we were told she wouldn’t be here and look at her now.

Health wise Megan’s not doing badly. She has been getting some pain in her right shoulder again if she’s laid on it too long or used it too much. The local pediatrician started her on an epilepsy medication for neuropathic pain 6 months ago, and she’s been great. I’m wondering if the dose needs to be slightly increased, we see the pediatrician in a few weeks so i will discuss this with her. It is very visible now that Megan has grown since her surgery in May, we see the spinal team in September and should find out when the next surgery is, I’m sure it will be at Christmas.

Joe has got his first wobbly tooth; he discovered it last night and is very excited about how much the tooth fairy will leave him! It feels like he is really growing up now. Joe will be celebrating his 7th birthday on 31st August, thanks to everyone who takes the time to send something.

Update 4th June 2007

Megan’s surgery on May 9th went well. The surgeons managed to lengthen the rods by 2cm’s which is a great success. Following surgery Megan was in a lot of pain for a few days but she’s now back to her usual self and back to school. She will have to go in for more spinal surgery just before Christmas. Her latest MRI showed no evidence of disease which is fantastic, she will have another MRI in a year but we will go and see the oncologist in 6 months.

Things on the school front are improving. I have a meeting with the LEA today for a mediation meeting. The LEA have agreed to half fund a hygiene room at Joe’s school if the school pay the other. This shouldn’t be a problem and we’re just waiting for the rubber stamp of approval. So after fighting for 2 years, i think we have finally got there. I will let you all know.

Megan is looking forward to being a bridesmaid for my cousin Emily next month and we’re just sorting out hair and everything. Megan keeps telling everyone she is going to be a princess. Well until next time, thanks for sending Joe and Megan things through the post and I’m not sure who to thank but we received 4 parcels all from John Lewis when Megan was in hospital. Two gifts for Megan and one each for Joe and me. So whoever you are, thank you very much.

Update 1st May 2007

Megan is doing ok at the moment. We have had lots of appointments lately. Megan had her MRI scan done on 17th April, we saw the consultant for the results and they all came back clear. We will see her again in 6 months and then have 1 more MRI done in a year’s time. She feels the chance of relapse is quite small now, although never say never.

Megan goes in for more spinal surgery on May 9th. She has grown so much that she is quite curved again; she is definitely ready for the rods to be lengthened. Hopefully she will only be in hospital for 3-4 days.

We’re still fighting with the local council with regards to Megan’s reception class in September. We have still been refused a place at Joes school so i am going to a tribunal in June, fingers crossed.
Thanks for the cards Megan has received, it really does put a smile on her face. I will update when we get out the hospital.

Update 3rd February 2007

Megan saw the spinal team last Monday and she will be having an MRI of her neck done when she has the oncology checks done. Her pain is much better now, but she still complains from time to time. She will be having surgery again in May to lengthen the rods. Time goes so quick, were only just sorting out the problems from the last surgery.

On a better note Megan got her new chair. She is now a very independent little lady with attitude. I can’t believe how different she is since getting it. Well i suppose she is 4 in March. I still think of her as my baby. Anyway thanks again for all you do, you’re all great.

Update 11th January 2007

Results were good. There is no sign of active Neuroblastoma. The tumour will always remain there as it cant be removed. She will be scanned again in April and see how we go from there. We see the spinal team on Monday to discuss the pain issues.

Update 3rd January 2007

Unfortunately Megan was quite poorly in the lead up to Christmas. She was running an extremely high temperature and was generally unwell. We were admitted to Great Ormond Street. The spinal surgeons thought maybe her spinal rods were infected. She was scheduled for an MRI. The doctors started her on iv antibiotics and her temp started to come down and she felt a little better. The MRI showed no fluid or puss around the rods which is great. However they noticed that the tumour in her spine had grown a little. We had to see the oncologist to discuss things. They tested some urine for VMA which came back normal. This can be an indication of Neuroblastoma, although not always. Her oncologist doesn’t feel that the Neuroblastoma has flared up again but she ordered an MIBG scan to be done. This will tell us for sure if anything has returned. Her scan will be done on January 3rd, please keep everything crossed for us.

We managed to make it home for Christmas. They let us out Christmas Eve, the best Christmas present ever. We had a fantastic Christmas and the kids were spoilt rotten. Thank you to everyone that sent gifts for the kids. I’m sorry i can’t mention everyone but as we were in hospital my neighbours were getting my post and sorting it for me. Unfortunately some tags went astray. A huge thank you to everyone that sent gifts to Joe and Megan for Christmas though.  An extra special thank you to Megan’s Christmas elf Beanie. Megan loved receiving her big box of gifts. I wanted to thank you personally but mislaid your email address. Thank you to everyone that sent cards for Joe and Megan. They loved receiving cards from the reindeers and ran to the post every morning.

Wishing you all a very happy New Year and thank you for your continued support in keeping a smile on sick kids faces.

Update 28th December 2006

Megan was discharged from GOSH on Christmas Eve, so at least we managed to make it home for Christmas. She’s doing well at the moment although were still waiting for some scans to be done. We were told last Wednesday that Megan’s tumour in her spine has got bigger. The oncologists don’t seem too concerned at the moment, although were not quite as relaxed as they are. She is scheduled to have an MIBG scan on 4th January. Fingers crossed everything will be well.

As far as her being poorly goes they are still not sure what the problem was. Blood tests show that she has a severe infection somewhere but no-one seems to know where. The MRI showed no signs of fluid or puss to the spinal rods. They say that maybe she has a deep seeded infection. She went to theatre last week and had a pic line put in. She is very difficult to get a cannula in, and this has also made her terrified of doctors/nurses coming near her now. Anyway she is on oral antibiotics until January 15th, we will see the spinal team on that day and then she will have to remain on oral antibiotics for a further 3 months.

I want to thank you for your hard work over the last year. It has really put a great big smile on Megan’s face to receive posty, also Joe has been very lucky to receive a few bits. He has been unintentionally left out lately and this makes him feel like a special boy, so thanks again.

I will let you know when we have the MIBG results on 11th January. We’re praying for no Neuroblastoma cells to show up and will hopefully find out why the tumour is growing.

Update 30th November 2006

Megan is continuing to do well following her recent spinal surgery. We saw the surgeon on 24th November and they don’t want to see her until May, yey! We have had an ongoing battle with wheelchair services. She needs a new wheelchair and it cost over ¬£1000. Well a few hissy fits saying i couldn’t cope without a new chair seemed to help. Her new chair should arrive in 6-8 weeks. The council has refused to adapt Joe’s school ready for Megan to start there in September. It will cost over ¬£200,000 and i know it’s a lot but i feel it’s important for her to be with Joe and why should Joe move? I’m going to fight to the bitter end, and if need be take the local council to tribunal. I feel as if she’s being discriminated against because she has Neuroblastoma.

Well we’re all prepared for Christmas. I’ve nearly finished my shopping and the tree and decorations went up at the weekend. I know I’m early but Joe and Megan hassled me for hours. Megan is so excited this year; she’ll be 4 in March so knows more of what’s going on. She keeps telling me she wants Minnie Mouse and Cinderella for Christmas so she’s been quite easy to please. Joe just wants Dr Who, pj’s, pants, socks, so again Christmas is quite easy for me this year.

We have Megan’s next MRI scan on January 2nd, and results on 11th. Scan time is so hard especially as time goes on. We thought it would get easier but NO. Let’s just hope that nasty tumour is still not growing.

Well have a great Christmas one and all! Thank you to everyone who sends posty to Joe and Megan. Julie and Allan Barrett, Kate Dee, Laura and Chris for the doll, she loves it. A huge thank you to Megan R for her lovely gift to Megan. Megan loves receiving posty and really enjoyed the stamper and especially the Cinderella notebook and pen. She keeps telling everyone she has a diary now.

Update 31st October 2006

Megan is recovering really well following her spinal surgery. Her scar is healing really well and the stitches have nearly all dissolved. We will see the spinal surgeon for a follow up on November 24th. She will return to nursery on the 27th November all being well. We are trying to organize a new wheelchair for Megan, but of course the problem will be the funding. We’ve just received the letter regarding Megan’s next MRI scan. It has been booked for January 2nd; hopefully the hangover will be gone by then! 😉 We will get the results on 11th January. The longer she has been in the clear the slimmer the chances of it coming back.

Well we’re all looking forward to Christmas. Joe only wants Dr Who and Megan wants everything in sight. The year goes by so quickly; i can’t believe it’s nearly Christmas again. It will be the 2nd Christmas without my dad.

I want to say thanks to everyone that continues to send posty to Joe and Megan. I can’t remember everyone by name but you really make a difference to Joe and Megan.

Update 4th October 2006

Megan’s operation last week was cancelled. We were all prepared to go in and then with 24 hours to go they cancelled. No explanation – i was just told something came up. Anyway, Megan will be now going in to hospital tomorrow for surgery on Friday. We’re not looking forward to this operation, but she is in a lot of pain. Although initially she will be in a lot of pain, she should feel much better after.
Megan has now started at main stream nursery. She is really enjoying it, although the nursery have realised how much extra support is needed. We are now trying to start the statutory statement to get her extra support at school. Her teachers are really supportive to all her needs.

Our trip to EuroDisney was great. We can’t thank the children’s magical mystery tour enough. This organisation has been taking sick kids to EuroDisney for 13 years now. It’s quite an experience to see over 100 black cabs, police bikes, ambulances, AA and convoy vehicles all following each other down the motorway. The police bikes were stopping everyone at red lights and the motorway junctions so the convoy wasn’t broken. It was a very breathtaking experience. We all had a great time but were very tired when we came home. Our cab driver Mick stayed with us for the whole trip and helped us around the park.

Megan and Joe would like to say a big thank you to everyone that has sent posty this month. Big thanks to Kate Dee and Julie and Alan Barrett. I can’t thank everyone but you know who you are.

Update 12th August 2006

We just wanted to let you know that Megan will be having spinal surgery on Friday 29th September. We will be admitted on 28th. She will be in hospital for about 7-10 days. This will be 3 years to the day since she was diagnosed with Neuroblastoma. We are of course anxious about this but know it needs to be done.

Update 27th July 2006

Megan is having quite a lot of pain at the moment with her spine. I’m sure this hot weather doesn’t help. She’s taking more codeine to try and ease the pain. We go for pre-op on August 11th, so we should know when she will be having surgery. Although I’m 100% that it will be September.

We have just returned from New Milton where we spent a week at the Thomas Ball holiday chalet. We had a great time and Joe and Megan enjoyed singing and dancing with Sammy Seahorse.
Megan will be starting nursery in September. We’re still battling to find a suitable school for reception next year. Why can’t people see past the wheelchair and realise that Megan is a normal little girl? Things are very stressed at the moment.

Well i hope everyone is having a good summer. Joe will be celebrating his 6th birthday on August 31st. We’re going to try and make it really special after last year. My dad’s funeral was the day before so we didn’t feel like celebrating, so we must make it special this year.

A big thank you once again to Julie and Alan Barratt. Joe and Megan really look forward to racing for the postman.

Update 28th June 2006

Megan is doing ok at the moment. She is still having trouble with the back pain, due to the scoliosis. She will have her pre-op appointment in August, then all systems go for surgery in September. I’m dreading this but it needs to be done.

We’ve just been reviewed by the uro-dynamics team. Megan is still wet in between catheters, so they have decided to increase her medication and given her bigger catheters. If the medicine doesn’t work then we will have to increase the catheters to every 3 hours.

Nothing else on the health front really. I’m battling with the education department at the moment to find suitable schooling. I didn’t realise how stressful this would be. Every school mentions inclusion, but that’s as far as it goes. I will keep you all updated.

We’re going on holiday on the 8th July. We’re staying in New Milton at the Thomas Ball Charity holiday home. We are looking forward to getting away, and its lovely there.

Thank you to everyone who continues to send posty to Joe and Megan, they get very excited when the postman arrives. A big thank you to Julie Barrett, who continues to send lovely little things for Megan.

Update 19th May 2006

Just to let you all know that Megan’s scans have come back all clear. There is no sign of any disease. A great weight has been lifted. She will have another scan in November.

Update 15th May 2006

Megan is doing great at the moment, although she seems to be having a lot of pain due to the scoliosis. We have seen the GP and he has written to the surgeon regarding her surgery. The local paediatrician has also prescribed some Codeine for the pain. Hopefully this will help.

Megan had her MRI scans last week to check that the cancer hasn’t returned. We will get the results on May 18th. The catheterisation is working well and Megan doesn’t seem bothered by it at all.

On a great note Megan has been asked to go on the magical taxi tour. This is where 100 black cabs take sick kids and their families on a magical tour. We will be going to Euro Disney on September 15th. This is a massive event that gets a lot of publicity worldwide. Last year the cabs were in a convoy on the motorway for 3 miles. I’m sure it makes great viewing and it is something for us all to look forward to.

Megan’s lift will be fitted this week; this will make life so much easier for me and Mick, and give Megan a lot more independence. She needs to be doing things on her own as she does get very frustrated having to rely on everyone else.

Anyway until next time i want to say a continued thank you to everyone who sends posty to Joe and Megan, it really makes their day. I would like also like to say a great big thank you to Julie Barrett. She sends some lovely posty to Joe and Megan; also her parents sent a lovely huge doll to Megan. She has named her Emily and insists on taking her to bed with her every night.

Update 22nd March 2006

Just wanted to let you know how Megan’s is doing. We now have to catheterize her. We have spent 2 days at Great Ormond Street for training. At first Megan wasn’t too keen, but she has adapted really well to her new routine.

She will be having her spinal surgery in September. Her spine has now progressed to 60 degree. The surgeon wants to insert some spinal growth rods. She will then have to have the rods lengthened every 6-12 months as she grows. She will then have her spine fused when she is a teenager. I’m not looking forward to this but it has to be done.

I want to say a big thank you to everyone that sent gifts and cards for Megan’s birthday. I must admit i have lost count of the number of cards she received.  I would also like to say thank you to everyone that sent a little something for Joe.  It meant a lot to him while Megan was being spoilt rotten.  She had a great day with loads of pressies and a small party for family. Look forward to updating you all soon.

Update 4th March 2006

Megan is doing well at the moment. She had a review at Stanmore earlier this month. They seem pleased with her progress. They did talk about botox injections in her ankles because she has lots of spasms.

Megan was seen at Great Ormond Street yesterday by the spinal surgeon. Her 40 degree scoliosis has now progressed to 60 degree’s in just 6 months. He has decided he wants to get her in for surgery. They want to put in spinal growth rods that will grow with her. This means she will need surgery every 6-12 months to lengthen the rod, as she grows. There is a 6 month wait, but I’m sure that will arrive really quickly.

Megan will be celebrating her 3rd birthday on Sunday 12th March. This is such a big milestone considering she was so poorly 2 1/2 years ago. Not much planned really, just lots of presents and cake.

A big thank you to everyone who continues to send cards and gifts. It really means a lot to Joe and Megan.

Update 20th January 2006

Just wanted to let you know Megan has just had her MRI and the results came back all clear today. The remaining tumour is not active and hasn’t grown at all.  This is great news as we were sure she might have relapsed as she has been so unwell lately. Catheter training next week and back to see the spinal surgeon in March. I’m sure he’s going to want to do surgery.

Update 30th December 2005

Megan is doing ok at the moment apart from suffering with a really bad cough and cold that she seems to have had for ages. She is finally on antibiotics. Euro Disney was great; we met loads of the characters and had a great time. Thank you to The Thomas Ball Charity for making the trip possible. We had a really good Christmas, although it was strange my dad not being with us. Megan is due for her next MRI scan on January 11th, we will get results on the 19th. Then we are back to Great Ormond Street on January 23rd and 24th for catheter training, something I’m not looking forward to but has to be done.

I would like to say a great big thank you to Sally Barrett who was their Christmas Elf this year. We received a HUGE box for both the children. The children loved opening all the presents from the Christmas Elves. Also a great big thank you to everyone else that sent them gifts.

I wish everyone a great new year and hope that 2006 is a better year for us all.

Update 6th December 2005

Just to let you know we are going to Euro Disney on Thursday. This trip has been organised through The Thomas Ball Charity. Three magical days with Mickey, Minnie and friends. Megan is doing great, but had a slight ear infection last week. Will update when we return.

Update 23rd November 2005

Megan is doing really well at the moment. She seems to have got over the scarlet fever really well. Great Ormond Street have decided that we will start catheterizing Megan. We go for training in this procedure on January 11th.

Friday 25th November we are going to stay in New Milton at TJ’s. This is the new lodge recently purchased through the Thomas Ball charity. We went in the summer but had to return early due to my dad being so unwell. Anyway the charity have offered it to us again for the weekend. We are really looking forward to it.

Nothing else to report really. We have no hospital appointments until January now, yey. This will be the big one though. It will be her MRI to check the remaining tumour in her spine hasn’t changed at all. We hate scan time, its a really scary time.

I look forward to the next update, i can let you know about the break we’re having.

Update 7th October 2005

We have spent the whole day at casualty with Megan. She was running a high fever for 2 days and developed a nasty blotchy rash. Anyway after waiting 8 hours we were told that she had scarlet fever.

Update 3rd October 2005

I would like to say a big thank you to anyone who sent posty to Joe and Megan. My dad lost a short battle with cancer in August and posty has really helped them both.

Megan has recently had her 4 monthly MRI scans. They all came back clear, which means Megan is till NED. She also had some bladder scans done which so that she does have some bladder control. We have to wait to meet with her urologist but hopefully this means we wont have to catherterise just yet.

On a downside, Megan’s scoliosis has progressed. The spinal surgeon will see her in 6 months and if there is more progression she will have surgery, to have a spinal growth rod.

Again a big thank you to everyone who sends posty, it really brightens their day.

Update 17th September 2005

The good news is that Megan’s scans all came back clear. It has been such a tough few months we needed some good news.

Also her bladder assessments show she has slight bladder control which is great. We have to wait for an appointment with the urologist but we had good news all round.

Update 29th June 2005

What a fab thing you do. Joe and Megan enjoy getting parcels/envelopes for them, it makes them feel special. I want to say thank you to Kate, Sue and Lorna for the lovely gifts.

Megan is doing well. She finally got her wheelchair, its only took 10 months! She’s learning really quickly.

Her tests at Great Ormond Street were cancelled as she had an infection. These were bladder tests and are very important, so I have to change for another appointment.

Now it’s the school holidays, we are all looking forward to a holiday in August. We are going to Hampshire for a week and can’t wait. The holiday has been donated by the Thomas ball charity. We are so grateful for their generosity. I can’t wait to let you know all about it.

No more hospital appointments for 4 weeks (that’s a first!). The next MRI is scheduled for September, so that will be a tough time.

We are looking forward to Joe’s birthday at the end of the month. We have booked a party at the local ball park for him and his school friends, they both really enjoy going there.

Update 22nd June 2005

We are back at Great Ormond Street 4th July to have pre-op assessment for the following week when she will have the pubic lines put in to check the proper function of her bladder. We will be going in on the 11th july and have to stay over night in the patients hotel. More tests will be done on July 12th. We are still waiting for an appointment with Megan’s Neurologist. Her appointment was cancelled when she had chickenpox.

Story written 2010

Max was born with chronic renal failure, which meant that both of his kidneys were not working and he has only ever had about 5% kidney function. Max was 8lb 6oz at birth but had a lot of fluid around his body and within 24 hours he weighed 7lb 4oz. Max has undergone several operations in the past 2 years, the first one at 3 days old to create an artificial opening through his tummy wall into his bladder so urine could drain constantly, and to insert a dialysis catheter, which was never needed so was removed when Max was 10 weeks old. More operations followed and Max has spent lots of time in hospital, or at home attached to one machine or another, but he has always been so brave and resilient.

Max has had dialysis previously but had constant infections in his catheter line so was taken off dialysis in September 09, and by nothing short of a miracle, Max has not needed dialysis since. All Max’s doctors are baffled as to how Max’s little body is coping, and how he remains so well, as he really should be critically ill, but Max is a fighter and doesn’t let anything get him down or stop him.

Max is waiting for a kidney transplant and is about to go on call for a donor, whilst his mom and dad are both being assessed as potential donors. Max has regular blood tests to monitor his condition and he has an injection once a week, and is fed via a gastrostomy. Max has a huge food phobia but with the help of several therapists is slowly learning about food and can now touch certain foods, although he doesn’t eat anything at all.

Although Max is 2 and a half, he is very small, in only 6-9, or 9-12 month size clothes!! Max is due to start pre-school in September, so we are currently trying to order uniform for him, in his tiny size!!

Update 2nd June 2014

After a very difficult 8 months we are very pleased to say that Max is doing really, really well! Max’s transplanted kidney is working well and he’s now able to eat and drink and has even managed to go back to school!

With this in mind we feel it is time to move on and let other children who need the smiles more receive the post and lovely gifts you guys send!

We are extremely grateful for all the post Max and his siblings have received over the past few years, and for all the love and support shown to us during some difficult times!

With love & best wishes

Michelle & family x

Update 7th March 2014

I’m very happy to say Max is now home after 5 months in hospital following his kidney transplant… and so far so good!!

Update 2nd January 2014

Max has been in Southampton General since 28th November and still no sign of coming home.

Jack has decided he’d like to give up his post for poorly children as he’s older now, but thank you to those who sent to him. Kacey and Max still both love receiving post, so a massive thank you to anyone who sends things.

Update 3rd December 2013

Thank you so much for all the love and support you have all shown towards Max and our whole family during Max’s kidney transplant. Max is doing really well and the new kidney seems to be working well. We’ve all had a sick bug recently which meant Max needed to spend a couple of days in Southampton hospital, but hopefully we’re over the worst now.

Update 29th October 2013

Three weeks ago today my baby had his kidney transplant! What a long 3 weeks it has been, with lots of ups and downs! But… (all being well!) we’re transferring back to Southampton for a couple of days then hopefully HOME!! We all cannot wait to have Max home and have some family fun time! Thank you for your support along the way!

Update Sunday 13th October 2013

Day 5… Max is doing well, he’s able to move himself in the bed using his hands and feet, and he’s sat out in the chair twice! His bloods are still coming down but very slowly, and his urine output is good. Ultrasound shows good blood flow to the kidney. Max has a small amount of internal bleeding in his bowel, which is being very closely monitored, so he’s only allowed sips of squash at the moment.

Max is very vocal, and is saying the funniest things, making us all laugh so much… he’s one amazing little lamb.

Update 10th October 2013

Max is doing ok, he’s been in a lot of pain but pain relief has been increased, so he’s now sleeping a lot. SAM (the kidney) is still sleeping but is doing well and we are hopeful it will kick in soon, meanwhile Max’s kidneys are holding their own. The surgeons and nephrology team are happy with the situation and its just a waiting game now. Max is having lots of IV fluid so is very puffy. Thank you for all your good wishes and for keeping us all in your thoughts.

Update 9th October 2013

Max had his kidney transplant yesterday. He had a restless night in ICU but is battling on as always. Max’s dad, who donated his kidney, is up and out of bed and hoping to be able to visit Max soon.

Update 7th October 2013

Max is currently in hospital and is going to receive his dads kidney.

The address to send post whilst he’s in hospital is:

Beach ward, Evelina children’s hospital, Lambeth Palace Road, Lambeth, London, SE1 7EH

Update 3rd April 2013

Max continues to have haemo-dialysis 3 times a week in Southampton Hospital, which is very time consuming and poses many restrictions, both socially and physically due to his perma-cath lines. Max is always positive and such a happy cheeky little chap though, you can’t help but love him!!!

We are all very grateful to everyone who stops to think about, and send a little card, note or gift to brighten his day. The colouring and sticker packs are brilliant, we create many pieces of art, which hang with pride! Kacey and Jack also love receiving their post, and it is so lovely to see the smile on their faces, so THANK YOU so VERY VERY much.

Update 8th March 2013

Max is doing well, though still dependent on haemo dialysis 3 times a week at hospital, whilst waiting for a second kidney transplant, either from a live, or deceased donor. Max has many restrictions and has a lot to cope with but remains happy with a positive outlook, which keeps the whole family going.

Update 5th November 2012

So sorry for not getting in touch for ages, Max has kept us all on our toes!!

He’s had quite a good run of health over the past few weeks, until last week (30th October) when he became quite poorly with high temp etc, so he was admitted to hospital where he stayed for over a week. He has now come home but we have to return to the hospital daily for IV antibiotics, due to the infection that Max had, which we now know is a blood infection!! Max is still on haemo dialysis 3 times a week, but he copes well and now does some school work whilst having dialysis.

Update 28th February 2012

Firstly can I say a MASSIVE thank you to everyone who has shown us all so much love and support over the past few weeks, we have all been through a really tough time, so THANK YOU!!!! We really appreciate it!

Max is doing ok, he’s now on haemo dialysis at Southampton hospital 3 times a week, he copes well with it, and it means he is closely monitored, which he needs right now. He needed a blood transfusion last week, but seems a bit better now. He returned to preschool for the first time today and loved it, after screaming and crying for the first 20 minutes!! We are all hoping to establish more of a routine now, so a little bit of normality can creep back in to everyday life, or is this to much to ask for?!

Max continues to be happy and cheerful most of the time, he can be a cheeky monkey, but it is his fantastic personality that carries us all through the ups and downs!

Thank you to everyone at Post Pals, you’re all stars!

Update 19th January 2012

Max is having yet another trip to theatre, this time to remove the new kidney as the transplant has failed and it’s making him very poorly.

Update 18th January 2012

Well, after a very long and exhausting roller coaster journey, tomorrow is going be d-day! Kidney stays and we struggle on? Or kidney comes out and we get my baby well, recovered, and home with a plan! Personally, after seeing him struggling to breathe today and needing oxygen, I think we should remove it and let him heal. Nobody wants a half hearted transplant that’s causing more problems than previously had! So let’s wait until tomorrow to get a plan and do it. I just want my baby safe and well, we’ve all had enough now!

Update 16th January 2012

Max was doing really well after his kidney transplant and was hoping be home at the weekend, but he wasn’t transferred as ‘bloods showed early signs of rejection’. It meant he had to go to theatre for biopsies as the scans showed the kidney wasn’t emptying properly and so a catheter was put back in. IV meds were needed, but after 6 needles that day he had no veins left, so they had to wait for a PICU doctor.

Max’s bladder wasn’t working properly but the biopsies showed no sign of rejection. He is now in ICU. Surgeons removed a large blood clot from the artery to his kidney. The kidney has been saved but he has had to go back on dialysis to give it a rest.

Update 7th January 2012

Max went into theatre for his kidney transplant on the 4th January. He was put on a ventilator and sedated in PICU but was quickly off it and the first thing he said was ‘can I have some coke and stand up now?!’

Our thoughts are with Max’s family and also with his donors’ family.

Post can be sent to Max in hospital, he would love to receive some smiles!

Address: Beach Ward, Evelina Children’s Hospital, St Thomas Hospital, Lambeth Palace road, Westminster, London, SE1 7EH, United Kingdom.

Update January 2012

Max got his call and had his transplant! He is getting stronger by the day and hoping to transfer to his local hospital soon.

Update 18th August 2011

Max is doing really well on dialysis at home, but it means we are sometime restricted by the routine. However, we manage and Max’s siblings are amazingly understanding and supportive. No news on transplant yet, but hopefully it wont be to much longer, although sometimes it seems like an impossible dream!

Thank you so much for every piece of post, which the kids just love receiving, and really brighten up their day. Jack (Max’s brother) had lots of birthday cards which is just lovely. We’re all very touched by people’s generosity.

Update 13th April 2011

Thank you so so much for your lovely cards and gifts sent to Max during his long hospital stay whilst his dialysis was established and balanced out. The post really cheered him up and helped pass the time of day. Max is home for now, long may it last!

Update 13th March 2011

Max now needs dialysis daily (12 hours out of any 24 hour period) and will be going into hospital tomorrow for 3/4 weeks (maybe home for a couple of days in the middle somewhere!). He will be going to theatre on Tuesday afternoon to insert the dialysis catheter, and hopefully starting dialysis after about a week or so.

Update 1st March 2011

Max continues to do well against all the odds!! We have been told it is only a matter of time before Max requires dialysis again so we enjoy each day as it comes at the moment!

Max has recently gone from a cot to a big boy’s bed – a massive step for someone attached to machines over night – and very scary for mummy too!! He has done fantastically though and is such a big boy now!!

Thank you to everyone who continues to put smiles on the children’s faces with your lovely cards and gifts. Thank you for Max’s lovely teddy which he now snuggles up with in bed, and thank you for Kacey’s fabulous parcel. The packaging was brilliant, almost too nice to open! Kacey loved all the items in the parcel and has had great fun. Many thanks.

Update 2nd January 2011

Thank you so so much to everyone involved in the elf scheme. Max and his siblings had some amazing gifts and their little faces light up when receiving such amazing parcels. Just magical, thank you.

Thank you to EVERYONE for everything, from cards to gifts, they all mean so much and make Max and his siblings so happy.

Update 2nd October 2010

Max continues to do extremely well with very little medical intervention, which completely baffles all our doctors, who describe Max’s condition as ‘eye wateringly painful to read on paper’. Yet Max is doing well at present as though he has no illness, so he is allowed to plod on for now, although we have been told he could become very very poorly very very quickly as his blood results already show that he should be chronically ill, so we make the most of every day. Max has started Pre School now and he really does enjoy it (once I’ve left him and he has some dutiful tears, for my sake of course!). We are hoping to meet the transplant surgeon as soon as possible to get the ball rolling for Max’s transplant, but it is quite hard to co-ordinate appointments when we live 160 miles away from the hospital!!

A massive thank you to Beckie for Kacey’s box of goodies for this month’s theme, she was so excited walking home from school that I thought she might actually burst, she LOVED it! Everyone loves the Dottie project, our litter mate Ellie goes everywhere with us, and we do get some strange looks when we are taking pictures of her! She even has her own facebook page! And THANK YOU to everyone who continues to send post and put a smile on the children’s faces!

Update 31st August 2010

Max is due to start main stream pre-school on the 8th September after the staff receive some training from the medical team. This is such a marvellous milestone which we didn’t know if would reach, so it is quite an emotional time right now.

Max has about 4% kidney function at the moment, but continues to fight and live life to the full with very little medical intervention. This really baffles the doctors and consultants, but in their words, something is working so don’t change it!! We are due (overdue really!) to meet the transplant surgeon and transplant consultants in London soon (hopefully this month) to get Max listed for a deceased donor and to continue the work up for a live donor.

We are hoping to get away for a few days towards the end of the month, not too far, just  a little break, which will be nice.

Thank you to everyone who has sent post to Max and his siblings, they really do enjoy receiving their post. Max and Kacey were really excited to receive a letter from Dotty, and cannot wait to meet their new puppy – they have lots of adventures planned. Max loves sticker books so has had lots of fun playing with them this month, especially as the weather has been rotten!! Thank you so much to Donna & Matt for the gorgeous hand made teddy for Max, he loves it.

Update 18th August 2010

Max and his siblings really love getting post; it is amazing to see such a huge smile from such a small gift/letter, so thank you so much to every ‘friend’.