Story written 2005

Reuben was born in December 2002 just before Christmas, so he was the most wonderful gift we could ever have wished for! As Reuben developed during his first year, family and close friends would occasionally comment that his head tilted to the one side, we just put it down to him being tiny and with all the developing from sitting to crawling to walking it would be something he would stop doing.

Reuben went to stay the night with his Nanny and Dan Dan in May 2004, he was 17 months old. When we went to collect him, I thought he looked a bit wonky and was walking quite ‘dandily’. Anyway that night when I bathed him I noticed a curve in his spine. I think the time away from me, had enabled me to see that something wasn’t quite right with his stature.

Anyway Reub went to see lots of Drs and was referred to the Orthopaedic Hospital in Birmingham. We were told that he had very severe scoliosis. This was very difficult to accept as he appeared and still does to be a typical active toddler.

Reuben had lots of tests and we were told that he had 4 fused ribs and an ‘s’ shape spine. The capacity of his one lung was also being affected as the spine was compressing it. Reuben’s only hope for a relatively normal life was pioneering surgery which had been developed in America and Reuben’s specialists had just got the licence to perform it here.

In January of this year, Reuben had his first titanium rib implant. It reaches from his neck over his rib cage and attaches low down on his spine. This will be lengthened 2 -3 times a year and will be replaced by bigger models about three times. As Reuben is such an active little boy, they think the implants may break so will need replacing also should this occur. This surgery will have to continue until Reuben stops growing, around 18 yrs of age. Early next year, he has to have a second device which runs under his armpit to the bottom of his rib cage and also two spinal rods each side of his spine. It is hoped that they will lengthen all 4 rods at the same time to reduce the operation numbers.

We are very fortunate however that Reuben is a very strong and spirited little boy and he will not let anything drag him down. He is just 2 yrs of age and after having such major surgery he was at home playing with his toys just 4 days after the operation. He is truly a wonderful and brave little chappy.

Update 15th March 2009

Sorry it has been so long, things here have been so very manic. We went to Disney in November which Reuben and Louis really enjoyed. It was a lovely break and the weather stayed dry but boy oh boy it was cold.

Reuben had an appointment in Birmingham last Saturday and we were told he needs urgent surgery to replace some metal work and also to expand on the opposite side. We were not thinking he would outgrow the Titanium rib so quickly but it appears he has had a huge growth spurt.

So, the little guy goes in on Tuesday for surgery. This time he is going into the Orthopaedic Hospital. We are hoping it won’t be quite so manic and busy. This time Jonathan has to take him without me as we have baby number 3 due in 2 weeks and it is all a bit much.

Apart from this, Reuben is great and doing so well at school. He’s still a real inspiration to us all when we moan about silly day to day stuff and I try to put things into perspective!

Update 5th November 2008

Reuben is doing very well all things considered. He is back at school and doing very well too. We’ve just had parents evening and despite his time off school he is doing so well and his teacher is full of praise for him – phew.

As the weather has started to get colder, we have noticed Reuben becoming increasingly stiffer and putting his shoes on and basic things like that are appearing more difficult. However, he never complains, he just grits his teeth and gets on with it all. He is getting some pain in his hip too which can keep him awake at night. We are awaiting a response from his Surgeon on these matters.

We still do not know what is scheduled for Reuben next. His Paediatrician has written to Birmingham to ask when and what is going to be done next. We are still awaiting a response…

Last Christmas was not a great time for us after Reuben had his surgery. So we have decided to make this one extra special for him and for us as a family. We are going to Euro Disney for 4 days at the beginning of December. Reuben is so excited, Louis too. So, fingers crossed that the weather stays dry for us.

A huge thank you to all the people who continue to send post to Reuben and to Louis as well.

Update 20th August 2008

Reuben received a lovely book yesterday. Thank you very, very much. It has some wonderful ideas to keep the boys amused over the wet sunny days!

The money that enabled Post Pals to send this book was raised by Pal Jon Paul O.

Update 4th August 2008

Reuben went into Birmingham on the 23^rd of July for his long overdue surgery. It was hard going, but we are so relieved it is now done. Reuben had two incisions in his back. Each one was to lengthen the metal work he had put in last December. He is doing very well now and seems not to have suffered the same trauma as he has previously. He has been back to hospital since with severe head pains and vomiting. We were advised to take him as it could have been linked to the surgery but thankfully it was just a nasty old bug!

Looking at Reuben now, 12 days on, it is hard to imagine that he has had surgery when he is lifting his 2 year old brother and running around. We go back to Birmingham next Monday to find out when the next lot of surgery is going to be and what they intend to do.

At the end of August we are going to Scotland for a week by the sea, we are all looking forward to it very much!

We’d like to say a continued thank you to all the people who send post to Reuben and to Louis.

Update 18th June 2008

Reuben was due to go into hospital today to have his two implants adjusted. We had a phone call last minute to say the operation has been cancelled AGAIN! This time it was due to them being unable to get the parts required for Reuben’s back. It just adds to the anxiety again, but we should be used to the cancellations by now. The operation is now due to go ahead on the 23^rd of July.

Apart from this, Reuben is very active and well. He tires easily and by evening he is a little grumpy but it is hardly surprising as he is such a busy little bee!

Reuben has had so much post in the past month so thanks to all of you who have been so kind. It is wonderful what you do, it certainly makes Reuben smile (and Louis too).

I have a pile of letters and cards which I have been meaning to reply to and the pile is growing daily, so please forgive me if I don’t reply, I just don’t have the chance at the moment.

All of the post is so greatly appreciated, but a special thanks to the following people: Kate Dee for the wonderful cards and gifts. Reuben loved growing the dino egg and is now growing a sea horse. Thanks also for the Power Rangers. A lady from Largs in Scotland sent Reuben and Louis a book, pencils and rubber set, thank you. Ellyn Yeager from Alabama. thank you for the post. Thanks to Jade Boyd who sent two lovely books. Emma from Wrexham wrote to Louis and sent a lovely card with surprise glitter and sprinkles, thank you. Emma, his favourite animal is a Giraffe, his TV favourite is Mickey Mouse and Postman Pat and I think he likes the colour blue. Final big thanks to Adam and his mum from Ashford in Kent. Thanks for the lovely letter and beautiful pictures, I will reply soon.

Update 7th April 2008

Reuben was due to have the metal rod and titanium rib extended at the end of April. This was to be done before we go on a family holiday in May. When chasing the date, I was told the list was full. So there will no operation at the end of April. It is so frustrating as we are going on holiday and try to organise things to keep the family as normal as possible. I’m not sure what we will do now; I’m awaiting news from the hospital.

Apart from this Reuben is on great form and is really well and back at school.

Update 13th March 2008

After Reuben’s operation on the 12^th of December he recovered very well. He had major spinal surgery and after a couple of weeks at home you would never know what he had been through. He is coping well with his new limitations now that he has metal work fitted from the top of his rib cage to Lumbar Spine No. 3 and another rod from as far up his spine near his neck as they could go to the same vertebrae. Looking at the X-rays it is very hard to believe he is carrying it all around with him day to day.

He is now back at school and is coping well. He is still taking part in PE although he is now unable to do forward rolls etc. He is thankfully still able to climb on apparatus and swing on the ropes. I am sure his teacher is going to collapse with fright one of these days!

We went back to Birmingham last week and he is scheduled to have further surgery at the end of April. They are going to lengthen the VEPTR and titanium rod then. It will mean 2 incisions which we haven’t been used to before, but knowing Reuben he will bounce back pretty well. The only trouble is that as he gets older he worries more and he picks up on bits of conversations so it’s hard to distract him anymore.

Reuben’s little Brother Louis turned 2 on Saturday! It is hard to imagine where the time goes.

Post Pals has really helped Reuben on his road to recovery. He really enjoys seeing post on the doormat for him! Thanks to Julie, Kate, Karen, Michelle, Linda and all the wonderful people who take the time to volunteer.

Update 4th December 2007

Reuben was scheduled to be in Birmingham today for his operation tomorrow. Unfortunately we had an answer phone message left for us telling us it has been cancelled as they needed the theatre space for an emergency.

Reuben’s operation is now on the 12^th of December. We are pretty gutted as it is so close to his Birthday and to Christmas and we have lost that week of recovery before them. We hadn’t told Reuben he was due to go in, so at the moment he is still none the wiser thank goodness.

So for another week, we have to pray that he doesn’t come into contact with any germs which could threaten the operation. Easier said than done as the amount of coughs, colds and chicken pox flying around at the moment is huge!

Reuben had a big early Birthday party on Sunday with 35 children there. It was pretty wild, but he had a great time although he was exhausted.

So, hopefully this time next week we will be in Birmingham awaiting the dreaded operation.

I am sure this will be the best chance I will get to wish everyone reading this and to everyone at Post Pals a very Happy Christmas and New Year. The work you do is so valuable and we thank you very much. Here’s hoping for a better 2008.

Update 22nd October 2007

Reuben had an appointment in Birmingham today. We have finally had a date for his operation. As long as it isn’t cancelled for the 4^th time, it is due to take place on the 5^th December. I know there is never a good time but it is so close to his birthday and Christmas, it is sure to spoil them for him.

Reuben is having his VEPTR implant completely replaced and 2 new isola rods fitted to either side of his spine. He was due to have an anterior growth arrest done on some extra vertebrae which are growing, but that isn’t going to happen at the moment. We are pretty relieved as it is nasty and they apparently have to do it from the front of his chest. This with the other two operations concerned us. Thankfully, Mr Marks decided that it was too much to put him through for too little a result.

Generally, Reuben is keeping very well. He seems to have grown lately. He is getting increasingly tired and he looks more twisted as he walks and especially when he runs, but the surgery should hopefully help that. He is going to miss about 6 weeks of school which is a pity, but of course it could be far worse.

We do feel much happier after today’s meeting that the right decision has been made for our little boy. I am just willing Christmas to be here then the worst will be over.

Thanks again for the post, he loves it!

Update 2nd July 2007

Reuben’s operation for the 11th July 2007 is now cancelled. The surgery had been booked on a day with another child and Reuben needs the day to himself as the operation is 7-8 hours long apparently. Anyway we are waiting now for a new date. It has all been a bit of a nightmare as arrangements had been made for Louis at home whilst we were away. Now it’s a struggle as friends, family and Louis’ child minder are due to go away in August so it could be tricky, but hey ho it could be worse.

One of Louis’ little friends has been diagnosed with Ecoli, so at the moment we are in quarantine until Louis’ results come back clear (fingers crossed).

Reuben is fine, he is tired at the moment, and I think school is taking its toll. At least the summer holidays will soon be here. Reuben had a great time when we were on holiday a fortnight ago. He did lots of swimming and learnt a little Spanish (very cute). Shame it hasn’t stopped raining since we got home!!!

Update 2nd May 2007

Today Reuben was meant to be in Birmingham Children’s hospital having his VEPTR implant lengthened but we are at home! We had a last minute phone call to say the operation was cancelled. The surgeon who was due to carry out the procedure wasn’t happy about doing the operation and so we were called in to the hospital on Monday to discuss what the plan was to be.

To cut a very long story short, he was being considered to have a second VEPTR put in near to his spine so we thought we were going to discuss this operation and when they were going to do it. They have told us that this operation is now off as it was in their opinion too experimental and short term. Reuben is now unfortunately in line to have spinal rods fitted next month.

We certainly were not expecting this, as we had previously been told that this was something he would need but they would hold off for as long as they could as it is risky and also the infection rate is high post op. Reuben is also having a growth arrest operation on a rogue piece of vertebrae which is extra and is growing, making his top curve worse.

We managed to have a look at the CT scan and clearly saw the spine and to be honest from the ribs up it just looks like a blob of melted candle wax. It still beggars belief as he is still so fit and healthy looking and completely mobile.

We don’t know what the future holds post op, so if anyone has any experiences of Isola rods please email us, as we are craving information and I can’t find anything on the internet.

Thank you again for everything you do, it is much appreciated. Thank you so much to everyone who has written and sent parcels to Reuben. A very special thank you to Kate Dee for the Power Ranger, he was over the moon with it and I had to persuade him not to take it to bed!!

Update 23rd April 2007

We have been notified that Reuben is going into Birmingham next Wednesday (2nd May). We haven’t had any consultation about this or what the future surgery plan is for Reuben so we are none the wiser really. Next Wednesday they are going to lengthen the new part of the VEPTR which they fitted last September. I am hoping that they will be able to give us an idea of their plan for our little fella next week. We would just like to have an idea of what’s what, especially as Reuben is now in school.

Reuben hasn’t however been in school for a few days as he has had tonsillitis so he is on antibiotics. Hopefully it won’t affect his operation date. We don’t want to prolong it too much. We also have a holiday booked in June which will be great for him and for his wound healing in the sunshine.

Not sure how and when he will return to school after this operation as it is all new to us, but I guess we will have to see how it goes. I have always been one for planning but I am fast learning that where Reuben is concerned and Louis too, it is just not possible!!

Thank you so much for the post. Reuben and Louis really enjoy it. Reuben loves the fuss, it just emphasizes that he and his ‘special’ back are special.

Update 29th March 2007

Reuben had an appointment on March 19th in Birmingham. The object of the appointment was to see if Reuben’s spinal curve had worsened since his last operation. Reuben was really anxious about going despite us reassuring him that he was only going for an xray and chat. When we arrived at the orthopaedic hospital, he was just so relieved that it wasn’t the Children’s hospital where he has his surgery. He is really switched on to it all now and we have to be quite careful what we say in his presence!

We saw other children at the hospital who obviously had severe spinal curves as they were unable to stand straight etc. We were struggling to accept the diagnosis of Reuben being very severe as he appears to be so ‘normal’? Anyway, once Reuben had his xray, we spoke to his specialist and he explained that Reuben has 2 curves like an ‘s’ shape. This means one curve balances out the other which is why he isn’t bent to one side. So having a double curve is causing them a headache as they don’t know what to do next.

At the moment he has one VEPTR on his rib cage and they want to also fix in isola spinal rods but not until he is around 7yrs old due to infection risks and the other associated risks involved. So at the moment the specialist doesn’t know whether to put in another VEPTR on the opposite side from the top to the bottom of his spine until he has the isola rods, or leave him and see what happens.

The surgeons have not had a case like Reuben before, and to be fair he couldn’t make a decision as to what they will do. So it has been left that we will receive a letter within 2 weeks to tell us what they have decided. So life is kind of on hold again and when the postman drops the mail through the door my heart is thumping!

Reuben just had his first parents evening and he is doing very well at school. The sad thing is that the teacher told us of his talent for PE. He is really adventurous and enjoys it very much. Depending on whether he has this second VEPTR will depend as to whether he will be able to continue doing PE as it is at the moment. So we will have to see what happens!

Update 3rd January 2007

Reuben is great at the moment. We still have random days where he re-lives events in Birmingham Hospital even down to food he ate there 2 yrs ago (no I am not joking!!) We don’t go back now until March 19th which is nice as we have a busy time ahead of us starting tomorrow!!

My little fella is starting school! I feel utterly devastated by the thought but I am sure it will be okay. We fought for so long for Reuben to have his first lot of pioneering surgery and ever since I seem to be battling on his behalf for one thing or another. It feels odd handing him over to a teacher who has 18 other little people to look after when he is used to pretty much 1:1. He is more than ready though and I think he will enjoy it. We have to make the best of it because if he has spinal surgery later this year he will miss a lot of school and his life will be more restricted.

Thanks to all the wonderfully kind and thoughtful people who sent presents to Reuben and Louis too!! Christmas was truly wonderful and Reuben was overwhelmed with it all. Louis I have to say just enjoyed eating the wrapping paper on the day but has since discovered the joys of playing with his new toys and books!!

There are too many people to thank one by one, but you know who you are so from the bottom of our hearts ‘THANK YOU’. Special thanks do have to go to Julie and Alan, Kate Dee, Steve and Kirsty (Pal).

HAPPY NEW YEAR TO YOU ALL XXXX

Update 12th November 2006

Reuben had his operation on the 20th of September. The operation went to plan but it was terribly difficult for Reuben who was left pretty traumatized by it all. He was in much more pain than usual and controlling this was a huge challenge. The Surgeons replaced the middle section of the VEPTR as the previous part could no longer be extended. This was the first time they had done this operation.

We returned to see the Surgeons a couple of weeks ago and they were satisfied with the way surgery had gone and the VEPTR is supporting the rib cage and his lung is able to expand. However, when studying the x-rays they noticed that he is now leaning more to the right (spine) and this is a cause for concern. I think now that they are happy that the lung and ribs are okay they are going to need to put their thinking caps on as to how to sort out this next problem.

They are looking to perform pretty major spinal surgery next year, when will depend on the next review in March. They have a couple of options but both are things the surgeons have never done before so we are pretty worried. The next surgery will also impact on activities he is able to carry out.

It will be a huge blow for Reuben. He is getting more and more aware of what is going on and he gets very upset and anxious. All we can do at the moment is enjoy his 4th Birthday, Christmas and baby Louis’ 1st Birthday which all come and go before March 19th!!!

Reuben currently is back to his lively happy self and apart from the odd nightmare about hospital life is pretty normal. He has started two 1 1/2 hr sessions a week at his Primary School which he adores so he is being a busy bee which is just as well as he is so ready for full time school.

Thanks to everyone who sends Reuben post and a special thank you to Kate Dee for the fantastic balloons. Thank you to Julie and Alan Barrett and to Bob for the bear who Reuben now calls ‘little Reuben’.

Update 17th September 2006

Reuben has his 4th operation on Wednesday the 20th of September at Birmingham Children’s Hospital. He is due to have part of his implant replaced and also lengthened. Reuben is yet to learn of his operation as we don’t intend to tell him until the night before. He isn’t coping too well at the moment with his ‘special’ back and is frequently re-living previous operations and hospital experiences, so the timing of this operation isn’t great, but hey when is it???

Apart from the above, Reuben is on good from and is a joy to be around. He is so full of energy and life and soooooo many questions, they are just never ending. I didn’t realize a 3 year old could have such a thirst for knowledge!!!

Thank you to Julie and Alan Barrett for the post.

Update 10th July 2006

Reuben is currently experiencing difficulty traveling in the car as he is finding it very uncomfortable. He has been seen by an OT who doesn’t really have any ideas as to how to help, which is a shame when we want to spend the day at the seaside!!! Reuben’s surgeon has been approached by our GP to see whether his next operation needs to be brought forward, and maybe this might help him in the car. Reuben is still just so crazy about his baby brother which is lovely and he still enjoys his post. He asked for a pinboard for his bedroom so he can look at his postcards etc.

Update 22nd June 2006

Reuben is really well at the moment apart from a heavy cold which just won’t shift. He still really enjoys the post he receives. We are still awaiting confirmation that his new baby brother Louis’s spine is okay, but at the moment he is a bit small to tell without x-rays etc so we will wait until he is a little bigger!!

Reuben has started pre-school one morning a week and he loves it, it was hard letting him go without me but with full time school starting in January next year I have to let go sometime!!!

Update 13th March 2006

Reuben had a very successful lengthening of his titanium rib at the beginning of February. We are not sure at the moment how much he was lengthened by. The next surgery will involve the fitting of a new middle section as the titanium rib has been lengthened as much as it can go. The surgeon was very confident about this and it appears that Reuben is doing very well on the treatment. This time even Reuben’s wound healed with no infection or complications so all in all it went very well.

On the 8th of March Reuben’s baby brother was born. His name is Louis George and he weighed 7lb and 3oz. Reuben is very smitten at the moment. I hope it continues.

This month Reuben was sent cards from the card making forum. The timing was just perfect as so many came after his operation, I think he felt even more special. All of the cards received were really wonderful, thank you to all the ladies who must have spent such a great deal of time making them. We will treasure them always. Thank you so much to Kate Dee for her beautiful gifts and the most fantastic balloon we have ever seen.

Update 29th January 2006

Reuben has had his operation brought forward to Wednesday 1st February in Birmingham Children’s Hospital. He is having the titanium rib lengthened. It is a relief really that they are not fitting a second device on this occasion. We haven’t really discussed it with him as he got very stressed out when we talked about going for a check-up last Monday. I am sure he will be fine; he is a strong and gritty little fella. Thank you to all concerned for the wonderful post.

Update 9th January 2006

Reuben has another operation on the 8th of February in Birmingham. We go for tests on the 23rd of this month and that will determine what he will be having done. We are hoping it is just a lengthening of the titanium implant. I will be 36 weeks pregnant with No 2 when he has his operation, so the least complicated the better really!!

Reuben has been very well this month and his Birthday and Christmas presents were ‘out of this world’. Reuben had lots of farm toys, which have gone down a treat, especially as he will now play for short periods on his own using his wonderful imagination and Mummy and Daddy can have a little break!

We would like to thank everyone who sent cards and gifts to Reuben. I would have liked to have written individually but there were so many I just can’t. We would however like to thank KATE DEE from the bottom of our hearts.

Update 28th September 2005

Reuben is doing really well. His scar has healed nicely and he is back to being a normal and busy 2 year old. We have booked a family holiday and Reuben is so excited about going that i think he may burst!

Thank you again for the lovely post Reuben has been receiving, it really makes his day.

Update 30th July 2005

Reuben had his operation on the 13th July in Birmingham. The surgeons managed to lengthen his titanium rib by a few millimetres. Not terribly satisfying for the surgeon, but they cannot stretch Reuben too much or everything will just collapse and break. Hopefully he willl be left alone now until around January, unless anything breaks whilst he is playing wildly!!!!!

Reuben had a nasty reaction to the gas this time and was very sick. Fortunately as with all the children you read about on this site, he bounced back and is now a very busy 2yr old once again.

Reuben told us that he had a very ‘special’ back, we try not to keep secrets from him and prepare him as well as we think we can for trips to hospital. I would hate him to be shocked and unprepared for anything planned.

Reuben loves his post, it really does make him so happy.

Update 22nd June 2005

Reuben just gets so excited if there is any post for him, we are overwhelmed by peoples kindness. Thanks to all, but special thanks to Katie Dee and Lesley Southerden.

Reuben has his next operation now on the 13th July in the Birmingham Childrens Hospital. He will be admiited on the afternoon before and we are unsure at the moment how long he will be in for. He is having the titanium rib lengthened.

Update June 11th 2005

Reuben’s surgery is now due to be 3rd August.

Update 1st June 2005

Reuben is really chuffed with his letters and parcels (Mummy and Daddy get pretty excited too). Reuben has had a lot of emails this month. Reuben should have had an operation in May but didn’t. We will be phoning next week so I guess it will be now be June. Reuben has had chicken pox but he coped very well and is now back to his usual jolly and wicked self. Thank you for the yummy biscuits and the books from Israel! Also to Sue.

Story written 2004

Nicole was diagnosed with a Spinal Fibro Sarcoma tumour in Sept 03.

She has had 4 months of intensive chemo and has almost completed 30 sessions of Radiotherapy. She is staying at Sam’s House, a CLIC funded property in Bristol. She hopes to return home when Radiotherapy has finished, to complete her chemo at Exeter.

The biopsy of the tumour exposed her spinal cord and she has been paralysed from the waist down and we have been told that mobility is unlikely to return.

Nicole is coping considerably well, and is an inspiration to us all. We are unsure of her long term prospects, but can only pray that she makes it through.

Update 6th February 2008

Nicole is now moving on from Post Pals. It has been a privilege to be involved with Post Pals, and it has been a real help to Nicole and ourselves, to know that we have support from people all over the World! We would like to wish you continued success, and hope that you are able to cope with the demands that success has brought you!

Update 5th December 2007

Nicole is well. We are waiting for a date for her 6 monthly MRI scan, which is due anytime now. She has an appointment with her spinal surgeon in Frenchay early in January next year.

The girls enjoyed their summer holidays; we spent a week at Haven in Exmouth and a week at “Tom’s Retreat,” at Hoborne Naish nr. Christchurch. On our visit to Naish, Nicole got to meet two of her long term Post Pals, Liz Cook from Brighton, and Stuart & Liz Knight from Southampton! Liz came across from Brighton with her mum for a day out at Paultons Park, and also visited us at home in Torquay recently, staying for the weekend, which the girls really enjoyed!

Lauren is now at school full time, and I have returned to work full time, hence the lack of updates! Nicole has been swimming with her school class and continues to learn the piano and enjoy Brownies. She has also started performing arts at school, and was a model on the catwalk at the school fashion show last week! In September, she got to go backstage at the McFly concert in Torquay, and meet all of the lads, get their autographs and some great photographs with them!

The girls are getting very excited about Christmas, and I expect they will get far too many presents as usual! We would like to wish everyone at Post Pals a Happy Christmas, and a Happy, Healthy New Year.

Update 29th June 2007

Nicole really enjoyed her 8th Birthday on 14th June and would like to thank everyone for their gifts and lovely cards. She had a party with her friends at the local theatre and watched Peter Pan on Ice. Her favourite present was Singstar for the PS2. She is becoming quite the Diva, and knocks out a great “In Your Eyes” by Kylie!!

She has also recently been up to Dartmoor with her school and had a great time exploring the moors. She was the first child to stay at the Youth Hostel in a wheelchair. Her school carer went with her, but it was a big step in her independence to be away from home for 2 nights!!

In May, Nicole completed the Cancer Research Race for Life in her wheelchair, with help from Mummy and “Team Coley.” Despite terrible weather conditions, she completed the race in 58 minutes and with matched funding from Barclays (Daddy’s Employer!), they raised over £4,000!!! Thank you to everyone at Post Pals for your support and donations.

Health wise Nicole is doing great and an MRI scan in April was all clear. She is also doing well at school and has a great group of friends that she has been close to since nursery.

Update 2nd April 2007

Nicole has had a quiet start to the year, but has a few exciting events lined up over the next few months. Today, she performed a piano recital in front of almost 100 people! She only started learning about 8 weeks ago, but her confidence has grown so much, she had no hesitation in getting up on stage and knocking out a few tunes on the Baby Grand Piano! In May, she will be competing in the Race for Life again in her wheelchair, and hopes to raise over £1,000 for Cancer Research UK. If you would like to support “Team Coley,” click on her homepage link above, and then on the orange “Donate Now” button. Barclays Bank will be doubling all donations received! You can also read a full update on Nicole’s progress this year.

Update 7th January 2007

Nicole has just returned from a dream trip to Walt Disney World in Florida! It was her second visit, and this time she felt much stronger, and was able to go on many rides that she couldn’t go on 2 years ago, including some of the smaller roller coasters! Christmas flashed past, but thank you to everyone who took the time to send cards, many of them beautifully hand made, and especially to those who sent gifts including, Naomi Whittingham, Becki, Stuart & Liz, Hayley Thorn, Julie & Alan Barrett, Celia Raven & Co, and Nicole’s special Christmas Elf, Liz Cook!!

Early in the New Year, Nicole & her sister Lauren went to see Kylie in her Showgirl Homecoming Tour at Wembley Arena, so it has been a busy but enjoyable couple of months! Daddy has done a full update on Nicole’s website, with photos of the Florida holiday. You can access it by clicking on the homepage link above. Happy New Year to you all and thank you for your continued support.

Update 28th September 2006

It is quite an appropriate time to bring you all up to date, as it is almost 3 years to the day since the MRI scan that changed our lives forever, the MRI scan that diagnosed our 4 year old daughter with Cancer. It’s been 3 years of highs and lows, tears and laughter. Who would have believed at the time, that we would make it this far and Nicole would look as gorgeous as she does on the front cover of Cancer Research’s Christmas Catalogue!! We are so proud of her, and would encourage you to order a copy of the catalogue, by clicking on this link  http://www.cancerresearchuk-mailorder.co.uk/catalogue_request It could become a collector’s item! Please place your order before Christmas, and help more children (and adults) like Nicole survive and prosper.

The girls are back at school and nursery now, but we had a very busy summer break. Nanny and Auntie Tracy came down from Portland to visit for a week, and we all went to Haven Holiday Park in Weymouth for a week mid August. Nicole & Lauren had a great time at the Kids Clubs, and dancing away with Rory the Tiger, and Bradley Bear in the evening disco with party dances. We also went to Chickerell and Weymouth carnivals during the week, and the girls went on all the rides, enjoyed the Red Arrows display, and the carnival procession with all of the floats. Nicole wanted to catch up with a friend she made last year at nearby Littlesea Holiday Park in Weymouth, so we visited Hayley and her Mum, Dad and Brother Adam one afternoon.

The big event in September was the South Devon Community Awards. You may remember that Nicole won her category as “Child in the Face of Adversity,” at last years awards. This year, we nominated her school carer, Barbara, in the categories of “Carer of the Year,” “Making a Difference in the Community,” and “Education Worker of the Year.” Barbara deals with all aspects of Nicole’s care, physical and emotional needs at school, and has been a big influence on her settling into mainstream school, and her positive outlook on life. Barbara has had a tough time over the last few years, but has always put others first. She worked in Care Homes when she was young, has worked with a number of special needs children, and has fostered over 25 children! Needless to say, we were absolutely delighted when she won the category of “Carer of the Year,” and you had to pick us all up off the floor, when she was announced as the overall winner on the night!! Nicole also got to go up on stage, as she presented this year’s child award to a lovely young lad called Liam, who suffers from Severe Eczema, and Cerebral Palsy. The evening went on until around 1.00am, and Nicole wore everybody out on the dance floor!!

We have nominated Nicole for a Pride of Britain Award, organised by ITV, the Daily Mirror, and GMTV. She is in the “Children of Courage” category, and we nominated her for the bravery she has shown throughout her treatment and the way that she deals with her disability. She has also done a lot of fundraising and profile-raising this year, for Whizz Kidz, Cancer Research, CLIC Sargent and Postpals. A lovely lady called Ciara came down from Granada TV in London to visit Nicole a couple of weeks ago, and we are now waiting to hear if she was successful. All the nominees will be assessed by a celebratory panel, including Richard Branson, and if she is recognised by the awards, she will get to go to the awards ceremony in London on 6th November. It would be wonderful for her to receive such an accolade, so fingers crossed!

Update 13th July 2006

Nicole is well and enjoying the last few weeks of school before the summer holidays. The MRI scan came back all clear, so we can relax now until November time when the next scan is due. She has just finished a 6 week course of Ranitidine. She was suffering from bad stomach pain, which was worrying us, but the medicine seems to have done the trick. It looks like it was just a bad case of indigestion, probably caused by sitting down for much of the day.

Nicole has also been to Bristol for more botox injections in her legs, and also to see her spinal surgeon at Frenchay. He is happy with the rods in her back, and will x-ray her again in November when we go up for the MRI.

Nicole’s 7th birthday was on the 14th June, and her party was on Friday 16th. Every birthday is now a landmark for us, and another step away from diagnosis and treatment. We remember celebrating her 5th birthday as if it would be her last, and pray that she will celebrate many more birthdays to come. Thank you also to everyone at Postpals who sent Nicole some lovely birthday presents and cards.

In early June we went on Nicole’s Make a Wish trip to London and had a lovely time. Later in the month we visited Jamie’s Mum Kelly and her new baby Amy Grace. Amy was born on 14th June 2006, so shares Nicole’s birthday!!

Update 19th May 2006

Thank you to everyone for all the lovely Easter cards and gifts for Nicole & Lauren, especially Liz Cook, Julie Barratt, Becky Butler and others! Nicole & Lauren now receive more post than Sara and I put together!! The Postman even knows where to leave the parcels when we are out!

Nicole’s latest scan came back clear, which is fantastic news now that she is 2 years off active treatment! She enjoyed meeting Hi-5 after their concert in Torquay, and is looking forward to her Make A Wish trip to London at the end of May. We will be staying at the Hilton Hotel, and going to the Lion King Show, Rainforest Cafe, The London Eye, Madame Tussards, Hamleys, London Zoo, and anything else we can fit in!! Please see website for full update.

Update 21st February 2006

For those of you in the South West of England, look out for Nicole on ITV West Country News on WEDS, THURS or FRIDAY night. It is likely to be on Friday, but may be earlier. We have just come back from Tesco in Ivybridge, where Nicole helped to launch Tesco’s new fundraising initiative with Whizz Kidz, who funded Nicole’s power chair. She had a star collecting race with another young lad called Joshua, and the press, TV and local MP were there!

Nicole and I are also going to the local radio station, Gemini FM on Thursday morning, to see how the radio programmes are made, and there is a good possibility we may be interviewed on air!! Locals should tune in to 96.4FM, and I think you may be able to listen online at Gemini FM, and listen live to Chris Edgecombe (Edgey in the Morning). We should be there from around 7.30am until 9.00am, so set your alarm clock!!

Update 6th January 2006

Thank you to everyone who sent cards, gifts and presents to Nicole and Lauren for Christmas. They were inundated every day and the playroom looked great with all the cards hung up! Special thanks to all of you who sent hand made cards, they really are very special and obviously took a lot of time and care to make. Nicole had a lovely letter with 4 cards from a school in Japan. Her class at school is hoping to do a project to send something back to them, as they have been studying Japan and its culture all term! Special thanks also to Nicole’s elves, Lorna Rogers and Liz Cook, who sent a big parcel each, full of lovely presents. Thanks also to Becki, Naomi, Jilly, Woody the dog and the Ravens for your gifts. Thank you so much!

Nicole was well over Christmas and had a great time. She has returned to school and has received her powered wheelchair, so is able to get herself to school and back now, with daddy trying to keep up! She has been nominated and won a little star award from Cancer Research UK. She will be going to the Aladdin pantomime tomorrow to watch the show and receive her award from Syd Little and Craig from Big Brother! She is up at the spinal unit in Salisbury on 9th January to be measured for a back brace and will have her next MRI scan in May/June 2006.

We wish everyone at Post Pals a happy and healthy new year! Keep up the good work; you are making a lot of children very happy. Thank you for your continued support, it means a lot to us.

Update 1st December 2005

Firstly on the health front, we went to Bristol for an MRI scan and Botox injections a couple of weeks ago (10 Nov), and nothing has changed since the last scan in June. This is fantastic news, as Nicole is now 18 months off treatment, so we can relax now and enjoy Christmas. The next scan is likely to be in 6 months time. We are hoping to get the scans closer to home, at Exeter, or hopefully Torquay. Bristol is a long way to go for just a scan, and Nicole understandably gets worked up and upset when we go. I took her up on my own for the first time, and she was sick in the car. Luckily I had a cooler bag to hand just in time. A tricky manoeuvre when you are doing 70 on the motorway!

On 13th November we went to Salisbury District Hospital (Odstock), where they have a specialist spinal unit. We have been trying to get to see them for some time now, as we want to ensure we are doing all we can to look after Nicole’s spine, now the Oncology is under control. We travelled up on the Sunday as it is a 3 hour drive, and stayed overnight. We were hoping for a nice comfy room for the night, but it turned out to be two rooms on a disused hospital ward! It was just as the cold snap started, and we had trouble trying to find staff on a Sunday to turn the heating on!!

We spoke to Mr Tromans the Spinal Consultant, and the Physiotherapist, Occupational Therapist, and Orthotist. We covered some of the ground that we have already dealt with locally, but it was useful to know that much of what we are doing is correct. We are trying some new medication to try and control Nicole’s continence. She has started a new medicine called Oxybutinin which relaxes her bladder, with the aim of keeping her dry between her catheters. It has had a dramatic effect, and worked almost instantly. However, it has side effects of nausea, diarrhoea, and gives you a dry mouth. We kept these symptoms from Nicole initially, but within a couple of days, she was struggling to swallow her sandwiches, so we had to tell her. We have now reduced the dose, and that seems to have improved things.

We now just need to try and control her bowel. Nicole takes Movicol to help things along, but there is no pattern. It could come at any time, and in any size, shape or form!! We have to keep a bowel diary for Salisbury, and they will then advise us how to move forward. They are talking about the possibility of enemas or suppositories!

The Physiotherapist and Occupational Therapist were helpful, and have come up with some ideas for exercises and equipment in the home, and will liaise with our contacts locally to implement their plans. The Orthotist looked at Nicole’s leg callipers, hips and posture. We will go back up to Salisbury in January to see him, to see if Nicole’s new stretches are helping, and to cast her for a back brace. We are not keen on this idea, because it is likely to be uncomfortable for Nicole, but it is something they are keen to try, as she does tend to slouch over to one side in her wheelchair, and needs her hips to stay even, to prevent further scoliosis of the spine.

They are also keen for Nicole to do as much standing as she can, as this will strengthen the bone density in her legs, and helps with bowel and bladder function. She has a wheeled standing frame, so will spend as much time in there as our busy schedule allows!! That’s it for health for the moment!

We went to Prestwick in Scotland for half term, and stayed at Malcolm Sargent House, part of CLIC Sargent Cancer Care. And have been to lots of firework parties.

Update 27th September 2005

It is 2 years since Nicole’s diagnosis!

She is doing well and enjoying being back at school She has several trips to the hospital over the next few months for urology, a spinal unit and MRI in november/december. She is also currently being assessed for a powered wheelchair.

Nicole has completed her disney princess stick book – thank you to everyone who has sent stickers. She has now started to collect pin badges, so if anyone is looking for an idea for a small gift/Christmas present, these would be very popular! Nicole has also enjoyed receiving many postcards from all over the country/world!

Update 22nd June 2005

We saw our spinal specialist in Bristol on Wednesday and he couldn’t believe how well Nicole was looking! He was the surgeon who pinned Nicole’s spine back together, when the biopsy went wrong in September 2003 and her spinal cord was exposed, causing her paralysis.

He hadn’t seen Nicole for almost 12 months, and she has changed a lot since then! He told us that he honestly didn’t believe Nicole would still be with us, but was delighted that she had come so far. He had a good look at her spine without x-raying and said that it looked in good condition. The muscle and fat around her spinal injury is improving and filling in, because when the tumour fell out of her back, it left a big hole.

The paralysis is still permanent, but she appears to be building up the strength in her trunk, which she will need in the future to transfer herself and get around on the floor. She has also had another botox injection in her legs, to help with her standing and stretching exercises.

Update 16th June 2005

We saw Nicole’s Oncologist in Exeter today for the results of last weeks MRI scan and she has told us that there are no problems from her initial look at the pictures. She will have a better look next week, but the signs are good, which is great news!!

She has indicated that the frequency of scans may now be reduced to every 4 or 5 months, which feels like another step in the right direction.

Update 14th June 2005

Just a quick thank you to everyone who has sent Nicole messages, cards and gifts for her 6th Birthday today. As usual, she has been inundated from Post Pals, and has had great fun this morning opening all of your presents, and beautiful home made cards. They really are very special.

She had a great Fairy & Pirate party on Sunday with all of her school friends and we are having a family barbeque when she gets home from school this afternoon. We are keeping a close eye on the weather!

We have loads to update you on, but as you know we have been busy with our trip to Eurodisney, Nicole’s Birthday and lots of routine appointments to Hospital. Nicole is feeling well and we will get the results of last weeks MRI scan on Thursday. I will attempt a full update within the week!

Update June 2005

Thanks to Sue for the regular cards for Nicole and Lauren, Liz Cook is still cheering up the guestbook! Nicole enjoyed the teddy tshirts (Posty Project) and the DVD from Stuart Knight. The first thing Nicole still says every afternoon when she gets home from school is “Have I got any post!”.

We have just got back from 3 days in Eurodisney, and looking forward to Nicole’s birthday on the 14th. We have several trips to Bristol and Exeter hospital this month.

Update 23rd February 2005

It’s just over a week until the next scan on 3rd March. People often wonder how we feel when Nicole has to go to Bristol for her MRI. We found the following poem on another little girl’s website and would like to share it with you.

……………………………………

THE SCAN

A Sleepless Night

Tomorrow our lives could change again
forever…forever…
Will the scan be clear, will the tumor return,
now…or never?…
We try to smooth the ups, the downs.
It’s been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,
forever…forever…

Tomorrow we’ll sit while the bangs and clicks
surround us…engulf us….
staring down the tunnel, waiting for the films
that free us…or damn us…
The probation could last for another three months,
Or find us retreating behind false fronts
That we take out tomorrow to hide the anguish
around us…within us…

Tomorrow our lives could continue on course
or falter…get altered…
It’s amazing to think that one simple test has
such power…such impact…
To the world around us the test dates come
one after another, eventually numb
To the fact that tomorrow could leave us again
bewildered…off kilter…

Tomorrow we hope that the treatments have helped
change things…delay things…
Are there further treatments that we can survive
do we want them?… can we stand them?…
Has the Cancer been killed; does it lie there in wait?
Will it show up tomorrow, or some much later date?
Tomorrow a crossroads, or merely a rest stop
on a journey….to eternity…

Tomorrow our lives could change again
forever…forever….
Tomorrow our world could be turned upside down
tossed asunder…it’s no wonder…
That we dwell in the past, trying to recall the way.

………………………………………..

It is difficult to put it into words how we really feel, but the words in this poem come pretty close. Every scan is a crossroads and we hope that our journey doesn’t take another twist or turn.

Update 22nd January 2005

Nicole and Lauren were inundated with cards and presents from Posters over Christmas- special thanks to her Elves- Nicky and Liz.

In early December Nicole was an angel in her school play and did her family proud. She wasn’t too good over Christmas with colds, tonsillitis and then an infection over New Year, how ever last year Nicole was in the middle of her treatment up in Bristol so they were all just gland and grateful to be home over Christmas without lots of hospital trips.

On the 28th of Jan, Nicole is going to an award ceremony, she has been short listed to 2 in the “child who has shown courage and bravery and lives life with a smile despite their problems”. Good luck to her, we hope she has a fantastic time there 🙂

Update 22nd December 2004

Scans show no tumour growth despite being off treatment for 7 months. They are going to delay the spinal surgery as there hasn’t been any dramatic change, and they want her as strong as possible. She played an angel in her school play.

Update 27th November 2004

Nicole’s new wheelchair – complete with snakes on the wheels arrived in time for her wish trip to Florida.

She met all the Disney characters and had a wonderful time, as did her whole family.

Nicole is seeing the spinal specialist on the 29th of November, to discuss the possibility of full spinal rods and is having scans to check on the tumour on the 1st of December.

Update 13th October 2004

Nicole has started to have botox injections into her legs. She is very much looking forward to her wish trip to Disney in November.

Update September 2004

Nicole should by now have moved into a more wheelchair friendly house, we hope it all went smoothly for them, but they won’t have internet access for another few weeks. She had several hospital appointments and her scans towards the end of August, the initial report is that there is little change in the size or activity of the tumour, which the family are seeing as good news. The spinal surgeon who put the original pins in her spine (when it collapsed during a biopsy of the tumour), was surprised at how far her back has now curved and is worried its at danger of folding forwards or sideways unless operated on. It was originally planned for this to take place in September, but they are now putting it off to the new year when he may have to pin the whole of the spine to stabilise it. She is also going to start a treatment of botox injections into various muscles in the hope it makes her more comfortable, they feel it is very unlikely she will walk again.

After her scans, Nicole went on a trip around the bear factory (Post Pals had organised this), she got to choose 2 bear skins (one for her and one for Lauren her sister), kiss a little heart for each and have them made up for her and then pick out some clothes. She chose a pink sparkly unicorn (Kat also has one of these as they are adorable!), with a swimming costume, sunglasses and hat, and for Lauren a bear in a bikini. Afterwards they went for ice cream at the Haagen Daaz Café. Thank you to the Bear Factory and Haagen Daaz for making this possible.

The address to send mail to is still the same for Nicole

Update August 2004

Nicole is doing well and has broken up from school for the summer holidays. Nicole has a new wheelchair on order, it will be metallic blue with curly snakes on the spoke guards!

We’ve had her school report which was very pleasing, she’s really doing well despite only being there for over half the days and we met her new teacher.

Her parents are very pleased: “I don’t think we could have hoped for better given what she has been through in the last 10 months, and we are very proud of her.”

Nicole went on another wheelchair course she learnt things like tipping the wheelchair to get up and down kerbs, crossing the road, and negotiating ramps.

She has finally had the NG feeding tube removed (hurrah!).

The main concern with Nicole at the moment is the stiffness in her legs. It is becoming more and more difficult to straighten them, making it hard to get her dressed and for her to sit on the floor comfortably as well as other implications.

The family went away to visit family and spend quality time together getting up to all sorts! On top of this they are also looking at moving house. It is likely that they will move before school starts again.

Post Pals have kindly arranged for Nicole and Lauren to visit the Bear Factory in Bristol whilst we are up there on 26 August, where they get to choose the skin of the teddy bear, kiss a little heart before it is put in the bear, see it made, and then take the bears home. This will be followed by a trip to Haagen Dazs Café for ice creams all round. I think I may get to eat too unless Nicole really surprises us!!

Update July 2004

Nicole is doing very well and is at school full time when she is not doing Physiotherapy, Hydrotherapy, wheelchair/standing frame assessments, or Hospital Clinics! She has made some good friends, they just seem to adapt so easily to Nicole’s disability. The other morning, several girls were skipping in the playground, something Nicole used to love to do. Seeing Nicole was left out, her friend Charley got Nicole to hold onto the ends of the skipping rope, whilst she wrapped the rope around her waist, and ran around the playground like a horse and cart!

Update June 2004

Her Birthday Party went superbly well! Nicole looked absolutely beautiful in her Blue Cinderella dress and tiara, and Lauren was quite cute as Piglet also. Around 34 children came to the party, which was a Disney themed fancy dress disco! We also had Elfic the Jester, who put on a fabulous one-hour show of juggling, plate spinning and unicycling, which kept the kids spellbound! Everybody then tucked into a MacDonald’s Happy Meal, with (appropriately) a Finding Nemo toy, to keep with the Disney Theme.

We got the results of her scan at the beginning of June, the tumour has shrunk slightly again, its appearance indicates that the level of disease and swelling has reduced. Our next step is for her consultant to discuss any possible surgery on the tumour. She’s now started hydrotherapy which was hard work but a big step

Nicole is continuing to improve her eating, and has said she is hungry on several occasions. Something that we haven’t heard for a long time! She has had marmite sandwiches for the first time this year, and is also eating crisps and chocolate.

During half term the family visited the penguins and seals at Living Coasts in Torquay, Nicole is enjoying school so much and couldn’t wait to get back after half term. On her birthday school friends joined us and we had a Disney themed fancy dress Disco with Happy Meals.

Update May 2004

May has been filled with going out and about, the family went to Prestwick in Ayrshire, Scotland for a week taking in all the sights of the area.

Nicole had her first full week of school, which is a fantastic achievement so soon after treatment and she is loving it! Nicole had a friend round to play after school for the first time and went on a school trip to the Zoo. She had great fun playing with in the garden and she’s been going to birthday parties.

We met with her Physio, and tried out some standing frames. She’s spent a few days in hospital with an infection following her Chemo.

Update April 2004

Nicole has finished Chemo and radiotherapy, unfortunately there is still a mass showing on her spine after the MRI and its unlikely she will be able to have any more treatment and surgery may not be an option. Nicole’s now allowed to recover from the chemo and will repeat the MRI in 2 months to see if the tumours still active.

We got to spend 2 weeks at home. It has been the longest spell we have been together since last September! If she’s well enough she will go to school next week, she hasn’t been for a month.

Over the Easter weekend Nicole took her new hand propelled trike to the seafront and pedalled all the way to the end of the pier and back. We’ve bought her a handheld DVD player some more Disney DVD’s to relieve the boredom on journeys to Bristol with a borrowed Gameboy.

Update March 2004

Treatment has continued at the hospital and Nicole went to school for a full day which was great. While we were in hospital she sees a teacher for an hour a day and we managed to get out and feed the ducks and go on the swings for the first time since September ‘03.

We did the walk to raise funds for Nicole to go to Disney. In total, 210 children took part in the walk and probably just as many adults.

Update February 2004

We went into Exeter for Chemo, which took 3 days, with more scans scheduled for the end of March.

We have also received many messages, cards and gifts from Postpals.co.uk, which always cheers Nicole up. Thank you to everyone for their support, it really makes a difference.

Nicole has been in a pushchair since being paralysed and this has affected her independence. However, a few weeks ago, we discovered that Sam’s House had a wheelchair that had been donated for families to use. It turned out to be bright pink, Nicole’s favourite colour! As we are still waiting for our NHS wheelchair, the manager of Sam’s House has agreed that we can keep it until Nicole grows out of it. She has become very adept at using it, after only a few weeks.

Update January 2004

The chemo has affected her appetite and she has been losing weight since she came into Hospital. Because she has lost weight since being diagnosed she has had a nasogastric tube put in.

Update December 2003

Nicole started treatment at Bristol every day (Monday to Friday) for 6 weeks, with chemo at the weekends.

The results of the MRI scan show that the tumour had not grown/spread.

Over Christmas Nicole was discharged from hospital, but she had to go in for antibiotics on Christmas Day & Boxing Day.

On New Years Eve 2003 Nicole has her first Radiotherapy treatment.

Update October 2003

Nicole started chemotherapy. We spent a couple of nights at the hospital and were then given a room at CLIC house, a home from home with 10 bedrooms near to the hospital.

Nicole was transferred to Royal Devon and Exeter, much closer to home and it enables one of us to stay at home with Lauren. It also enables Nicole to spend some time at home between treatments and we are delighted when she was allowed home for the weekend of Lauren’s birthday on the 8th November.

Update September 2003

Nicole had MRI scan and we are told that the huge mass surrounding her spine is almost certainly a tumour. We will need to go to the Bristol Royal Children’s Hospital immediately.

Nicole is taken to theatre, to have her central line put in and to have her biopsy. When opening Nicole’s back to do the biopsy, part of the tumour had fallen out and had taken some of her spinal vertebrae with it. The tumour had liquidised the bone in her spine, as well as the surrounding muscle and tissue. She had haemorrhaged badly and was very lucky to be alive. After another hours agonising wait while they patched her up, we were shown down to the Intensive Care Unit, where Nicole would spend the next few days

As there was still little response in Nicole’s legs and feet, another MRI scan showed a large blood clot where the tumour had been, which was pressing on her spinal cord. She had further surgery to drain the clot, and her spine was need to be pinned with 2 x 4 inch Titanium rods, screwed in with 8 screws. Nicole spent the next few days in Intensive Care. About half of the tumour still remained on the inside of her spinal column and she would have to start chemotherapy treatment, we were told that she had a Fibro Sarcoma tumour. It had not yet spread to any other organs and was not in her bone marrow.

A Fibro Sarcoma is a very rare and aggressive tumour, usually found in adults, with 80f cases found in the knee. It is almost unheard of in infants.

Update June 2003

One night while getting Nicole ready for bed, we noticed a small lump on her back Our GP referred us to the Paediatric Consultant at the local hospital, he who felt that it was likely to be a fluid sac or fatty lump. Nicole carried on life as normal, enjoying the bouncy castle, skipping rope and hula-hoop, she had been given for her birthday. The results of an ultrasound scan of Nicole’s back but they were inconclusive.

Story written 2007

Niamh has had various health problems since early childhood. She was born with a condition known as CHOANAL ATRESIA which meant that at birth she was unable to breathe through her nose. This meant that at one day old she needed surgery to help her breathe. Over the next 3 and a half years she had 9 more operations on her nose and was eventually able to breathe through it.

At that time we thought that Niamh had had her share of health problems. However in November 2005 when she was aged 5, she woke up one morning completely blind. We spent several weeks in hospital where they diagnosed a type of optic neuritis that basically means inflammation of the optic nerves. At the same time they also found a type of brain tumour called a PINEAL GLAND TUMOUR. This was monitored by the doctors and isn’t requiring treatment at present. They were unsure if this was connected to the vision loss.

Niamh returned to mainstream school and started learning Braille in January 2006 and has coped well with her problems. Her eyesight did begin to improve but in May 2006 she had a second attack of OPTIC NUERITIS.

In August 2006 she suddenly developed paralysis of her lower limbs and was readmitted to hospital. The doctors then linked her vision problems with this paralysis and diagnosed a very rare type of MS known as DEVICS DISEASE. Her condition has gradually improved after a relapse and further paralysis in October. She has made good progress; she is back at school and fully mobile again. She is on a cocktail of drugs to keep her condition under control including steroids and immunosuppressants. She has regular check ups and fortnightly blood tests (for which she is really brave.)

It has been a very scary few months for us but she has coped so well and adapted to everything. She truly is a little star and an inspiration to us all.

Update 6th March 2011

Sorry we haven’t updated for quite a while. Niamh, Kiera and Dylan enjoyed a great Christmas. Thank you for their lovely cards and gifts.

Niamh is doing well at present and has been relapse free for 4 years this month. We can’t quite believe that, it is amazing. We still have ups and downs and the horrible medication but it is quite an achievement. Thank you all for your ongoing support.

We are going to see Justin Bieber in a few weeks and the girls can’t wait.

Update 2nd November 2010

Niamh didn’t have a very good October and spent the early part of the month in and out of hospital. The good news is that she is now well and recovered from a very bad viral illness which the doctors initially thought was a relapse.

Niamh was getting very tired and almost constantly sleeping as soon as she got home from school each evening for around 2-3 weeks and this is very unlike her. This led to lots of the usual tests, investigations and blood samples. Niamh, as usual, was amazingly brave. A great achievement was that Niamh had her very first MRI scan whilst awake. She has had all her previous scans done under general anesthetic. This time though she managed to do it whilst awake. I am not sure who was most scared (me, her mum, or Niamh). After getting very upset and taking medication to try and sedate her (which didn’t work) we eventually got the scan done. She was very brave (it is very noisy in the scanner, I thought it was about to blow up) and she needed to be very still for long periods of time. She was so proud of herself afterwards and has said she wouldn’t be worried if she had to have another MRI scan. The good news was that there was nothing on the scan to indicate a relapse. She also developed a nasty itchy rash which we later discovered was part of the viral infection.

As well as all this, Niamh’s granddad passed away last week. She has been very upset about this as it was only 11 months ago that she also lost her grandmother, so we have had a pretty tough few weeks.

I am travelling to LA next week on Niamh’s behalf to attend a conference regarding NMO, the rare disease that she suffers from. It will be very exciting to meet others with the same illness. The incidence in 1 in 100,000 current cases and new cases are 1 in 1,000,000, so it’s pretty rare and even more unusual in children than adults. It is a great opportunity for me though and has been funded by The Guthy Jackson Charitable Foundation in the USA. I will update you when I get back.

Update 1st October 2010

Niamh and Kiera enjoyed a great birthday – thank you for their lovely cards and gifts.

Niamh is doing well at present. Her recent eye check up showed no change which is great.

Update 15th August 2010

Niamh loved her Post Pals pillow case of Hannah Montana. It has pride of place in her newly decorated Hannah Montana themed room.

Niamh’s ct scan for her nasal problems was clear, so her doctors are trying a lose dose of antibiotics for several weeks to see if this helps. Niamh spent a day at the children’s hospital in Oxford during the school holidays. She wasn’t very happy about losing a day of her holiday to visit the doctors. The visit was worthwhile as she was reviewed by a specialist NMO team who will be contributing to her care in the future. She also had a very new type of eye scan that may help in the future should her eye sight deteriorate. Her antibodies for NMO in her blood were also examined and as usual she was very good about getting her blood taken – a huge 5mls was needed which is quite a lot.

We can now relax now and think about our holiday. September will involve a few more hospital appointments though.

Update 14th June 2010

Niamh has continued to do well the past few weeks. She still has lots of blood tests, investigations and doctors’ appointments. She is due to have a ct scan on her nose and sinuses next week as she’s been having some nose problems again. She has just had lots of bloods done that need a repeat in 2 weeks as well, but she is always so brave.

She is working hard in school but really looking forward to the six weeks school holidays. We are visiting friends in Arizona for a few weeks in August and can’t wait.

The success of the Russell Howard show has really shown in the increase in mail etc that Niamh has had. Thank you all for taking the time to help in this worthy cause. Niamh has had so many lovely gifts, emails, cards and letters the past few months, there are too many to mention, from far and wide. She loves to read through her weekly post as it arrives and it always brings a smile to her day. She particularly loved the Zookey sock teddy that came from New York, thank you Susy for that.

Update 31st January 2010

The new year is here and we hope Niamh continues to be in good health for the rest of 2010.

Niamh is doing well and has a few doctors’ appointments and investigations planned in the next few weeks, so please wish her luck.

She has been working very hard in school and is now learning touch typing as well as Braille.

Thank you for the lovely art set and cards that Niamh had to cheer her up in January.

Update December 2009

We had a wonderful Christmas. Niamh had lots of wonderful gifts and cards from Post Pals. Thank you all for every single one as she loves reading them all and opening the gifts. Thank you to our elves as well. The bath bomb polar bears were a great hit although it was sad to see them melt and she also loved her audio cds. We opened her gifts on Christmas Eve as we always do. She has some great surprises from Santa as well.

We went to see Miley Cirus (Hannah Montana) in December and we had a wonderful time. We were very lucky to be moved to really good seats so Niamh was able to see a little.

We hope that the New year goes well for all our Post Pals friends. Happy New Year.

Update November 2009

November has been a very busy month for Niamh. It was her brothers first birthday and she really enjoyed this and loves having people around to visit.

She is still doing really well health wise but we just wish she would gain some more weight. We have a few check ups to come and a visit to the Dietician this month.

School is going really well and Niamh is learning to touch type as well now.

Update 15th September 2009

Thank you everyone for Niamh and her sister Kiera’s lovely birthday wishes and goodies.

Update 5th September 2009

Hi everyone. I have had a lovely summer and I spent most of it at my nanny’s caravan near the seaside. So I have had lots of fun and fresh air. I have been well and I’m due to see my doctors again soon. I have moved to junior school as well.

I am very excited as it is my birthday soon on September 14th and it is Kiera’s on the same day. We can’t wait. I am going to Legoland next weekend with tickets from Post Pals – THANK YOU! Then I will have a party at home.

We are also going to see Hannah Montana in concert in December and I am so excited.

Thank you for all my lovely post and I loved the Jacqueline Wilson audio book CD I was sent. Thank you so much.

Update 1st July 2009

Niamh has been unwell with shingles but is now recovering from it.

She is loving the weather we are having and is looking forward to a few weeks off school and enjoying the summer.

Thanks for all her post which she really enjoys getting.

Update 1st April 2009

After doing so well for such a long time, Niamh has had an eye test which shows a slight deterioration in her sight. Her doctors think this means she has had a slight relapse. So next week in half term she will be in hospital getting intravenous steroids for three days. She isn’t looking forward to this so will need some extra smiles to cheer her up. The steroids have horrible side effects as well and she hates the needles.

Otherwise she is doing really well and loves her new baby brother, Dylan.

Update 14th January 2009

Niamh had a wonderful Christmas. She did become unwell and spent a day in hospital on the 28th December, but recovered with antibiotics.

Both Kiera and Niamh would like to thank you all for the lovely gifts and cards. We have a tradition now of having our Post Pals Christmas on Christmas Eve and open all the postie gifts then.

Happy New Year to you all.

Update 2nd December 2008

Kiera and Niamh are very proud to announce their new little brother, Dylan Samuel, just in time for Christmas. He was born by c-section on the 24^th November. He is a perfect addition to our family. Niamh loves him to bits and she’s a proper little mother and helper.

Update 24th October 2008

The girls had a lovely birthday, thank you all so much for their lovely cards and gifts (see below). We also went to Thorpe Park for the day with the tickets given to us by Post Pals and had a wonderful day.

It is now only just over 4 weeks until the girls’ new brother or sister arrives. Mum is having a C-section on 24th November and we are all very excited and busy preparing.

Niamh is still on all her meds and doing well, but we still need to fatten her up a bit.

Special thanks to, KIM BOWS, HELEN BRIELEY, JULIE BARRET, K WINCH, LINDA B , ST MATHEWS SUNDAY SCHOOL TORQUAY, KATE DEE, SARAH KIDD, AND JENNY PENZANCE.

The girls received some lovely gifts and cards from you all, thank you.

Update 7th September 2008

Niamh is doing well and looking forward to school.

She is also looking forward to hers and Kiera’s birthdays on the 14^th September. We are doing the Post Pals Thorpe Park Trip as part of their birthday treat.

Thanks Post Pals!

Update 7th August 2008

Niamh is continuing to do well health wise and our doctors appointments are 3 monthly now.

Niamh and Kiera are enjoying the summer holidays even if it is rainy.

Their mums bump is getting big and they are getting more excited.

They both have birthdays coming up next month as well and can’t wait.

Many thanks to you all for your cards and gifts, especially Katie Dee and Jennifer Castle.

Update 8th July 2008

Niamh is doing well. We have been to parents evening and were very proud to hear how well she is doing with her Braille. Niamh is learning Welsh Braille, so if there is anyone out there who does Braille in Welsh we would love to hear from you.

Many thanks to you all for Kiera and Niamh’s lovely gifts and letters this month. Special thanks to Katie Dee as Niamh loved Pooh bear and also to Jennifer Castle for all your lovely letters. Keep up the good work.

Update 6th June 2008

We have returned from Florida after having another amazing holiday there. If you get the chance go it is amazing. I think we enjoyed it better this year as Niamh was a lot fitter and feeling better than during last years trip. We had a scare prior to going as Niamh was in hospital for a few days with an infection, but luckily she still went and was well there.

She was a very happy girl in Florida and we got to meet lots of characters (including Minnie Mouse) and a few more dolphins (her favourite).

Health wise Niamh is doing okay and still taking her immunosuppressant meds. At present we are really struggling with her weight, she is seeing the dietician but losing weight. It’s very hard to encourage her to eat. Other wise all is well.

Another important bit of news is that we are expecting a baby sister or brother for Niamh and Kiera in November and they can’t wait!

Thanks you to Katie Dee and everyone who has sent cards and gifts to both Kiera and Niamh in the last few weeks. It is always appreciated.

Update 9th April 2008

Niamh has had a very good few months and she has finally stopped her steroids this month. This will be the real test to see if she remains relapse free without steroids and only her immunosuppressants, so please keep everything crossed for her.

We are also planning to revisit Florida in early May as the girls enjoyed it all so much last year.

Thank you for all the post.

Update 5th January 2008

Niamh had a wonderful Christmas and really enjoyed getting her posties along with her sister Kiera. It really meant a lot to them both to receive all the wonderful gifts and cards from their Post Pal friends. We had an early Christmas where they opened their Post Pal gifts on Christmas Eve, which they thought was wonderful. Niamh was very impressed with the cards she received from Rudolph and his friends.

Niamh has made really good progress this past year, much better than we could ever have hoped for. She continues to take immunosuppressants and is on a low dose of steroids. She is growing very slowly and we are trying to encourage her to gain weight, although her appetite is poor. We are hoping to stop the steroids in another 10 weeks, fingers crossed.

She will be in hospital this week for a day and needs to have a needle in her hand for a few hours for tests to make sure her body hasn’t got dependent on the steroids. So we are hoping that will go well.

Wishing everyone a happy and healthy New Year and thank you all again for your kindness. Special thanks to Wendy, Andrew, George and Anna Pettifer from Australia, Despina from the USA, Maria and Michael, Jenny, Helen, Jenn, Martin, Jackie and Jamie, Laura H, Ruth and also Craig and Abby for their lovely presents. More thanks to Julie Barrat and family (Niamh loved the seal) Maria Carney, Emma Hoole and Helen Brierley.

Update 15th December 2007

Niamh is very excited about Christmas and can’t wait for all her post pals cards and gifts as we are saving them up for her. Thanks to everyone xxx

Update 5th November 2007

Niamh is doing really well and looking forward to Christmas arriving. She is already making her list for Santa. She loves getting her posties, so keep up the good work!

Update 11th September 2007

Niamh is still doing well and looks forward to school in September. She is also looking forward to her and her big sisters birthday, which they share on September 14th.

Thank you all for your cards and smiles.

Update 1st August 2007

Thanks again for all our lovely post pals gifts, love Kiera and Niamh.

Update 5th July 2007

Niamh continues to do well. Her recent MRI scan was stable and she is weaning down her steroids. She is looking forward to her school holidays as well. Thanks to all our post pals.

Update 6th June 2007

Niamh has had a wonderful month after her holiday in Florida. Niamh has been really good with yet more tests and investigations at the hospital. June 14th she is to have an MRI scan to check the pineal gland tumour and the areas on her spine caused by devics. She will be in hospital for a day for this. Wish us luck please.

Thanks to everyone, especially Kat, for all Niamh’s post and the wonderful mystery gift for her sister Kiera.

Update 20th May 2007

Niamh had a fabulous holiday in Florida Disney World. It was a well earned rest for us all. We met all the princesses and had breakfast with them. We also went swimming with dolphins which Niamh loved.

We have a consultant review next week which will probably involve a change in medication and a few more tests for Niamh. We also have a CT scan booked for 14th June so think of us then. She has to have a general anaesthetic for that. We have lost count now of how many times she has been put to sleep (at least 15) and she’s always so good.

Thanks Julie and Mari for remembering us again and to all our overseas posties.

Update 11th April 2007

Niamh has had a good month and is looking forward to her visit to disney world on the 29th of April. Her vision seems stable and pretty good at the moment. She is learning everyday to make better use of her vision and amazes us daily with her abilities. We have an appointment tomorrow with a Professor from Great Ormond Street who is visiting Wales and is reviewing Niamh’s case. We also have a check up with the ophthalmologist this week.

Thank you to Julie and Mari for your lovely cards and thank you so much to Corrine for the fabulous gifts from the USA, the girls loved them.

Update 1st March 2007

Niamh is doing well at the moment; she has loved getting her post. She is going on holiday in April to Disney Land Florida.

Matty is on the “Moved On” page as he is doing really well, and his family are following their dream of moving abroad, and are now living in France.

Story written 2004

Matthew was diagnosed with AML in June 2003, he had a bone marrow transplant in September 2003,which was donated by his sister Emma.

We spent 5 months staying in Bristol Children’s hospital and were grateful of the support given by CLIC house. He also needed surgery after fungal infection damaged the palate of his mouth. This problem will be corrected at a later date.

Matt has now been diagnosed with the Bronchiolitis obliterans organizing pneumonia (BOOP), which relates to the graft-Versus-Host disease in the lungs. He’s doing well and still needs to go to the hospital for treatment and his reaction to the transplant is continually being monitored.

Update December 2005

Matty continues to do well, and is enjoying his life in France (as is the rest of his family), he his last scans were clear, his hormone tests show improvement so his Hydrocortisone might be reduced, best of all Matty and Emma are just enjoying being kids.

Update 15th February 2005

Matty’s surgery went well; he went home the same day.

It is hoped this is now the end of his very long journal in his battle against cancer. Matty and his family are moving to France this week so will no longer be receiving mail from Post Pals. We wish his family all the best, and a very happy life in France.

Update 1st February 2005

Matty is not due back to Clinic until MAY! Reaching 3 month clinic appointments is a huge milestone, which everyone is very happy about. They are confident his GVHD has been and gone! Matty needs to stay on a maintenance level of hydrocortisone as his Adrenal Gland tests show little production of national steroid-this is probably linked with the problems Matty had with his Sodium lever at the beginning of treatment.

Matty had his surgery to repair the hole in his mouth, it was hoped that this is the end of his long journal with his health, how ever it didn’t work so poor Matty is having more surgery on Friday, they will use stronger stitches- if it doesn’t work then he will still have to wear his plate and have it operated on in about a years time. We will keep our fingers crossed it works.

On a sadder note, Matty’s good friend Dave passed away, he is understandably upset at losing another friend.

Update 31st December 2004

Matty is still doing well, and had a good but quiet family Christmas. He is due to have CT scans this week. Sadly a friend he made while in hospital is very ill, Matty is understandably upset to be loosing another friend, so I’m sure a little tlc would be nice.

Update 8th December 2004

Matt is now back at school after his op and is doing well.

A lot has happened this week;

Tuesday – Meeting with the Endocrinologist from Bristol. Well, it seems that the test results showed that Matt’s Adrenal Gland is not producing ANY Cortisone! So now they are reducing the Hydrocortison, which they seem optimistic that will KICK start the gland again?

Wednesday – Clinic- As per usual Matt wouldn’t bleed! After three attempts and by this time Matt was Tackacardic and sweating! It was decided that we should come back to the ward on Friday for a re-try! The meeting went well, and the consultant is pleased with Matt’s progress.

Friday – Meeting with the Oral Surgeon, he is confident that he can fit Matt in for Corrective Surgery after Christmas! It will involve – wait for it… cutting the inside of the roof of Matt’s mouth and pull the tissue across and then… cutting a semi-circle around the roof and with a cut up the middle and pulling it across the hole!

Matt is fine about all this surgery talk and can’t wait to get rid of the mouth plate that he has had to wear for the last 16months!!! You know what they say “No Pain, No Gain”.

Update 16th November 2004

Matt had to go into hospital on Thursday to be circumcised, poor little chap, as if he hasn’t been through enough, but past treatment has caused it! He was let home the same day, although in pain is recovering well. He will be off school for 10 days.

Update 5th November 2004

ll, the meeting with the consultant went really well. Our appointment was at 1.30pm but as usual we didn’t see him until 3.20pm! This is normal though!

We were told that Matt’s cells have done the job they were meant to do.
They have conquered the BOOP (GVHD)! Also Dr Goulden was positive that the cells have also beaten the Leukaemia!! Matt was jumping with Joy!!

He has KICKED AML’S BUTT!!!!

As to the medication, he will stop taking the Cyclosporin (anti-rejection drug) on the 17th November. We have to watch Matt, we don’t want the BOOP to return.

The Voriconozole will be stopped soon after and the Aciclovir will be stopped in the New Year as there is a great risk that Matt will develop shingles! Plus he might need hospitalisation with I.V’s.

Matt had his Endocrinology Tests on Monday, after having to have a second canula inserted as the first blocked. The results showed that the Adrenal Gland (gland which produces the bodies own Corstisone) isn’t functioning properly. They found traces of Calcium in the Gland and this means that Matt will need to be on Hydrocortisone permanently. He said “it’s better to stay on it than to stop it”.

They are going to re-run the tests to confirm this information. The Consultant thinks this stems from when Matt was first diagnosed, he had SIADH (sodium deficiency).

Matt is now down to monthly blood tests when he goes to the Clinic and we see Dr N Goulden (Consultant from Bristol) early February.

Matt has so much energy he is certainly getting back to his former self. He is swimming every weekend and now he is joining his old Gym Club.

Matt is due to see the Oral Surgeon on the 3rd December. Matt has been seen by a specialist for the Phimosis (Balonitis). It may be that Matt needs surgery (down below) which will hopefully be done before Christmas.

Update 26th October 2004

Mat is still doing well. Endocrinology tests on 01/11/04 and seeing Consultant from Bristol on 03/11/04.

We are seeing Moved On Pal Jamie on Tuesday and Pal Nicole.

Also on Wednesday we are catching up with Dave from Plymouth who we met in Bristol. Dave has invited Matt to go to the Marines Base with him!

All that UNIFORM!

Matt has just received a letter from Make A Wish and they are granting him his second wish of Meeting Robbie Williams!!

His first wish was for a Tropical Family Holiday, but their insurance company declined Matt’s Application?

He was gutted but R.W is certainly his Favourite!

Update 8th October 2004

Some great news for Matty; he no longer has to go to the hospital for weekly blood tests!! They will now be done once every 2 weeks at home by a CLIC nurse.

September the 24th saw the 1 year anniversary of Matty’s transplant. The consultant had told them if Matty got to 6 months they would be happy, if Matty got to 1 year, they would be optimistic, so it’s a huge landmark for them. The family celebrated by going bowling and having a take-away from Asda as that’s what Matty and Emma wanted to do.

They are waiting for an appointment to find out when Matty will have an operation to repair the hole in his palate which was caused by the Aspergillus, and also to see an Endocrinologist to check his adrenal status.

Matty’s mum says he is living life to the full at the moment, and enjoying trying to get back to a “normal” way of life, he is currently enjoying school, playing football, and started Cubs.

A photo of his trip to RAF St Mawgan, organised by Post Pals in May.

Update September 2004

Matty has recovered well from his 2 and half hour surgery in France to remove his Hickman line (other wise known as Mr Wiggly). His CT scans showed no change (which is good), and the ENT department no longer need to see him as they feel the Aspegillus is no longer active in his sinuses but they are waiting to hear from the ENT surgeon as to when they are going to repair the hole in his mouth. His steroids are being reduced, and he will soon be having his childhood vaccinations.

The past 2 weeks they have had lovely weather in Cornwall, so Matty and his sister Emma enjoyed breakfast on the beach every day, and lots of time spent swimming and surfing in the sea every day.

This week Matty and Emma returned to school, they are both happy to be back, we wish Matty the best for a far better school year than last, also for his C2C ride with his family in aid of the Anthony Nolan Trust.

Update August 2004

Matt’s CT scan showed no different to the last!

Matt had his Lumen Line out in Limoges Hospital whilst on holiday!

We have a Consultants meeting on the 01 September, we should find out when they are planning to stop the dreaded Prednisolone and an ENT review on the 02 September, hopefully we will know when they will repair the hole in the Palate?

Matt is doing really well and is looking forward to going into Year 5 in September.

Thanks to all the team at PostPals and we hope that Kat is making an improvement.

Matty couldn’t even have a holiday away from hospital it seems. He and his family went to France, and he was admitted to Limoges Hospital on with a bad line infection which they then had to remove (it’s been in for 14 months).

And then the Post Pals team received this message:

Hi From Windy France!
Thanks for Matt and Emma’s cards we received them today.
Matt had his cannula out today and no more trips to Limoges Hospital as the antibiotics have stopped!
He is like a different boy now he doesn’t have the central line, but what a way to get it out!! 5 days in a foreign hospital.
The staff and Drs were brilliant.
Back home on Tuesday, then more hospital trips to fill them in on what Matt’s been up to!
Love to you all
Jackie

Update July 2004

Another Friday night was spent in hospital! Matt was putting his bike away in the garage and went to shut the door, but he couldn’t reach so he pulled the side strut of the door which then scissored his left little finger! They had to put Matt under with a GA! On doing this they found that he had damaged the Tendon! So they had to cut down both sides of the finger and repair it. He was down in emergency surgery for two and half hours!!

He has now had the plaster and stitches removed and is getting on well with the splint, back at school and is doing his work on a computer as he is left handed!

Update June 2004

Matt’s CT scan showed some questionable areas, and he is back on the steroids as mentioned before. He has so much more energy!!!

Matt saw the ENT guy again Monday, he looked up his nose with a microscope eeeakkkk! But he was pleased with what he saw, as from the scan they thought Matt needed his sinuses flushed as he had sinusitis, which evolved having a General Anaesthetic. The consultant wasn’t sure if the guy who puts them under would do it, because of the steroids that he is on and also the GVHD in the lungs. But the nasal passage looks better than before so we don’t need to see him for 6 weeks!!!

His counts are good, a little high but that’s down to the steroids.

A trip was arranged to visit RAF St Mawgan at the beginning of June, we had a tour of the School of Combat, Tour of a Helicopter, lunch in the Officers Mess, and visited the Pilots of 203 Squadron. Matty and Emma had great fun using the camouflage paint.

The RAF trip was excellent and a BIG thanks to POST PALS for arranging it!

Update May 2004

Well the results of the scan showed a few suspect areas again! Nick the consultant that he wants Matt to go back on the Dreaded Steroids. As far as we can see the leukaemia is under control which is a good sign as Matt’s counts are stable.

Matt has managed 4 full days at school and is really enjoying it. He even managed to join in the P.E activities!

Update April 2004

We would like to thank all at Post Pals for all the support and post which Matt receives, it really does cheer him up.

Matt is doing really well, no-longer needing to go to Hospital daily. The CT scan showed an area at the bottom of the lung which they say is due scarring, hopefully it will correct itself but there could be permanent damage. The have been reduced and his weight is slowly moving down again, just blame the STEROIDS for his mood swings!!!

All the breathing results came back ok, but again the exchange value of the lungs weren’t as good as they should be but again they could get better, they said that Matt won’t be able to become an Astronaut or do deep sea diving!

Matt went to school for the first time last Monday after Easter and stayed all day, he had a great time catching up with all his school mates and he settled in with his new teacher fine! As he was in year 3 when he left and now he is year 4.

Luke has been in Southampton General Hospital for 6 weeks now, initially with rotavirus, then an autoimmune response reaction, and then what we think was an unknown infection. However, for the last few days he has had soaring temperatures coupled with increased pain in his stomach. We have now had the diagnosis for this which potentially could be very bad news. It now seems that Luke has significantly raised levels of EBV and a CT scan this morning showed that he had a number of raised lymph glands across his body. This could just be EBV or could indicate possible lymphoma which would be a worst case outcome. The combination of the temps and the raised lymph nodes means that this is a definite possibility.

So it looks like the plan is to send us back to Great Ormond Street Hospital in London for a full review and to agree treatment.

It seems that as we get over one hurdle, so we should face another and we would value your prayers at this time.

Story written 2006

Lucy was born with very complex congenital heart disease which was diagnosed when she was about 18 hours old. She underwent two open heart surgeries, the first when she was 2 days old and the second when she was about 6 months old. She suffered total heart block as a result of this surgery and had to have a permanent pacemaker implanted a week after the surgery. This was replaced in January 2005.

She had to have major stomach surgery in November 2002 as she suffered from malrotation of the stomach and intestines due to one of her heart conditions. She doesn’t have a spleen either due to this particular heart condition.

Lucy was always supposed to have had a third open heart surgery around the time of her 5th birthday. Alas, this was not to be because her heart would have never been able to cope. She was hence in heart failure.

In September 2005 it was suggested that Lucy be referred to Great Ormond Street Hospital to their heart failure team where her care would be taken over. We were actually referred to the Transplant Team there and went for assessment in December 2005. The Team deemed her suitable for transplantation and she was placed on the Active Transplant List on 16th December awaiting a heart.

Lucy waited a long time for her heart, but during the Summer of 2006 was very lucky to receive the all important call that a suitable heart had become available. She recovered from the surgery very quickly and made a good recovery.

Unfortunately Lucy is back in hospital and will be for at least another 2 weeks, having been there for the last 12 days. Her donor was positive for a virus called cytomegalovirus or CMV as it is more commonly known. She is very poorly at the moment and at the moment we are living day by day awaiting the next set of blood results. The virus levels haven’t been coming down in her blood so she has had to be changed onto a stronger drug which is more toxic. They are having to watch her kidney function as well as checking things like her eyes for damage.

Update 11th February 2008

I think it’s only fair that Lucy moves on from Post Pals. If things change in the future with regard to the high white cells and lymphocytes then I will let you know. There are so many poorly children out there who need the smiles that post can bring to them.

Thank you so much to all of the team and everyone who has written and taken the time to send things to the children. You really have made a difference.

Update 29th January 2008

Lucy’s white cells and lymphocytes are still high. She’s having more physio than she usually has and is going to start hydrotherapy too.

Thank you this month for the birthday card for Alice and the letter for Lucy.

Update 2nd January 2008

Lucy, Alice and Ben would like to thank everyone for all of the lovely letters, cards and gifts that they received over Christmas. They are very, very lucky children.

Update 20th November 2007

Lucy had her annual review back in September. Everything was good, so the Hickman line came out and she had a reduction in her MMF which is one of her immuno suppressants (they halved the dose). CMV hasn’t been detected since May 22nd of this year – day easily remembered because it is Lucy’s big brother’s birthday.

She’s been suffering from a bad cold/cough since the second week in September, surprise surprise, not long after she went back to school. So during the regular blood tests she’s been having, an elevated white cell count had been noted and of course was monitored. It went up to 32 at one stage, coupled with that she’s had quite a high EBV (Epstein Barr Virus) level, which again has been monitored.

We had a phone call from her Transplant Unit asking us to take her up for investigations. They wanted to do a scan and chest xray to look for swollen or enlarged lymph nodes deep within her body. Thankfully none were found. The consultant did mention that he wanted blood films made and if anything untoward was found, he said that a bone marrow biopsy may be necessary. We’ve been beside ourselves with worry as we knew her lymphocytes were high – but then that’s a parent’s job isn’t it?

Anyway, the general consensus of opinion was that it may be her MMF that was causing the irregularities in her blood. She was to have her MMF dose halved again. Blood tests will be done at the beginning of December to check the status of the white cells and lymphocytes. Fingers firmly crossed that it is this that is causing the problem and NOT anything more sinister.

Don’t tell her I’ve told you this because she doesn’t yet know, but she’s not allowed to be ill because we are going to Lapland for 4 days in December… all 7 of us!!! Can’t wait, and certainly can’t wait to see the little ones’ faces when they meet the big man himself. This trip was given to her after her appearance on the Sharon Osbourne Show last year where she was promoting organ donation. Unfortunately she was too ill to take it last December, but the kind travel firm agreed to carry the trip over to this year.

We had a mad dash to A & E with her on Sunday evening. She had been making pretend dollar bills after watching Spongebob with her little sister! Unbeknown to her she had cut the top off her left thumb… with a pair of BLUNT PRESCHOOL SCISSORS of all things. Her daddy is a first aider, so knew exactly what to do, whilst I nearly passed out on the floor! I can do everything else – can watch her be intubated/extubated, watch whilst they try to put a line in etc, but be damned if I can deal with that amount of blood and a nasty looking thumb. The scary thing is that she didn’t even know she’d done it and that it didn’t hurt her at all! After sitting in A & E for half an hour (which is good for them), we’d managed to stem the bleeding with pressure. One of the senior nurses dressed it and told us that we could go, but to get the dressing changed on Thursday of this week.

Thank you to everyone who has continued to send the children cards, because I have been totally rubbish at keeping you updated on how things are going.

Love to everyone xxx

Update 24th April 2007

Lucy is continuing her once daily IV’s and will be for at least another 6 weeks. The CMV is being rather problematic and at the moment everything is very much a case of waiting to see what happens. She is going to Great Ormond Street for a heart biopsy and coronary angioplasty on 18th May. If there is no rejection then her anti-rejection meds may be reduced. If all goes ok with that then they may stop her Foscarnet IV treatment. Hopefully her body will keep the CMV in check, but we have previously found it hasn’t, so no one can be absolutely certain that this will be the case.

Thank you for her lovely parcels that she has been receiving and thank you to whoever sent her the Easter Egg – she won’t eat it!

Update 26th March 2007

Lucy has developed the CMV again. This is her 3rd infection since her transplant last year and it was decided to put a more permanent line in as she is struggling with the amount of needles and cannulas that are needed. She now how a tunnelled line in situ which will probably stay in for a couple of years. She has named it “Mrs Wiggly”. Lucy is part way through another 3 week course of Foscarnet which is bringing the virus levels down nicely. We just hope that we get a reprieve for a while after this latest bout of the virus as we are all totally worn out. As soon as the virus levels are down she needs to go into Great Ormond Street for a heart biopsy (to check for rejection) and a coronary angio (to check whether the CMV is causing narrowing of the coronary arteries). Fingers firmly crossed that these tests reveal nothing sinister.

Thank you to everyone for their kind wishes via email and for her letters, cards and gifts – they are very much appreciated.

Update 2nd February 2007

Just to let you know that Lucy will be in hospital for one more week, so that takes us up to next Friday. Her CMV levels are lower than they were last week, so that is a good sign.

Update 18th January 2007

Lucy has to go back into hospital for more IV’s to clear the CMV as it has gone high again. We are looking at 3 weeks.

Update 30th December 2006

Thank you to everyone for the Christmas cards, especially the reindeer cards!

Update 20th December 2006

Lucy’s virus levels have dropped dramatically – now down to 16,700 which is absolutely brilliant news. Her biopsy date has been changed to 26th January which means that she will be able to enjoy her sister’s birthday party now. She is very much looking forward to Christmas – as are we – and is looking incredibly well. Infact she looks the best we have seen her for a couple of months. We are enjoying every minute of the run up to Christmas.

Thank you to everyone who has been sending Christmas Cards, she has really  enjoyed receiving them.

Merry Christmas to everyone.

Update 10th December 2006

Lucy’s CMV levels are still causing concern. She went to GOSH on Wednesday. The consultant there can’t understand how she can be so well with the levels so high.

She has to go in for a heart biopsy and coronary angioplasty on 5th January.

The CMV can cause early onset of coronary artery disease so thus doing this test whilst she has the biopsy. It would have been checked at her yearly review otherwise.

She has to have regular blood tests done to check the levels and is due back to Southampton on Monday for another. They have put her onto an oral drug, valganciclovir. If this doesn’t work then we are looking at having to go back in for IV’s, which will mean her being in over Christmas. Hoping and keeping fingers crossed that the oral drug works.

Anyway, hope that you are all well and thank you so much for everything that Lucy has received.

Update 30th November 2006

We went back into Southampton General yesterday for a repeat blood test. They are keeping an open mind because it may just have been the results from a rogue sample. The Registrar concerned has instructed us to be back at the hospital today, with a view to admitting Lucy yet again. It’s a blow because she will spend her 7th Birthday in hospital and I had so hoped she would be at home.

Thank you to Kate for the lovely homemade cards and thank you to Becky for the lovely book of poems. Thank you also for the friendship bracelets received.

Update 24th November 2006

After giving her consultant some initial concerns, Lucy had made a good recovery from the CMV and is home now after 4 weeks in hospital. Thankfully the CMV would not have caused her to reject her heart, but the doctors concerned were keeping a close eye because she presented with D & V, so there were worries in the beginning that she wasn’t absorbing her anti rejection medications properly. There is still sign of the virus in her blood, so she is returning to hospital twice a week on a Monday and Thursday to have blood tests to check the levels. Hopefully, with time, the virus level will drop to zero. She is on a drug called valaciclovir and has been since she was transplanted. The dosage has been increased slightly to help bring the level back down.

Lucy would like to say a big thank you to everyone for their lovely cards and best wishes that have been received since she has been in hospital. I would personally like to thank everyone too, especially the people who have thought of Alice and Ben and sent them cards – they both found it really hard having Lucy in hospital this time. Receiving some post themselves really put smiles on their faces! Also thanks to the people who have emailed and have left messages on her guestbook, we will get round to emailing you all individually I promise.

Lucy is due to go back to school soon for the first time since July of this year. It will be just mornings to start with and we shall see how she goes. There is then her birthday to look forward to – one that we didn’t think we would be celebrating this year, but thanks to her Donor and their family we will be and it will be extra special.

N.B. When sending letters/cards or gifts in the post to Laura, please could you put your return address as Laura would like to reply to as many as possible.

Story written 2005

When Laura was born she was listless and bruised. I insisted on Laura being taken upstairs to the Special Care Baby Unit. Laura died on her way up there!! The first of several times.

Laura was put on Oxygen, a drip and had to have various blood tests, scans, etc. to find out what was wrong with her. She was diagnosed with an Overactive Pancreas, which was producing too much Insulin and stripping her blood sugar – HYPOGLYCEAMIA – causing her to fit and lose consciousness.

We were told to prepare for the worst, so Laura was christened in Barnsley District General Hospital. On release we were informed that Laura had a Heart Murmur.

The next 12 months were even more traumatic.

February 95, Laura was diagnosed as having severe Rickets so was admitted to hospital again for further tests.

Nearly 2 weeks later, the day before her first birthday, we came home even though the hospital didn’t want us to.

6th March 1995 the hospital rang to say:

“Can tell you that Laura has a Serious Kidney Problem, it’s called Fanconi Syndrome / Cystinosis, don’t know more than that but go straight to Sheffield Children’s Hospital. There is a bed waiting for Laura as they should be able to treat her as they know more about the illness.”

Within no time Laura was on a regime of medication and overnight feeds via a Nasal Gastric Tube. She also saw the Opthalmic team to check for Cystine crystals in her eyes.

At the end of March Laura came home to wait to go to Nottingham City Hospital to have a Gastrostromy Tube fitted.

Since then Laura has been closely monitored at both Sheffield and Nottingham Hospitals. She goes back now every few months usually 3 or 4 for blood tests and has a bone age X-ray yearly.

She also has regular eye checks. The Hypoglycemic attacks still occur and we are awaiting more tests for that.

The Brain damage has been very slight; Laura is a little clumsy and slightly un-coordinated at times and struggles to fasten buttons or laces but is fine in herself.

She started to eat independently, even though she still didn’t get hunger pangs. It took her 4 months to go from 800mls to nil but she did it! Laura is very determined!  As Laura was maintaining her weight the button was removed.

Unfortunately the site did not heal on its own (it had been there almost 7 years) so in June 2002 Laura went into hospital to have it sealed.

Her last few sets of results have not been too favorable, but having been told upon diagnosis that a KIDNEY TRANSPLANT would be required around 6-10 years (now 10-13 as medication has improved) we take each day as it comes.

Laura does get tired, she has weak muscle tone, asthma, hyper mobility in her joints (gets lots of aches and pains), is short-sighted, has astigmatism (eyeball misshapen) and is photosensitive (due to the cystinosis).

BUT SHE IS STILL HERE!!!

Story update February 2011

Laura’s Renal status has now been changed from Chronic to Severe as her kidney function is 16%

Update 19th March 2012

Firstly I must apologise for the delay in updating. I pushed myself in hospital to get mobile and get home as I really dislike hospital stays. I was allowed home on the 19^th August but was told I had to return on Monday and Thursday every week for a few weeks for tests to see how the kidney was coping/working. This changed to Thursdays only in October and then fortnightly in November and now I go every month unless I don’t feel well – start shaking more or have ‘flu type symptoms.

With just a few “blips” and adjustments to the anti-rejection medication, I appear to be doing really well. Unfortunately the medication given has caused me to develop hand tremors which aren’t good seeing as I am studying Sciences at College. I managed to get back to College part-time late September and am still only just building up enough energy to cope with full-time. My work has suffered drastically, despite fantastic support from the College but because of the subjects a few absences soon mean that you miss a major part of the topic. I know my results won’t be good enough to get into my first or second choice Universities, so I have decided to re-take this year and so will sit my ‘A’ levels next summer instead of this.

This decision caused a lot of soul searching as I hate to admit defeat and got myself really stressed out and depressed, but hopefully in the long term it will help me to push on.

I would like to thank everyone who has continued to send me cards, gifts and e-mails, your support has really helped to lift my spirits when I have been at my lowest and for that I am extremely grateful. I am still trying to get round to replying to all of you who have supplied contact details.

As I am now 18, I think it is time to move on so that the younger children who are on this wonderful site can get the post they deserve. Don’t worry, I don’t intend to just disappear, I hope to continue raising money for Post Pals and doing whatever I can to help keep the site going and keep putting a smile on an ill child’s face.

Once again THANK YOU TO EVERYONE WHO HAS SUPPORTED ME AND ALL THE PALS AND A SPECIAL THANK YOU TO VIKS, VIX, KATE, KATE AND ALL THE TEAM AT POST PALS FOR MAKING ME FEEL SO WELCOME OVER THE YEARS.

Love from Laura xx

Update 17th August 2011

After the traumatic couple of days when it appeared that the kidney may have been going through acute rejection or just sluggish to work, Laura is now on the mend again. She is up and steadily becoming more mobile. If her blood results continue to improve, to show that the kidney is ok, then she could be allowed home sometime on Friday rather than next week. Once home she has been told that it is usually 2 to 4 weeks away from crowds due to infection as she has limited immunity, so Laura being Laura is determined to be back at College for the start of term. We’ve said we will see.

She also will have to go to QMC at Nottingham twice a week on Monday and Thursday mornings for about 2 – 3 months for blood tests to monitor the function and see if any of the anti-rejection drugs need adjusting. After that it becomes weekly, monthly etc. I know this will cause Laura to stress more due to missing lessons but she will have to cope with it.

Update 13th August 2011

We’ve had a really trying couple of days. Yesterday Laura was in real pain and distress and so scans, x-rays and loads of tests were done, then she was started on anti-rejection drugs.

Today she has had to have a biopsy to rule out rejection. We got the results to say the kidney wasn’t rejecting, it’s just a little sluggish at starting to work independently. She has been given so much fluid to flush the kidney out that she has put on almost 9 kgs, so her heart and lungs had to be checked to see if they were coping.

She seems a lot more comfortable tonight and pain has subsided. In fact she has been up and out of bed and sat up in a chair.

Hopefully we can push on from here – fingers crossed!

Update 10th August 2011

Just to let you know that Laura had her kidney transplant last night/this morning (at 1.30am she went to theatre and at 6.30am she returned to High Dependency Ward). Everything seems to be ok so far. We just need to avoid rejection, so fingers crossed.

Update 18th July 2011

Once again I must start by saying sorry I haven’t updated for a while. I have been busy trying to get everything sorted ready to stop what I’m doing and rush to the hospital once the call comes. I’m trying not to get stressed out and stay positive and focused on things such as trying to look at Universities to go to. I know that my grades won’t be good enough to get to Vet or Medical School, also I have been warned that a transplant may only last up to 5 years so I wouldn’t finish either course, so I have decided to think about something else that is Science related. I now want to study Forensic Science.

My body isn’t producing enough red blood cells, which is causing my anaemia, so two months ago I was put on weekly injections to help as well as continuing with the iron infusions. I go back to the hospital on Thursday so I will find out if they are helping.

Unfortunately my brother, Christopher, can’t be considered as a potential donor now as he was rushed into hospital a couple of months ago with a double pneumothorax (both lungs had collapsed) this time. He is still off work recovering and may have to have an operation to stop it happening again. Bless him; he is so upset as he thinks he has failed me. In fact, he got so upset that he made himself worse worrying about me and in return I was ill trying to get him to stop worrying about me and concentrate on getting himself fit and well. We’ve just been on holiday for a couple of weeks to the East Coast and touch wood both of us seem to have picked up.

College has been difficult as I had to catch up on work missed through illness, which I didn’t fully manage to do but I am hoping that I have done well enough in my exams to continue onto next year – I will find out in August. If not then I will have to retake the year.

I sent off for my driving licence after my birthday but as yet am still waiting for medical clearance.

The fund raising evening went very well and we managed to raise £1010 in total. It was a very good night and everyone seemed to enjoy it – well nearly everyone, dad and his team mates may disagree about that statement!

Once again, thank you to everyone who has sent me mail. Now that College has finished, I am going to try and get round to catching up on replying to it.

Update 23rd February 2011

Laura was put on the transplant list as of 11am this morning.

Update 1st February 2011

Since the previous update in December, I have been back to Nottingham and found that my kidney function has decreased quicker than expected. It is now down to 16% and I have to see the surgeon on the 17th to see if I’m classed as fit enough for surgery and if so I will be put on the transplant list. Hopefully, I will get a transplant within a year of going on the list; however it could take up to 5 years so I would have to go on dialysis in the meantime.

My brother, Christopher, still insists that he would like to be tested to see if he can donate and so the hospital are wanting to check him over to see if he has recovered fully from the spontaneous pneumothorax he had a few years ago. I’m humbled that he wants to do this so I get the chance of a quality and quantity of life but I am also concerned that he is putting his life at risk for mine.

I don’t think I did too well in the exams but have been told not to worry because if I haven’t done well enough I should be able to resit them in June. College are now providing extra help to enable me to keep up with my studies.

Christmas was a quiet affair but an enjoyable one. A big THANK YOU to my Elves. I am in the process of writing to you.

I was rushed into A & E again yesterday as I had chest pains, it hurt to breathe and I had numbness then tingling in my hands and feet. After numerous tests and examinations it appears that I am losing more of my muscle tone as my grip is not as strong as it was (which was poor to start with). I am being put on some more medication to try and help build my muscles back up, or at least stop the break down. I am back home now as all I have been told to do is rest and I said I could do that better at home. Because we only live 10 minutes away from our local hospital they agreed that mum could monitor me at home and if I wasn’t all right she would have to take me back in.

I’m trying to stay as positive as I can and so I am focusing on writing to companies to see if they would be prepared to donate a raffle prize for the Post Pals Fund Raiser that is being put on by friends of ours on the 5th March. It is going to be another Wrestling event, which we are hoping to make an annual one. We have been trying to get companies to donate money so we could buy a wrestling belt to present to the overall winner which he could then take with him to promote the Charity at further wrestling events and then defend the following year. Unfortunately we haven’t had any offers so we are going to settle for a trophy instead.

Thank you to everyone who has and continues to write to me. I am trying to get round to replying but don’t seem to have any free time at present, but I will eventually reply so please be patient.

Update 18th December 2010

Again I would like to start by saying THANK YOU to everyone who has or continues to write/email me. I am behind with my replies due to illness and college work but I am trying to get round to replying to you all, and I really do appreciate your kind words.

Since my last update, I have been back to Nottingham and my thyroid function is apparently ok so the fatigue is still unexplained other than my kidney function is getting worse so that will be making me tired.

I’ve been ill for nearly a month now, spending time ill in bed and also ended up going into hospital. I started with a really bad flu virus which put me in bed for two weeks and then over the weekend started with bad pains in my back across my kidney region. Mum took me into hospital on Monday morning as the pains were so bad. I’m being treated for a severe kidney infection but at first they thought it may have been kidney stones so I had to have a scan done.

I’ve also been back to Nottingham and had more pre-transplant testing done as my function continues to fall and I have been told that I will be going on the transplant list next year but will know more when all the test results come back.

I am seriously stressing about falling behind at college because of being ill and have exams after Christmas when we get back.

I would like to take this opportunity to wish you all the best for the Festive Season.

Update 9th October 2010

I will start by saying Thank You to everyone who continues to send post or has emailed me. I am still working through the replies but my time is taken up by my college studies so please bear with me.

I appear to be a little closer to finding out why I am constantly tired. The new Consultant at Nottingham thinks my thyroid isn’t working correctly so has done some blood tests and I will find out when I go back in November. My kidney function is now down to 20% so I am now on monthly visits to the hospital and will still need iron infusions every other visit. The Consultant is going to see if he can work out a timescale of how long I have before needing a transplant/dialysis. Obviously this will only be a rough estimate but will give us an idea.

I have been in hospital and had laser treatment on erupting ulcers and also treatment on my eyes to flush out and enlarge my tear ducts and also to investigate the cysts. Both my eyes and my stomach are still a little tender but I’m fine. I didn’t think I would manage to get in as I came down with a throat and chest infection the week before the surgery was scheduled, but a course of antibiotics helped so surgery went ahead.

Other than recurrent Labrynthitis, I’m fine at the moment and seem to be coping with college life.

Update 27th August 2010

I would like to start by saying THANK YOU to everyone who has sent post or emailed me. I am now trying very hard to get round to replying to everyone who has included a return address. Unfortunately I have had some lovely letters that didn’t have a return address so I haven’t been able to thank you in person, so I will thank you on here.

I love Russell Howard but he’s caused me a lot of work as I have received at least 200 letters or emails since his programme first aired! JUST JOKING! I think it is amazing how many people are taking the time to contact me and I really appreciate it but do ask that you are patient at getting replies.

I am still waiting to be seen regarding getting diagnosed as to what is causing the fatigue, headaches and dizziness (CFS/ME?). I managed to cope with my exams despite being in pain with my back – I tried to ignore it and coped with strong pain relief and then rest and heat pads when I got home. Having come home crying/worrying after every exam and saying that I had failed I can honestly say that it was a fantastic surprise when I went to get my results on Tuesday and found that I had passed all 12, it still hasn’t sunk in. I have also been to 6th Form College today (27th) and enrolled to take ‘A’ levels starting on the 6th September.

I’ve been back to Nottingham and had another Iron Infusion and have to go back in September. The Consultant I have had all my life has now retired so I have to meet the Doctor taking over from him.

I’ve been back to the Eye Clinic, where they tried to unblock my tear ducts but caught my eyelid as I jumped, and they still want to wait until I go in to get my stomach sorted as they would rather me only have to have one set of anaesthetic rather than two, as each time I go in it carries an increased risk of renal shutdown, which obviously they want to avoid.

I’m still having problems with my stomach and had to ring for advice, the reason I couldn’t get in for further investigation and for them to laser the ulcers was because the Consultant has been away for three weeks with his family and before that we were away on holiday.

I am now under an Open Policy with the Orthopaedic Department as now I have stopped growing they can only keep checking that my bones don’t start to bend again – having said that I am now old enough to be transferred to the Adult Department which is at yet another Hospital.

Thank you to Post Pals for the fantastic pillowcase, Sweet Dreams will really be applicable now! And once again, thank you to everyone who has taken the time to send post, emails and gifts, your kindness is greatly appreciated.

Update 16th May 2010

Sorry for taking so long to update, I’ve been very busy playing catch up with school/course work and now that I’ve done that I am busy revising for and sitting my GCSE exams (2 down, 17 more to do!)

I had a good birthday, thank you to everyone who sent cards and gifts.I’m still struggling with fatigue, headaches and dizziness and have had my annual review with School Health. They are referring me to another specialist to see if we can finally get to the bottom of whether it is CFS/ME – so far everyone has passed comment but done nothing so fingers crossed!

My Kidney function is still stable at 24% and I go back to Nottingham once my exams are over in June to have a further iron infusion.

I had to go to the Emergency Eye Clinic a few weeks ago as both my eyes now have cysts and I couldn’t see properly. They took some photos and swabs, gave me advice (carry on with eye drops) and need me to go in as soon as possible to get treatment (the operation that I’d mentioned previously) – again it will have to wait as exams come first.

I’m still having ongoing problems with my stomach but again that will have to wait – basically I’m going to have a busy summer!

My main problem at present is that I fell awkwardly in a Drama lesson two weeks ago. I’ve bruised the bone around the coccyx area and this has put pressure on my sciatic nerve also causing pain down my leg. Other than taking pain relief (now got to ease off the codeine as it could end up causing me to overdose as my kidneys can’t handle too much) and using heat pads/hot water bottles there isn’t much that can be done other than to try and cope. This isn’t great seeing as I’ve got to sit for a couple of hours at a time for the exams! The Doctor (in A & E) has advised me that it could take weeks/months before the pain subsides and I’m back to being fully mobile.

Many thanks to all who have contacted me by post or e-mail, I am trying to get back to you all but please appreciate that because of the circumstances with my exams it may take a while.

Update 26th February 2010

For the first time in my life I had a Christmas where I was not been ill in bed or hospital. Thank you so much for all the cards and presents I received. Special thanks to my Elves –Kate Dee/Dickinson, Louise and Nicola/ Matt. The gifts were great and I really appreciate the thought gone into choosing them. I will get round to sending you thank you letters – honest.

My health is still up and down but compared to many on this wonderful site I feel I have nothing to complain about. I’m still very tired, dizzy and achy and still can’t get any real diagnosis as to whether this is connected to my underlying condition or whether it is CFS/ME.

I’ve been back to Nottingham and had another iron infusion and been told everything still seems ok – back in March. I’ve seen Eye Specialist again and they still want me in to look at the cyst and now say my tear ducts need to be enlarged as my eyes are watering too much and the water is running down my face instead of draining. I’ve also seen the Consultant Gastroenterologist and he says that he would like me to go in and have further investigations and maybe have any ulcers lasered to stop the pain. I still don’t really want to go into hospital but it looks as if I have to. I have said I will think these two things over as I am very busy at school – I’ve just had my mock GCSE’s and the real ones are in May and I still have work to catch up on, so would need to wait until Summer when normality returns!

The fund raising evening for Post Pals was fantastic, we had a great time (well dad may not agree about that) and raised £513.32. Dad is determined that he has retired now because he has been asked if he wants a rematch so that we can do another fundraiser next year, so it looks like we’ll have to come up with something else.

Many thanks to all who have sent post, I really do appreciate your thoughtfulness and I will try and reply but I am really busy with school work at the moment so getting time to write back is difficult.

Update 26th January 2010

We are holding a Wrestling Event to raise money for Post Pals this Saturday (30^th January) here in Barnsley. For one of the matches, Dad has been challenged to a fight against one of the professional wrestlers and he has accepted as it’s for a good cause, despite the fact he has never done anything like this before and being nearly twice the age of the wrestler. I’ve also managed to get some local companies to donate prizes for a raffle so hopefully we will raise a decent amount of money for Post Pals.

Update 4th November 2009

Since my last update I’ve been to Queen’s Medical Centre twice and had iron infusions both times as my red blood cells aren’t being made as quickly as they should. This is due to my kidneys not producing enough of the hormone which produces them and then causes anaemia.

My kidney function appears to be holding at 24%.

I’ve been kept on medication (changed twice to stronger tablets) for the stomach ulcers as the problem with pain and sickness is not going away, so it is looking likely that I have to go in for further investigation (camera down again).

I’ve been back to the eye clinic to see another Specialist as I have a growth on the corner of my right eye which they say is a cyst. They could do with me going into hospital to have it removed or a needle put into it to drain it – neither option appeals to me. I suppose if I have to go back in for my stomach I could see if they can see to my eye at the same time while I’m asleep!

I’ve also had a water/kidney infection and swine ‘flu, thankfully not at the same time. I didn’t end up in hospital with either of these; I just had strong pain relief and antibiotics and slept most of the time. Mum says I was a little delirious with the ‘flu and rambled a little but I can’t remember.

I’m still having problems with tiredness and lethargy and am waiting for the doctors to officially say I have CFS/ME or not, as one set says its possible then another says it’s not. I’m not sleeping quite as much as I was and am managing to cope with school a little more but still have the back up of a Home Tutor.

I’m just feeling a little low and depressed at the moment as I feel that I’m falling behind and can’t catch up with everything. Also, being a teenager, I feel as if I’m missing out on “life” as many of my friends can do so much more than me. My close ones are very good and they try to include me as much as they can, but I feel at times that I’m stopping them from having a good time, so I often tell them to go off and enjoy themselves then sit around and feel sorry for myself. It’s also a very busy year school wise and I’m just getting stressed and that doesn’t help but I’ll pull myself together. I always do, especially now that Christmas is coming, as shopping for family and friends always make me feel better.

Thank you to all who continue to send post, I am sorry I haven’t had chance to reply but being tired all the time and having so much work to catch up on means I don’t have much spare time.

Update 15th August 2009

Last week Laura had hospital trips to the Eye Clinic, to Orthopaedics, and on Thursday she went as an inpatient for an Endoscopy, biopsies and a 24 hour ph test (as she is constantly being sick). Hopefully she will be home on Friday. Next Thursday (20th) we have an Outpatient visit to Queens Medical Center at Nottingham for a renal check-up.

Laura’s endoscopy showed two duodenal ulcers and quite a bit of irritation – probable cause is the H Pylori (Helicobacter pylori) germ. She has to take 3 new medications for at least two weeks and then see if it has helped – 2 types of antibiotics and one to reduce the acid.

She had to have a nasal gastric tube in for 24 hours which was connected to a probe to check her stomach acid levels and has found it very difficult to eat or drink as it felt as if she was going to be sick every time she tried to swallow.

Following her eye appointment, she has got another set of eye drops to use so now has to have 1 drop in each eye hourly if possible, 1 drop in each eye 4 – 6 times per day, and 1 drop in each eye twice a day.

Update 11th July 2009

Sorry Laura’s page hasn’t been updated for a while. She’s been having problems trying to catch up on things as she’s so tired, achy, in pain, and says she can’t focus to concentrate properly. Since October she’s lost 1 1/2 stone in weight through being sick and not really keeping food down (that’s assuming we can tempt her to eat or drink in the first place). As well as being told it could be Chronic Fatigue Syndrome, Laura has been referred to Paediatrics to check her stomach. She has to have an upper gastrointestinal endoscopy (investigation with the camera), biopsies and a 24 hour ph study (under anaesthetic) done next month. This is to confirm/rule out a stomach ulcer. The doctors have said she has an inflamed/irritated stomach which may be bleeding and causing an ulcer and anaemia as her iron levels keep dropping again.

Kidney function still seems to be stable, but with everything else going on Laura is missing a lot of school. We have a Home Tutor for 5 hours per week to try and stop her from falling too far behind. Unfortunately we are quite a bit behind though, so much of the school holidays will consist of catching up with missed coursework to avoid Laura having to drop some of her GCSE’s that she is taking. On top of that we have several hospital visits planned (as well as the above) so as Laura says “My calendar is booked up for the holidays”.

Thank you so much to all who continue to send cards, letters, gifts and e-mails to Laura. It is greatly appreciated and once she feels a little brighter she will try and reply to you.

Update 10th April 2009

I’m still tired even though I can sleep for hours at a time (anything around 12 – 15 hours per day). Doctors now say they think I could be suffering from Chronic Fatigue Syndrome, following Glandular fever sometime last year, as I have been so low, tired, in pain, sick, dizzy etc., since October and don’t seem to be picking up – at least that’s what the latest tests from my stays in hospital suggest (I seem to be in every month or so having collapsed). I’m missing quite a lot of time from school and seeing as I’m in the first year of doing my GCSE’s I really can’t afford to. Thankfully, school are considerate and are trying to organise some home tuition so I don’t fall too far behind.

I’d like to thank everyone for the letters, cards and gifts that continue to be sent to me, especially for all the cards I received for my birthday. I apologise that I haven’t replied to anyone for ages, I’m just too tired, achy and can’t concentrate properly. Please don’t think I’m ungrateful as I really appreciate the time and trouble you all take to write to me.

Update 1st February 2009

Sorry I haven’t updated for a while. Since my last update things have been a little erratic.

I seem to be catching whatever ‘bug’ is going round. I’ve been hospitalised twice, once before Christmas and the other time last week, with stomach bugs as I couldn’t keep water let alone food or medication down. I ended up on drips to help the dehydration.

I think I’m on the mend, although I had to go back to Nottingham as my blood results are all over the place. My anaemia has kicked in again and is leaving my very tried, achy and irritable, so I need another iron infusion. The irritability is because I’m missing lots of school and have already missed exams which count towards my GCSE’s. Fortunately, my teachers have said they will put me in for re-sits.

Sorry that I seem to be moaning especially as compared to some Pals and their families I’m just having ‘teething troubles’. I think it’s just a case of trying to cope at being a ‘normal’ teenager as well as having problems with my health which restrict me from doing everything my friends can.

THANK YOU to my Elves for the lovely presents – loads of make-up and a fluffy dressing gown and soft pyjamas. Also, thank you to everyone else who sent me gifts and letters. I apologise that I haven’t gotten round to writing thank yous to you all yet. I really do appreciate that you take the time to send me notes just to say “Hi” as they make me feel much brighter, especially when I’ve had a bad day and am feeling low. THANK YOU EVERYONE YOU ARE ALL WONDERFUL!

Update 7th November 2008

Laura’s Renal Function at the moment is 24%.

Prof Watson, Laura’s Consultant, thinks that her loss of function may now slow down a little because it appears that Laura has stopped growing. We were told she’d only be 4′ 6″ to 5’ when fully grown but she’s managed to get to 5′ 3″. Apparently puberty (growth spurts) really takes it’s toll on kidney function – Laura’s has come down from 52% to 24% in just under 2 1/2 years, hence the concern. If the decline slows then we could delay a transplant by a year or two (fingers crossed) but if it doesn’t, or she gets more tired and can’t keep up with her schooling, then he’ll bring transplantation forward.

He was talking to Laura and explained to her that missing 1 day of school per week meant that she was missing out on 20% of her education and that obviously he was concerned that:

Missing school = poor or no qualifications = poor or no job = no money = not being able to reach full potential and leave home/bank of mum and dad.

If we/school/he feels that things are on the slide and Laura isn’t maintaining her grades etc, then we can reassess and hopefully bring transplant forward.

He’s been involved with over 200 transplants so I trust his judgment.

Unless anything shows up regarding the results from the bloods taken on Thursday we’re not due to see him again for 4 months (February/March), so fingers crossed.

Other than that Laura has had another up and down month, coming down with one viral infection after another which ended up putting her in hospital on a couple of occasions, but ‘fingers crossed’ she seems to be ok at the moment.

Again many thanks for the post, it is really appreciated.

Update 18th September 2008

Yet again I apologise for the lack of updates. August was a good month health wise, I had a good holiday in Flamborough with my family and then managed to go on shopping and cinema trips with my friends during the rest of the school holidays.

The day before I was due back at school I went to Pleasure Island with a friend and her Mum and banged my right wrist and had to have it splinted up for a week as I had badly sprained it (not great seeing as I’m right handed!).

I’m now in Year 10 (4th year at Senior School for oldies like my parents!) and have just started working towards GCSE’s.

This week has been a bad one. On Monday I had to be at Queens Medical Centre in Nottingham for a full day of tests, scans and talks preparing me for when I need/have either dialysis or a transplant. These included numerous blood tests so they can get my blood group, tissue type, check for any infection (routine for hepatitis and HIV) as well as checking to see if my immune system is ok – that all my immunisations from birth have created antibodies. If not then they would have to be careful as live vaccines cannot be given 3 months before and up to 12 months after a transplant.

I then had to have a radio isotope injected into my system and have blood taken after 2 hours and then 4 further lots at 30 minute intervals. This will be screened and give a very accurate level of kidney function.

In between the taking of blood I had a heart scan to check that I would be “fit enough” for lengthy surgery and spoke to nurses about dialysis and transplant. I’ve quite a lot of reading material to try and digest.

It is usually a case of talking/planning dialysis when kidney function reaches 25% and talking /planning transplant at 15% but it all depends on the individual. Some patients levels suggest they should be on dialysis/facing transplant but seem to have plenty of energy and don’t feel tired or ill and others who have a function of up to 30% can be rather ill and struggle to do everyday things.

Once all the results are back for when I go to clinic in October I will have more of an idea of where things stand. Realistically, it usually takes around 6 months to plan for a transplant so that’s why they’ve started getting prepared. Apparently kidney function does take a nose dive with the onset of puberty which is why my level has halved in the past couple of years.

My Hb was down to 10 again so I also had to have another iron infusion (third in less than a year).

On Tuesday I just felt tired and achy but yesterday I couldn’t stand up and kept getting really dizzy. I had to go into our local hospital so they could check me over. They think I’m coming down with a viral infection but as my body is low it’s knocked me back. The Doctors did a lot more tests and will let me know if anything shows up and I need any medication. I’m back at home now so hopefully in a couple of days I’ll be ok.

I will try and get round to replying to everyone who has written to me, I have quite a few letters to reply to seeing as I’ve been busy lately. Until then I would like to say THANK YOU for thinking of me, your kindness is really appreciated.

Update 14th July 2008

Sorry I haven’t updated for a while. My health has been up and down, mainly down, and I’ve been feeling a little sorry for myself as I have to keep going to various hospitals for tests etc. but having read the updates from some of the pals and their families, I feel guilty moaning.

I had a busy time in June with hospital appointments supposedly to 4 different hospitals – managed some!

I started with a very bad kidney infection on the Friday before going to the hospitals and nearly ended up as an in-patient then.

Monday – Fracture Clinic (Barnsley) said I needed my shoulder pinning but the Doctor there couldn’t do it as he said that as I already had renal failure an operation could push my kidneys into temporary shut down and I may need immediate treatment so he would refer me to Sheffield – where they treat my kidney failure.

Tuesday – went to eye clinic (Hallamshire in Sheffield) but ended up in so much pain I nearly passed out so was rushed round to A & E at the Children’s hospital where I get seen to. I ended up being kept in for the day having blood tests, scans etc. I was eventually allowed home at 10pm with extra strong pain relief.

Wednesday – (Sheff. Children’s) i managed to get to check up for my knees and everything ok. They said not to worry about my shoulder as it normally takes up to 6 months for the injury to heal and not 3 months.

Thursday – I didn’t get to Nottingham as I got home and started throwing up. I don’t think I should have pushed myself to get to Wednesday’s appointment.

Since then my knee has swollen up again (post viral infection) so I couldn’t walk again for a few days. I have had a bad ear infection and couldn’t hear in my left ear, had plenty of migraines and kept vomiting and broke my big toe.

I’ve also managed to get to Nottingham City Hospital to be checked over by Professor Watson – my Renal Consultant, the Dietician, the Psychologist and the Social Worker as its years since I’ve been down there. The Professor visits Sheffield but I’ve now got to be transferred back down to Nottingham as my renal failure is reaching the level where they need to monitor me more and prepare me/us for dialysis/transplant.

A big THANK YOU once again to everyone who has sent me post, especially Amanda and Grace for the books/letters/cards. I am slowly getting round to replying to you.

Update 2nd May 2008

Laura was going to give an update on the 8th April but refused to do so once she had seen the message on Samantha’s page as she felt that her problems were nothing compared to what Sam and her family must be going through. Laura was very annoyed with herself that she was complaining of being “off colour” when others were fighting for their lives.

Laura has been under the weather recently but most of Sunday 6th April she said she felt “wrong”. She wasn’t sure what was wrong but didn’t feel right, felt tired and head achy. As the day wore on she said she felt a bit breathless so had her inhalers but that didn’t really help. Teatime came and I made sure she had food especially sweet stuff as she said she felt “wobbly” which suggested a sugar episode again. By 8.30pm she was in real pain clutching her chest and was catching her breath so I took her straight to hospital. She said her pain score was 9+ out of 10 and she isn’t one to complain but was in tears.

She had various tests done: Chest x-ray is fine, e.c.g. was a little erratic to start with but fine once we’d calmed her down. Blood results show further kidney deterioration and another dip in iron levels 9.9 should be 13.5 so altogether these created the feeling of near collapse. The doctors were brilliant. We were given the option of overnight stay or coming home and monitoring the situation at home so we decided on home – it was almost 2am.

Laura ended up in bed most of the week as she had no energy to do anything and little things like walking upstairs were too tiring for her. On Thursday she got up to go to school but after half an hour of trying to get ready she admitted defeat as she was in pain and felt sick and dizzy.

She had a very restless night on Thursday and kept saying the pain was kept getting worse. She explained it was like someone was pressing down on her chest but every so often they pressed harder and it was like a stabbing pain across her chest and into her back. She eventually fell asleep and woke up about 11am. The pain was still there then it really kicked in so around 2pm we took her back in.

She had another ECG which looked normal, but kept feeling dizzy and nauseous and couldn’t stand for long before almost passing out in pain. A swelling had developed on her breastbone which was where the pain was localised so the doctors were going to x-ray it but the radiographer wouldn’t saying that she had only been done on Sunday/Monday and the sternum is susceptible to radiation and he didn’t feel it was necessary to do it.

We were then passed on to the paediatrics who thought the pain was: acid reflux due to all the medication she takes, thought it was anaemia problems as all the symptoms matched the ones last year, thought it could be related to the shoulder injury as collarbones shapes didn’t match. So the orthopaedics were called and in the meantime we were admitted to the ward.

The orthopaedics thought it could be a trapped nerve somewhere between her shoulder/ neck, spine or even across the breastbone, and wanted x-rays of her cervical spine, shoulder and collarbone. She was kept in overnight as her pain hadn’t subsided with pain relief, which wasn’t surprising considering that everybody had kept poking and prodding her and making her sit up and “perform”.

Needless to say, as most of the doctors knew nothing about Cystinosis, they were more bothered about the history and symptoms of that rather than treating her for the breathlessness. More doctors followed as she started to retch and then run a temperature but they just said keep an eye on her.

Saturday morning orthopaedics said they were certain it wasn’t anything skeletal so it must be muscular pain. Paediatrics followed saying they were convinced that due to the renal problems, which are causing the anaemia, that it’s joint/muscular related. Also, that people with Cystinosis had a tendency to grow boney deposits and one of the areas is around the breastbone. Basically, the pain is to be controlled using whatever pain relief works and we’ve to go to see the doctors at Sheffield as soon as possible so they can sort Laura out.

On Tuesday 22nd April she had another Iron Infusion to see if this will help boost the red blood cells again. We see the renal consultants on 13th May and hopefully we’ll know whether Laura needs regular injections of erythropoietin to help combat the anaemia and also to see if we need to be transferred to Nottingham City Hospital to start planning for dialysis/transplant.

Basically, Laura has had a rough month and has been admitted to A&E twice and had an overnight stay the second time for chest pains and breathing problems. She’s had various tests – E.C.G’s, X-rays and bloods, been seen by various doctors and told that as her kidney function fails, the normal aches and pains she has will increase as her body has to cope with slowing down.

Thank you this month to all those at the Cardmaking Forum for the lovely cards. Thank you so much to the person who sent the autographed photo of David Tennant too – the envelope was all ripped and it came sealed in a plastic bag from the Post Office saying “Sorry this has been damaged in transit”.

Update 2nd April 2008

I went back to A&E on Easter Sunday as I was in lots of pain. I had my shoulder and collarbone x-rayed this time. I’ve not exactly broken it but there is a separation of the ligament holding the shoulder and collarbone together, so it is out of alignment.

I went to see Orthopaedic consultant at Sheffield to see what they could suggest. Apart from pain relief and resting using the sling with occasional exercises to keep the arm mobile, I can’t really do anything. Hopefully it will heal by itself but if it doesn’t within 6 weeks of the injury (about 3 more weeks) then I may have to have the bones pinned back together. Altogether it could be a few months before I’m free of pain and can move my arm fully again – just what I need seeing as my SAT’s are in a few weeks time!

I’ve been for more blood tests today to check on my kidney function/anaemia etc. By the time I go to see the Consultants in May they should have all the information so I will be able to update then.

Thanks to everyone who has sent cards, letters and gifts for my birthday and for Easter. I really appreciate your time and effort doing so. At present I can’t write but am trying to reply as and when, typing one handed, in between catching up on schoolwork and revision.

Hope you all had a good Easter/month.

Update 18th March 2008

I’ve been struggling with constant migraines lately and they have been the abdominal type which has meant I’ve been vomiting as well as having the bad headaches.

I’ve also been very low and in lots of pain again so have spent lots of time in bed sleeping.

My kidney function has decreased again and I’ve got to have some more tests done during the Easter holidays so that the Doctors have all the results in for when I see them in May.

I fell off a wall at school on Friday and have jarred my shoulder. The pain is so bad and I am struggling to move my arm, so at the moment I have to wear a sling to support it. Typically it’s my right arm/shoulder so I’m struggling to write/carry my school bag etc as I’m right handed. I still intend going to school though as I have too much time off due to illness.

I had a great birthday and would like to thank everyone who sent cards and gifts. I will eventually get round to replying to people but I do have a backlog as I’ve had lots of schoolwork to do.

Update 4th January 2008

Thankfully I’ve had a quiet time since coming out of hospital. I’m now walking around virtually pain free and am looking forward to returning to school next week.

I hope everyone has had an enjoyable Christmas and that the New Year is a good one for you all.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you.

An extra special thank you to all who sent gifts, especially my Elves Kate and Emma.

Update 15th December 2007

I’ve had a bad few weeks. I went back to school on 9^th November as I had a Science test. Still didn’t feel well and had a sore throat, which turned out to be tonsillitis, so I was off school from the 15th. I went back on the 20th although I still wasn’t 100% and came home saying my legs hurt. Mum thought it was due to the walking around and up and down steps at school. On the 21^st I came home limping and in serious pain. My right knee was puffy and very sore. I ended up crying in pain, which isn’t like me. We went to the GP’s the next day and she wanted me to go to A & E at the hospital to see what I’d done. Mum rang the Orthopaedics instead and they said take pain relief and if it got worse to go to Casualty. On Friday I had to go as I couldn’t walk and my knee was twice the size of the other one and the normal painkillers weren’t helping. I had an x-ray and was given codeine to take. I was told to watch for vomiting, rash, headache or unexplained illness, as it could be septicaemia.

They made me an appointment to see the Orthopaedic Doctors at Sheffield Children’s Hospital on Wednesday morning. I didn’t feel very well before we set off, but by the time we got there I was shaking, going hot and cold and being sick, so the Doctor had to admit me. He wasn’t sure if it was an infection in the fluid sack under my kneecap, around the pin site or actually in the bone. I had loads of x-rays, ultrasound, blood, urine and other tests to check for the problem. The Renal team had to be called to check that there was no problem from their side – kidney function has dropped a little with me keeping on being sick. I was kept in for a couple of days then allowed home, but told to rest and take medication to allow the infection to settle and then to go in and have the pins removed.

I’ve just been in and had the pins removed (13^th December) and everything went well. I’m still in pain and am struggling to walk unaided, but hopefully I’ll be fine by Christmas.

Thank you to everyone who has written or contacted me, I wish you all a Merry Christmas and a Happy New Year.

Love Laura x

Update 8th November 2007

I had the Iron infusion done on 26^th October. My blood pressure and heart rate dropped slightly but I didn’t experience any major reaction to the treatment so was allowed home after resting for a couple of hours after the treatment.

I still feel low and run down; in fact I was sent home yesterday as I went really dizzy and nearly fainted. The GP has given me some more tablets to take and wants me to have further blood tests as he thinks it is still to do with me being anaemic and my kidney illness. If the iron doesn’t help my kidneys produce more red blood cells soon I will have to have regular injections.

Thank you once again to everyone who takes the time to send me post. I am trying to get round to replying to all of you. A big thank you to Jazzy for the letter and Halloween gifts. Thank you also to the girls from Mossneuk Primary School for the cards – you didn’t put a return address on so I can’t reply to you personally.

Update 3rd October 2007

I had more tests done early in September and then I saw the Consultants last week on the 25^th. My kidney function is now 30% so I’m classed as now having severe kidney failure.

I have to go into hospital during half-term for an iron infusion (similar to a blood transfusion) to treat the anaemia, as my blood/iron level is still only 9. I still feel tired, achy and generally run down but hopefully this will help.

Thank you to Craig and Daniel for the postcards from Germany (British Forces) and thank you once again to everyone who takes the time to send me post. A big thank you to Kat for the letter and gift despite being ill and struggling to write at the moment.

Update 2nd September 2007

The day after my last update I ended up in A & E for the afternoon as I couldn’t breathe properly, was shaking, my chest hurt, my heart was racing and my arms and legs had gone numb. I had to have oxygen for a couple of hours. At first the Doctors thought I was having an asthma attack combined with a low blood sugar attack. It ended up that I am anaemic, my blood level is 9 and it should be at least 11.5. This caused the trouble as there wasn’t enough oxygen and rich blood getting round my system which caused me to feel so ill. The oxygen really helped and the Doctor said I must eat iron and potassium rich food to help build my blood levels back up or at least until the Renal consultant has checked what medications I can have. I see her at the end of the month but have to go to hospital for some more tests this week.

I’m also looking forward to starting back at school on Tuesday.

Thank you once again to everyone who takes the time to send me post.

Update 14th August 2007

We went away to Flamborough (near Bridlington on the East Coast of Yorkshire) on the 21st July and came back on Saturday.

I have received a quilt from a Mrs L Baldock and am about to send her a thank you letter :o)

Update 2nd July 2007

My health is up and down. Two weeks ago I had tonsillitis and then last week I had awful pains and was diagnosed as having an inflamed gallbladder. The doctor wanted to send me into hospital, but Mum has been ill with Shingles, so he gave me antibiotics and painkillers and said if the pain didn’t ease off over 24 -48 hours then I had to go in. I’m still at home! The pain is still there but no where near as bad. It hurts if I eat or drink certain foods so I’ve got to be careful. If it gets worse again then I will have to go back and go to hospital. Other than that I’m fine.

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address. Thank you to Kat for the lovely book on decoupage and to Elizabeth for the photo – get well soon! I’m still spreading the word about post pals and have even made a poster and put it up at school.

Update 9th June 2007

April came and went without anything major to report. However, May has been slightly different!

I ended up in hospital for a few days with suspected appendicitis which turned out to be kidney stones.

I’ve seen the Rheumatologist who says I haven’t got Arthritis and the joint and muscle pains I have are due to the following things: my renal complaint – I had severe rickets when diagnosed with Cystinosis, my posture – I’m very flat footed and have no arch to my feet (which is why I wear splints) the hypoglycaemia at birth which caused the fitting and brain damage leaving me with delayed co-ordination and motor skills and balance problems, the slight curvature to my spine – again possibly due to rickets/Cystinosis.

I am still having physio treatment every 2 weeks and have just had a check up with the Renal team and my medicines have been adjusted again.

Thank you to all who continue to send me cards, letters, emails and gifts. I am trying to reply to all who supply an address.

Update 2nd April 2007

I’ve had an up and down month, but shouldn’t grumble as there are many children and adults on here and elsewhere that are worse off than me.

The back and leg pain I have been having is getting worse so I’m seeing the Physio  more often and have been referred to see a Rheumatoid Arthritis Specialist to see what he can suggest.

My birthday went well… I was sent home from school as I couldn’t stop vomiting. This turned to a viral infection.

Thank you to everyone who sent cards and gifts for my birthday, especially Julie and Alan Barrett, Kat R, Kate Dee, Hayley Thorn and yourselves at Post Pals. Sorry if I’ve missed anyone.

Update 24th February 2007

I’ve been for my results and routine check up. There is a slight deterioration in kidney function so we’ve had to adjust the medications and I’m now taking the equivalent of 57 tablets per day, not including pain relief tablets or inhalers.

I’ve also been to the Orthopaedic Specialist; the pins in my knees to strengthen and straighten my legs are helping a little but it hasn’t worked as well as he would have hoped. We are going to give it a little longer though. He has done some X-rays on my spine and thinks the problem is more to do with my hips not being level. He is going to monitor me to make sure things don’t get worse.

Update 8th February 2007

Laura broke 2 toes in an accident at school (going from changing room to dance studio and a heavy door swung shut trapping her foot as they do dance barefoot) Hospital can’t do anything really except give pain relief so she ia hobbling around at present.

She has been for repeat bloods and will get results next week (14th). She also has to see Orthopaedic Surgeon on 21st about her legs, to see if operation has worked and also to check on spine curvature.

Update 3rd January 2007

Laura was ill before and during the Christmas period but as she says that’s nothing compared to what other families have had to go through.

She has physio for help with her back pain on 3^rd January and blood and other tests are to be repeated early in the New Year to get to the bottom of this viral infection which is causing problems.

Thank you to Celia my Elf, Kate D for the stocking full of presents, Hayley T, Elizabeth and Jack and everybody else who sent me presents and post. I really appreciate the trouble you have all gone to.

Update 2nd December 2006

Laura has had a good few weeks except for a bad migraine which left her in bed for a few days.

The doctors are pleased with her being able to tolerate her increased medication.

Thank you to Kate (Dee) and Julie and Alan Barrett and Jasmine from Texas who remain in touch.

Update 12th October 2006

Laura has had a nasty viral infection since the middle of September.  It started of as a throat chest infection and has progressed to a kidney infection, having caused an arthritis flare up in between.

Many thanks to Julie Barrett, Kate Dee and Jasmine form Texas, who all regularly keep in touch with Laura.

Update 30th August 2006

Laura’s medication has been increased and she is tolerating it.

Laura has now reached 5ft which she thinks is fantastic as we were warned that she may only reach 4ft 6ins to 5ft fully grown when she was a toddler.

She’s loving watching Dr Who at the moment and reading the books. In fact, she loves anything to do with the programme!

We have mentioned your website on a football forum that we post on and have asked the posters to send a message to any of the pals. Hopefully some of them will.

A big thank you to Julie Barrett for the beautiful needlework horse picture in frame that she sent Laura and thank you to everyone else who have sent things this month.

Update 8th July 2006

Laura has twisted her right knee and has a slight tear in the muscle caused by the pin/screw head cutting into it when she slipped and twisted it on the 28th June. We ended up being in A & E for over 4 hours and had to be seen by the Orthopaedic Surgeons’ Registrar to check the damage. Her knee is heavily bandaged up and she is taking lots of pain relief. She is adamant that she is ok though.

Thank you for your continued support.

Update 31st May 2006

Laura came out of hospital on the 21st April and has slowly been learning to get mobile again.

On 28th April my Mother in Law, Laura’s last surviving Grandparent was rushed into hospital having suffered a heart attack. We were told that there was nothing the Doctors could do as her heart, lungs and kidneys were failing and it was just a matter of time. She managed to hang on until the 19th May when she passed away peacefully in her sleep.

Laura’s body went into shock and she ended up with flu type symptoms of cough, sold, sore throat, dizziness/migraine, sickness and aches and pains. The GP said she must rest to get herself better as she had overdone things trying to get up and about quickly so as not to be a burden on us whilst Gran was so ill.

The funeral took place on Friday and Laura attended – she was determined to go.

Its school holidays now so hopefully she can unwind a little before returning to school.

Update 21st April 2006

Laura has just got in from hospital. The surgeon said the operation was a complete success and doesn’t need to see her for the follow up for another four months. However, she now has to learn to walk again using her crutches. Laura has little upper body strength so is finding this very tiring. Her knees are also still quite painful.

Update 6th April 2006

Laura’s operation has been put back to the 20th April. She went for all her pre-op checks today, it took 3 hours plus and she has to go in on the 19th as she is on the morning list. They have said if all goes well then she will be home on the Saturday.

Update 20th March 2006

Laura is due to go into hospital to have her legs seen to on April 13th.

Laura and family would like to thank everyone who sent birthday cards, gifts and wishes to her.

Update 30th January 2006

Laura was ill all Christmas and new year and then her Gran has been in hospital with heart problems. Both are now ok, although Laura is recovering from flu.

Laura apologises for being late in replying to anyone who has sent letters etc. and an address, but she is slowly getting round to it.

Laura is due at the hospital on Wednesday 1st February, so we will let you know if anything changes.

Update 19th December 2005

On Wednesday Laura saw an Orthopaedic Surgeon about her legs (the bones are turning in at the knees and out at the ankles causing lots of pain; she has had physio etc over the years but has relied on pain relief).

He has said that she has to go into hospital for an operation on both legs to put screws in to realign the bones. Hopefully it will be an overnight stay and then on crutches for a couple of weeks. The screws will be in place for about 9 months. The operation will take place in a few months time – talking about March time.

Obviously she is upset at the news but has said that if it helps to take away some of her pain, then lets get it done.

Thanks for all your support, gifts and letters.