Story written 2008

Dan is 13 years old and his sister Mollie has been featured on Post Pals for some time.

Doctors have found a large mass in Dan’s knee bone and have told us that it is very serious and life threatening as they think its cancer, they just don’t know which type until they have done more tests. They have referred him to Birmingham hospital which he will go to this week. We don’t know for how long for but they told us to prepare for a long stay.

Update 16th March 2011

Now that Daniel is 16 I think it’s time for Daniel to leave Post Pals and make a space for another sick child.

What Post Pals has done for Daniel has been amazing and I would like to say a big THANK YOU to everyone who has taken the time to write to Daniel and send him gifts.

I hope that these generous people can now send the gifts and cards to another deserving child and put a smile on their faces like they have done with Daniel.

Once again, I’d like to say a huge THANK YOU to everyone who has taken the time to send Daniel post for the last couple of years.

Update 10th January 2011

Daniel is doing really well with his physio although they have told us his leg will never be straight and it is as straight as he can get it. He goes to the hospital next week for routine tests so we are hoping everything is going to be ok.

Daniels PSP got stolen so he no longer uses one but he’s still into greyhounds and music.

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

Update 9th December 2010

Daniel saw the consultant from Birmingham the other day and he was really pleased with Dan’s progress, even though he his still unable to bend or straighten his leg fully. They can’t see it getting any better though and think it will be like that permanently.

Many thanks to everyone who continues to send post to Daniel, Post Pals always manages to put a smile on my son’s face, even though he’s 15 and thinks he’s an adult.

Update 17th October 2010

Daniel is due to go to Birmingham next week for a week of intense physio to try and get his leg straight.

I think what Post Pals do is amazing; I know they manage to put a smile on my child’s face so I’m sure they do it to other children as well. To me that it priceless and to all the people who take time out of their lives to write a letter or send a gift – a big THANK YOU to you.

Update 14th August 2010

Daniel is due to have another operation on his leg (2/9/10) at Birmingham Royal Orphopaedic. After this he will hopefully be able to straighten and bend his leg and will be able to walk properly, as since he went on the Ellen McArthur Sailing trip in July his leg has got a lot worse.

Thank you to everyone to has taken the time to send Daniel post as it’s very much appreciated.

Update 5th June 2010

Daniel is still awaiting a date for his operation and is getting very frustrated as he can’t walk properly, but has got a new leg brace for support.

Thank you to everyone who sent post to Daniel last month, it was very much appreciated.

Update 1st May 2010

Daniel has to have another operation on his leg next month to hopefully get it straight enough so he will be able to walk better and unaided. We just have to wait for a graze to heal on his knee from another fall.

Thanks to everybody who has taken the time to send Daniel post this month as he has had lots. Thank you to everyone who has sent Daniel a gift this month, especially the person who sent him a boxful of x-box games but didn’t leave an address, and the person who sent him PSP games and the greyhound rescue in Scotland.

Update 10th April 2010

Daniel is having a lot of trouble with his leg at the minute and is having lots of physio as he is unable to walk properly which is causing him to have problems with his back and spine. We are waiting to see what his consultant says on 12/4/10 as he his getting very tired and feels down a lot.

Thank you for the post that has been sent to Daniel.

Update 6th February 2010

Daniel had a full leg pot/cast put on a few weeks ago and was told on Tuesday that he would have it on for a couple of months. He wasn’t very happy as he thought he would have it off for his birthday, but hopefully it will get his leg straight so he won’t need to go back to Birmingham for another operation.

We would like to thank everyone who has taken the time to go out and buy a card or gift or send a letter to Daniel, it is very much appreciated.

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

Update 2nd December 2009

Daniel had a fall on Friday and cannot straighten his leg. Luckily he hasn’t done any damage to it (as the physio thought he may have) but it has put him back to the beginning as he has been losing weight drastically so has got to have special feeds again.

Thank you for he post Daniel received in November.

Update 2nd November 2009

Daniel has had his Broviac line taken out and they are trying to get his dose sorted with his injections, as it keeps knocking his levels low every time he has it and hasn’t managed to get to the normal dose yet. He is also having a lot of physio on his leg to build his muscles back up but is having problems with his hip as the muscle has gone weak. He is also having problems with the ankle on his good leg, as he is starting to walk on the side of his foot, so we are seeing the orthotics people this week.

Thank you for the mail that Daniel has received this month.

Update 4th September 2009

Daniel has just started his injections.

Thank you for cards, letters and gifts that he received last month.

Update 20th August 2009

Daniel has finally finished his chemo and is now waiting to start his injections.

Thank you for the cards, letters and gifts that have been sent to him this month.

Update 18th July 2009

Daniel has had a bad time in hospital with pneumonia and was really ill for a while. Although he has got over the worst of it, he still has infection on his chest and it has really knocked him for six.

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

Update 16th June 2009

Daniel spent all of last month in hospital with chemo.

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

Update 4th May 2009

Daniel is still undergoing chemo. He was supposed to be in Birmingham for intense physio but has been sent home because his levels were low.

Thank you to everyone who has sent Daniel a card this month.

Update 7th March 2009

Daniel had is operation in Birmingham and it was a success.

Thank you for all the lovely birthday cards Daniel received this month and for the letter and gifts he received.

Update 11th February 2009

Daniel is going to Birmingham tomorrow to have an operation to give him a new knee and bone.

Thank you to everyone that has sent Daniel a card, letter, or gift this month.

Update 28th November 2008

Daniel goes back into hospital on Monday to start his chemo and he will be in for the next 3 weeks.

Thank you to everyone who sent cards and post to Daniel this month as post brightens up his day.

Update 7th November 2008

Daniel has just come back from Sheffield Children’s Hospital today as he had his line put in. He goes back in on Monday to have a kidney scan and to start his chemo. He will hopefully be home Wednesday or Thursday if everything goes ok.

Update 29th October 2008

We had it confirmed today that Daniel has definitely got Osteosarcoma and that it has spread to his soft tissue and we are now waiting to hear from Sheffield as to when he will start his chemo.

Update 24th October 2008

The doctors are 99.9% sure Daniel has Osteosarcoma, it won’t be confirmed until Tuesday or Wednesday of next week though.

Story written 2007

At the age of 18 months (in Jan ’05), Christian was diagnosed with a very rare cancer (approx 15 children a year world wide) called Clear Cell Sarcoma of the Kidney (CCSK). He underwent 5 ½ hours of surgery to remove the tumour and kidney and we were told he had Stage II. He then underwent 8 months of chemotherapy during which time he was often ill and spent a lot of time in our local hospital.

However he finished his chemo on Sept 30th 2005 and spent most of 2006 doing what most normal 2 year olds do – attending nursery, making lots of friends and playing. However, in the summer I noticed that he seemed to tire quite quickly, and he was starting to wake in the night complaining of a sore knee. At his 3 monthly check in August I mentioned this to his consultant who was a bit worried as CCSK tends to spread to the bone. She examined his left leg but couldn’t find any swelling. We decided to wait until his next check in November. In between the two appointments his night waking increased, and I did phone the hospital to let them know, but the messages didn’t get passed on, as I was to find out later. Whilst everyone told me how well Christian was looking, I just knew that he wasn’t right. At our next check up in November it was decided that he should be booked in for an MRI scan. The results showed that there was an increased area of activity on his left femur. Whilst they were 99% sure that it was the same cancer that had come back, they were reluctant to start chemo until this was confirmed with a biopsy. We trekked to the specialist bone hospital in Stanmore for the biopsy, and a week later were told that they didn’t get enough sample and that we would need to go back – this time for an incision biopsy (as opposed to the needle one).This could not be done for another week, and then we had to wait another week for the results – which were what we had known all along; that the CCSK was back.

He has now started an intensive round of chemo (I thought the first time was pretty intensive!) for 15 weeks, followed by a one off really intensive dose whereby he will be so ill he will have to remain in the hospital for anything from 4 weeks upwards. During this time he will receive a stem cell transplant. After this we will have to consider radiotherapy and/or surgery. They have warned us that the odds are stacked against us, but we have absolute faith in the doctors and know that Christian is a true little fighter! At present we are nearly half way through the first lot of chemotherapy.

Update 5th January 2008

Christian has just had a check up at the hospital and apart from some unexplained tiredness that we are keeping our eye on, he is still in remission, so I feel we should now change his status to moved on.

However, I would like to thank each and every person who so kindly sent the boys presents and cards. I will try to send some photos for you. A big thank you to all of Santa’s reindeer – Henry was delighted with their cards! Thanks also to the person who sent Henry some much loved Yu-Gi-Oh cards – I couldn’t read their writing properly for their email address and so have not been able to thank them.

Happy New Year to you all – and thank you for helping to make this past 12 months bearable!

Update 12th December 2007

Christian has been a bit poorly in November, which included a dreaded hospital visit. However, he has since recovered and is thoroughly enjoying school. He has his next big check up in the New Year, and assuming we get the ALL CLEAR I will suggest changing Christian’s status on Post Pals site to Moved On as I feel there are other, more poorly children on the site who deserve the cards, emails and gifts more than us. In the mean time, thank you to everyone who has been sending things our way regularly over the past 11 months. You are all angels.

Update 7th November 2007

Christian continued to do really well during October, but towards the end he was appearing to look exhausted – even after a week for half term of relaxing and not doing much. He is now quite poorly but I am sure it is just a nasty cough or cold bug that he can’t quite fight.

Update 28th September 2007

Last week Christian had a bone scan and a CT scan and the results came back today – he is clear of cancer!

We’ve got a long way to go and he is still in danger from the treatment (his kidney function, for example, is still not what it should be) but we are obviously very relieved.

Update 7th August 2007

All is well with us here. Christian recovering nicely and we had a glorious two weeks in Spain at the beginning of July and are going back for the last week of August. We are still not sure if they have managed to get rid of the cancer and will not know until September when he will have an MRI of his leg and a full body bone scan, so fingers crossed.

As always thanks to everyone at Post Pals and to everyone who has sent the boys cards and birthday presents too! They have been over the moon with everything. Kate Dee, Katie Plant, and of course the wonderful Jamie – a big thank you! However, since Christian is doing so well at the moment we feel slightly fraudulent accepting such generosity!

Update 11th July 2007

Christian completed his radiotherapy on 4^th July and had his Hickman Line removed on 5^th July!! We are all very excited about the summer now and looking forward to going to Spain later this month. Christian can not wait to jump in the swimming pool and run around on the beach. Psychologically he seems to have been quite affected by everything and is having terrible night terrors that can go on for most of the night, or just for 30 minutes. I really hope that when we are in Spain he will start to forget about everything that has happened to him this last year. Physically he seems to be getting stronger every day as his appetite increases. He still wakes up every now and then at night with tummy pain, but that seems to be the end of the mucositis which he got from the High Dose Chemo.

Thank you to everyone at Post Pals and to Jamie Harrington, Bambino Baby, Jack, Harry, Charlee and Chris, Cathe Garnett, Chad Freeman, Craig Packham and WWF – and of course anyone I have forgotten as there are still occasions when the boys get to the post before I do!

Update 11th June 2007

The transplant is over – Hoorah! The month spent in hospital was tough and not without the odd complication but Christian is now at home recovering well. He seems to be doing OK, but is still in pain (especially at night). We have had two weeks at home, off from all chemotherapy and other drugs which has been great. However, we are due back at the hospital to start his daily radiotherapy Thursday 14^th June. Poor thing will have to have it under a General Anesthetic every day.

Thank you as always to all of you at Post Pals – you are great. Thanks also to Julie and Alan Barratt, Katie Plant, Jamie Harrington, Helen Brierley, all the lovely Pal emails that have been forwarded and anyone else I have forgotten (I am not at home at the moment so don’t have access to all the cards and notes that I saved specifically for this message!! Sorry!) The boys really have been spoilt this month by all of you and we are eternally grateful x

Update 3rd May 2007

Christian has now been in the hospital for one week. He was due to have the Stem Cell Transplant today, but they have decided to hold off until tomorrow morning. This has something to do with his chemo finishing late on Monday evening and they need to have 72 hours between the chemo and the transplant. Once he has the transplant we have been told it can take about 3 weeks for his body to start making blood cells again. In this time we expect him to be quite poorly. However, on a happier note, he has been doing remarkably well with everything so far. He was receiving continuous chemo for 5 days prior to the High Dose and apart from nausea (which was controlled with about 4 different anti-nausea drugs) he has been on pretty good form. He seems genuinely quite happy to stay at the hospital, although we are changing rooms today as our pull out bed has bed bugs!! How disgusting is that!! This isn’t necessarily the hospitals fault as once these little critters get in your bed, you are stuck with them. The hospital said they have had them before and threw out the mattress, but the bugs bury themselves into the wood of the bed too! Oh well, hope they aren’t in the new room!

Big thank you’s to the following for their generous gifts and cards etc for both the boys:  Helen Brierley, Kate Dee, Julie Barrett, Katie Plant and of course lovely JAMIE!! Not forgetting all of the most wonderful girls at Post Pals. You are all angels.

Update 1st April 2007

Christian has had a relatively good month with only one local hospital visit for a platelet and HB transfusion. He also managed a morning at nursery before they broke up for the Easter holidays! He was admitted for his last chemo, before the Intensive High Dose and Stem Cell Transplant, on Weds 28/3 and we were due to leave on Friday evening, but he spiked a temperature and came down with a nasty cold. As of today (1/4) he is still there, but is definitely feeling better so we hope to have him home soon. We had some good news this month with the results of his MRI saying that there was no spreading of the cancer, although it is still very obviously in his left femur. He is due to go in for a CT scan of his chest, tummy and pelvis this month and then on approx 26/4 he will be admitted for the Intensive High Dose. They have decided to give him really high doses of two of the chemo’s he has been having over the last 4 months, on a daily basis for one week prior to the Big One. The Stem Cell transplant is due on about May 3^rd. We have been told that we will be in hospital for approx 4 – 6 weeks.

As always I would like to thank everyone at Post Pals for bringing great big smiles to both Henry and Christian. I would also like to say thank you and send a hug to Katie Plant, Kate Dee, Alison Richards, Helen Brierley and a big thank you hug to Jamie H. Christian also received his beautiful quilt and he loves it!

Update 2nd March 2007

Christian is in hospital at the moment. He was admitted on Wednesday as his Hickman Line site (where it enters the skin) was looking very red and sore and a bit infected. Even though he was neutrepenic (no white blood cells) he didn’t have a temperature and was on quite good form so we were hoping to come home yesterday (Thursday) evening. However, towards the end of the day, the biopsy scar on his leg started to get red and swollen and he spiked a temperature so he has stayed in again. My husband and I, and about 100 of our friends, are due to run in a 10k race this weekend in aid of our local hospital. We have so far raised about £65,000! Fingers crossed that we will make it!!

As always, a big thank you to Jamie H (Christian’s new best pal!) Kate Dee, Angie, Leanne & Bailey, Angela and all at Post Pals. I am sorry if I have missed anyone off but yet again I don’t always get to the post before the kids! Please don’t stop sending your cards and gifts – they always brighten our day.

Update 11th February 2007

Christian has been in and out of hospital since he started treatment – mainly due to his blood count being so low he can’t fight infections. He was admitted into our local hospital for 5 days recently and on top of all the various different intravenous antibiotics and other chemicals being pumped into him he received two blood transfusions. We are due back at hospital next week for 3 days of chemo as an in patient. Only two more of this round left – then the Big One.

Thank you from all of us to all the lovely people who have been sending cards, letters, emails and gifts. Christian has received many cards, letters and little packages – the problem is he and his brother are always in such an excited hurry when they see them that they open it all up before I get there and so I unfortunately I don’t always find out who has sent them. The people I do know to thank are, Kate Dee, Helen Brierley, Laura H, Jamie Harrington and the Garnett Family in the States. Please forgive me if I haven’t mentioned your name, I promise to keep a better eye on the post from now on and get to it before anyone else!

Story written 2005

Chloe was born with Complex Congenital Heart Disease, she has 4 large defects in her heart.

She spent her first year of life in hospital with various related illnesses and underwent her first surgery at 6 months old. She was NG tube fed all this time. At 19 months old she had her second lot of surgery followed 3 hours later by her third due to internal bleeding.

Two days before her 2nd birthday, she suffered two big strokes and was paralysed on her left side. She worked hard over the next year to regain mobility, and did really well, although she still suffers with stiffness from time to time.

She finally managed to stop tube feeding at about 4 years old, but finds it very difficult to eat still. At 5 years old she had her fourth major surgery, and suffered many many complications, she had 12 procedures in 10 weeks and missed the entire of summer 2004.

Its taken her another year to recover from her ordeal, and is on a high calorie, high fat diet, which she finds very tough to deal with, as well as being on many restrictive medications requiring blood tests and limiting her daily life to not being allowed to play outside with other children in case she gets hurt or too tired, or being able to take part In school PE classes.

She is now awaiting the day when she will have to be placed on the transplant list for a heart and lung transplant. She can only get about in her wheelchair when we are out anywhere and tires very fast.

Update 12th November 2008

Rehearsals for The Choir are still going strong and Chloe loves it.

Health wise, all is pretty much the same. She has a check up in December, so we will have more to say then.

Update 1st October 2008

Not much to report, Chloe has got a new wheelchair, this time with big wheels that have flowers on them. She can’t push it much herself, but she does try and feels a bit more independent doing so.

An exciting bit of news is that Chloe, along with other members of her school and various other schools in the area, have been chosen to make up a choir for the new series of The Choir going out next year. She is being filmed lots and is so excited; she loves to sing and had to go through an x factor style audition to be selected.

Health wise everything is as it ever was, we just take it day by day. Her flu jab is the end of October and check up is in December.

Update 2nd May 2008

There isn’t much to report on the health front, but thank you so much to everyone who has sent clip on earrings to Chloe – she is so very happy with them!

Update 3rd March 2008

Chloe had her check up and although she is doing ok right now and they are very pleased with how she is coping, the deterioration in her heart has started and now we start the hopefully years long road to her transplant, but sadly it means she is going to slowly get sicker and sicker. We are taking all the precautions to slow down the deterioration – no exercise at all, no more dancing, or anything that will basically tire her out. She is coping ok with the news, just very disappointed, as you can imagine. She also asked her doctor if she could get her ears pierced and they said no, so we have been trying to find pretty, girlie, clip on earrings. We’re not having much luck, so if anyone knows where we can find some, please let us know!

Update 3rd December 2007

Unfortunately we were burgled on November 24^th and Chloe lost most of her dvds, cds, her playstation2 and her nintendo ds and games. So, the excitement of the Christmas build up is tarnished right now.

We are going to the Roald Dahl museum though on December 11th. Then we are going to Butlins in Minehead for Christmas which will be lots of fun.

Chloe has a check up on December 13th; we will let you know how it goes.

Update 30th October 2007

We went to the nickelodeon kid’s choice awards and they put us at the side of the stage where all the acts came off, so we had a great view and lots of waves from people. Chloe and Harry from McFly enjoyed much flirting, waves, blown kisses and held hands as he waited to go on stage. That’s my girl!! The best part for her though was meeting Josh Peck from her favourite tv show Drake and Josh. He came off stage and walked past her, then turned and came back towards her. He knelt down in front of her, held out his arms and she sat there completely shocked for a few seconds, then leaned forward and he picked her up out of her wheelchair and hugged her tight. He then chatted with her for a few seconds, there were more hugs and then he put her back. As he walked off she looked at me and opened her mouth like a goldfish, then started crying! She was just completely overwhelmed by the experience, but i didn’t tell you that part shhhhh! She met the Harry Potter cast, Shayne Ward, McFly, and all the stars from nickelodeon tv. The only sad part is we weren’t allowed cameras and we kept to that rule. It’s a shame the various teenage girls who hounded McFly towards the end didn’t – they fell over Chloe’s chair, stood in front of her and didn’t care one bit when we asked them to move, but that didn’t diminish what was an amazing day out. The children even got goody bags and glow sticks etc!

Update 8th October 2007

Chloe is doing well and enjoying being back at school. She has a check up in December and i will be able to update more then.

We are going to the Nickelodeon Kids Choice Awards on October 20th after Alex won tickets. We are very excited!

Update 22nd April 2007

As some of you may know, Chloe is in hospital at the moment and is really poorly with a viral infection (vomitus maximus) and her heart wasn’t really coping with the strain of it all.

Update 2nd March 2007

Chloe has had to give up both her dancing classes, she tried so hard but in the end it all got too much for her to cope with. She is very, very depressed at the moment. She is starting to realize that she isn’t supergirl, and that her illness seriously does have its limitations. She is starting to question everything now, and is at a low point.

Update 25th February 2007

Chloe was finally well enough to start dance classes for the first time in her life. Thank you for all the nice messages congratulating her; she loved it but has now had to stop as it was too much strain on her body. She is very upset about it and for the first time in a few years feeling very depressed as the reality of her illness hits.

Update 4th December 2006

Chloe finally got her Flu jab after a big argument with our local GPs saying they were not doing them until January. Chloe’s wonderful CLN got on the case and she had it done in November and was very brave.

Update 31st October 2006

Chloe is feeling much better now and is back at school.

Update 14th October 2006

Just to let you know Chloe isn’t doing so well at the moment. She caught a sickness bug about 2 weeks ago and it has really knocked her back. We were in hospital for a few days and she is allowed home on confinement. She isn’t eating at all and drinking only what she needs, in order to stay out of hospital. The hospital thinks that her aspirin is beginning to irritate her stomach and have put her on omeprazole to help it. So she is very poorly at the moment and is confined to her bed and also the sofa for a couple of hours a day where she spends most of her time watching high school musical (her new favourite thing ever) or sleeping.

Update 1st October 2006

A special mention goes to Hayley this month, who even with her studies, writes to Chloe every week without fail and Chloe loves her letters.

Update 29th July 2006

We are going on holiday on August 5th, first holiday in 3 years, Chloe is finally well enough to go and we are so excited!

Update 18th June 2006

Chloe had an excellent birthday! She got a Furby baby, The Bratz Rock Angels Cruiser, more bratz dolls than my fingers could handle opening, lots of glittery stuff and money which she spent in the local toy shop with scary speed on a Furby Mummy, a Tamagotchi, a Bratz bop it game, a golfing set and a skipping rope. Thanks to the post pals people who sent some lovely cards.

The day after that was her cardiac check up and after her scary blue incident a few days before i wasn’t expecting good news, but luckily, all looks good. The flow in the heart is good and there are no blockages in the Pulmonary Arteries, which means the new anticoagulation therapy is proving effective. She has gained 3lbs in 6 months and they put her medication up accordingly, but the best bit of all was that her sats were at 96% (the highest ever without oxygen) Her next appointment is in another 6 months time.

She has just discovered the TV show Drake and Josh and it’s her new favourite show and Jesse McCartney is her new favourite singer.

Update 6th June 2006

Chloe woke up in the night and vomited all over me. She was breathless and hot, so I put her fan on in her room and slept in with her to monitor her breathing. When she woke up this morning she resembled a bottle of blue WKD so i checked her sats and BP. Her sats were a paltry 24% hence why she was so god damn blue and her BP was a little low but that was expected with her sats so low. Not to bother, I’m used to this! So out came her little oxygen tank, i made a call to the Hospital, who told me to give 2 hours on 100% oxygen then the rest of the day at 50% oxygen until her sats were at her normal 80% The people in the oxygen department brought me another 2 little tanks (they are little so Chloe can move about with them) She had her 2 hours on 100% and the blueness subsided enough for her not to look like a smurf!

Its Chloe’s birthday tomorrow, she will be seven. Seven i ask you!!! Who’d have thought it? Two years ago in august her doctors said to me, Carol, its time, she is slipping away, we think we should let her go peacefully, she has suffered so much. I agreed, and we sat and we waited and… she got better! Doctors ate their hats, nurses rejoiced and Chloe wondered what the fuss was about.

I think that’s the first time that’s happened to us, nooooooooooooo actually that’s about the 4th time since she was born! Got to admit though, that time was the hardest. And now 2 years on, she is 7, and doing pretty damn well if i say so myself. We shall have a good day, I’m so so so proud of her!

Update 31st May 2006

Chloe has a cardiac check up next Thursday, and it’s her birthday next Wednesday. I shall update you all to let you know how they went soon.

Update 28th April 2006

Chloe was chosen as her schools May Queen, and was crowned today. The other children did dances and entertained her. They did maypole dancing, which was amazing to watch. It was very sweet to watch the royal procession, with Chloe escorted by Robin Hood, also known as Brendon.

Update 13th March 2006

Chloe is laid up with the Flu, it always knocks her hard, and we usually end up in hospital at some point. She has her flu jab, so the strain is a lot less than it would be, but she doesn’t have the immunity to fight the bug, so she is confined to bed, and probably will be for at least a week. We are trying non hospital admittance this time. I’m being very strict on fluids, not so much food though, who wants to eat when you’re ill?

I had just started decorating her room for her – it’s typical! I’ve moved her into my room for the time being though so I can get it done.

Update 3rd March 2006

She is losing weight, dropped from 21kg to 19kg again in about 3 weeks, so her calories have been upped and she has to start having the powder in her juice again. They are saying if she carry’s on dropping, it’s the tube again.

The school is being great and the kitchen are giving her extra cheese and crackers and doing full fat versions of the food, which is such a load off my mind with all this health kick in schools, which obviously is really good, but there are some exceptions and Chloe is one of them.

Update 11th February 2006

This week Chloe made the front page of the local paper, to promote CHD week and post pals.

Update 27th January 2006

Just wanted to say a  huge thank you to all who sent cards and presents to Chloe in December and over Christmas, i’m trying to get round to emailing everyone a thank you letter from Chloe, but there are so many people! Chloe was over the moon with everything she got, and I have been truly stunned by people’s generosity.

Update 15th December 2005

Chloe had a cardiac check up today, and for the first time ever it was all good.

Her heart functions are stable, there is zero fluid in either chest cavity (yup I said ZERO yaaaay) and her sats were at an all time high of 90% and she has gone from 19 kilos to 21 kilos in a year, not much, but for her it’s up and that’s amazing.

They plan on upping her medications on her next visit, which will be in a record 6 months time!!! Never had an appointment so far away before.

They think she needs to see the respiratory doctor again for her asthma, to discuss the possibility of steroid inhalers now, as the salbutomol and budesonide isn’t enough to stop an attack from starting, if that makes sense. The only drawback with steroids is that it brings a possibility of heart failure in cardiac kids if over used, but we shall cross that when we come to it. For the moment I’m revelling in the happy.

Story written 2006

Chloe was diagnosed with ALL on the 20th of May 2005. Five weeks previous to this she had woken in the middle of the night screaming with pain in her lower back, which was very frightening, and so we took her straight to A&E. They gave her lots of pain relief but were unable to find a reason for it so we were sent home. We made several return trips to A&E over the next few weeks as Chloe was clearly not right. Normally a really happy and bright little girl, she was often in pain, tired and general not herself so eventually she was admitted onto the children’s ward for blood tests. That evening the consultant led us away from Chloe to a private room to tell us that they believed Chloe had leukaemia and would be transferred to London for further tests to confirm this on Monday. It was impossible to describe the devastation that we felt – it simply breaks your heart. We hoped that they could be wrong and it was an agonising wait until the Tuesday for the diagnosis to be confirmed.

Chloe started chemotherapy treatment immediately and the nightmare of what was ahead really hit us. To hold your sobbing child while needles are inserted and general anaesthetics given, to try to force her to take endless tablets and to simply try to explain to your beautiful little girl why all of this is happening to her is horrifying.

But Chloe is truly amazing child and her strength and determination have amazed everyone who knows her. She tries very hard to be brave, even when she is very scared and we are so proud of her. Five weeks after her diagnosis, having had a lumber puncture, bone marrow test, portocath fitted and chemotherapy four days beforehand, she took part in cancer research race for life and managed to walk 1KM before we carried her the other 4KM to the finish. She was adamant she wanted to take part, no matter what we said, and we know that it is this stubborn determination that will get her through this.

She has had a traumatic nine months, including spending Christmas in hospital with pneumonia, and will not finish treatment until September 2007. Despite all this she is still full of smiles and giggles on good days and brings joy into the lives of everyone she knows.

Story update 2007

Chloe joined postpals in Feb 2006 and at this time had been receiving various forms of chemotherapy treatment since May 2005, when she was diagnosed with leukaemia. She has had many ups and downs over 2006 which have included hospital stays and the terrible side effects that come from chemo but she continues to amaze everyone who knows her with her courage and determination to live life. She has faced so much, and continues to do so but never complains. She is a very special little girl who will always bring a smile to your face.

Update 17th February 2008

First of all I have to apologise for the delay in updates. As usual time just runs away!!

Chloe and Charlie had a lovely Christmas and many, many thanks for all the wonderful cards and gifts that they received. A special thanks to Liz Cook, Jane and Kat, Jenny, Julie, Viks and Hayley. The children were thrilled with everything they received and so much thought had obviously been put into what was sent.  

January has been a bit of a low month for Chloe as she has struggled to recover from the bug she picked up just before Christmas but is now bright and well. She is about to begin her childhood reimmunisations (more needles!) but it is essential that these are done.

It seems only right that at this time Chloe should now become “moved on”. She has loved being part of Post Pals and we can never thank people enough for all they have done for her and Charlie. So many people have taken the time to lift her spirits on darker days and I hope they know how much that has meant. Every card, letter and postcard has been kept and she has a very impressive box of them. I hope that we have made some friends for life through Post Pals!

She has now been chemo free for more than six months and, as each day passes, we see a little more of the little girl she was before leukaemia became part of her life. She is changing in appearance quite dramatically – gaining height and losing the steroid weight, but in character she continues to be stubborn and determined, taking on too much to the point of leaving herself exhausted, but we gave up trying to stop her a long time ago!! She is a girl who knows her own mind and who are we to tell her otherwise!

Thank you so much to everyone who has been part of Chloe’s journey.

Update 21st December 2007

We would like to wish all the wonderful Post Pals team, the Pals and families and all the kind people who send smiles to Chloe and Charlie, a really wonderful and peaceful Christmas and a happy and healthy new year.

Chloe has had a nasty bug this week (which we now all have) which was difficult as we were at Euro Disney! However, with the help of paracetomol and Chloe being a trooper, we still had a lovely time and hopefully we will all be fully recovered by Christmas.

The children are getting excited, especially with the arrival of post pals gifts and cards and they are all under the tree ready for the big day.

Christmas Day will mark exactly five months since Chloe’s last chemotherapy and, although we still worry, it is wonderful for her to be able to fight off these bugs on her own with no hospital involved!!

Update 3rd November 2007

This month we have really noticed an improvement in Chloe’s energy level, which has been wonderful to see. We took the children to the Science Museum/ Natural History Museum and then on to Hyde Park and at no point did Chloe show any signs of being tired or complain of pain in her legs. It sounds like a very small thing, but for such a long time any kind of activity like this would have reduced Chloe to a wheelchair or being carried. Darren and I sat in the park at the end of the day watching the children play and it really felt like a turning point and we both felt emotional. We have our Chloe back and we hope so much that her life will now be the same as any other 9 year old, she so deserves it.

The Pride of Britain Awards were simply amazing and Chloe did so well. It was a very daunting experience for her going on stage in front of all those people but, anyone who saw it, will have seen Chloe as she pretty much always is, giggling!! It was three days full of wonderful memories and a truly surreal experience.

Thank you so much to post pals for always being there to support Chloe. Special thanks to Katie for the beautiful fairy book, I can’t imagine how long it took to make! Thanks also to everyone who has sent congratulations cards and messages to Chloe. Thanks you for my parcel too, which was a complete surprise, and very, very thoughtful.

Update 8th October 2007

Chloe has been generally keeping well over the last month apart from the dreaded skin problems. Two weeks ago she had the operation to remove her portacath so she is finally needle free. It is fantastic to see her with energy and enjoying life.

We have had an amazing secret for the last month and are finally able to say that Chloe has won a PRIDE OF BRITAIN AWARD!! We are off to London in a couple of hours for three days and are all very excited (and very nervous!) Chloe was chosen as the Fundraiser of the Year and we are so proud of her. It is not really about the amount of money that she has raised, but how determined she was to take part in Race for Life twice despite how ill she was. The awards will be shown on ITV on Wednesday 10th October at 9pm and I think there will be a write up in the daily mirror in the next couple of days.

A huge, huge thank you to everyone who continues to support Chloe, Charlie and us and we will be thinking of all the children at Post Pals when Chloe receives her award.

Update 24th August 2007

We have had a pretty busy summer since Chloe’s treatment ended, so apologies that Chloe is still sending birthday thank you’s out rather late!

The last day of treatment coincided with the last day of school, which was also Charlie’s last day at primary school. He won the Head Teachers Award, which is the best award the school presents to a year 6 pupil for outstanding effort and achievement and his head teacher said some really lovely things about him. It was a very emotional day, all in all, and we were just full of pride for both of our children and what they have achieved, despite all they have had to cope with over the last two years.

The first week of the summer holiday we spent at Crowhurst Park near Hastings and had a lovely relaxing week. It is a really beautiful place and there are plenty of children there, so Chloe and Charlie had a great week building dens and having mud fights (hence, lots of clothes went in the bin!!) They had so much fun that it was impossible to be cross and it was just lovely to see them having fun together.

The second week Chloe and I went to Butlins with my family, as Charlie was at camp with the scouts for the week and Butlins is Daddy’s worst nightmare! We had a fun time dancing etc, having very late nights and spending Daddy’s money! We were truly shattered by the time we got home!

Chloe was definitely on a high for those first two weeks energy wise, but she is suffering very badly with a “coming off chemo rash” all over her face and upper body. Along with that, she has very bad infected molluscum on her face too. Bless her, it is all very sore and does not look pretty. She has over 80 molluscum on her face alone. We have been at the Marsden this week to see her consultant and a dermatologist and have come away with a very large bag of medications to try and help, but it could be months before all this settles down. She has also had an eye infection which left her with swollen eyes that were completely bloodshot, so we are applying eye drops too. Of course all this is minor compared to chemotherapy, but it is frustrating as it is so visible and means Chloe has to put up with lots of comments from other children. I know she is going to have a tough time when she goes back to school with this.

Life feels very strange at the moment as we are all adjusting to life without the chemo and we are full of mixed emotions, but we are just taking each day as it comes. As always, we are so grateful to everyone who has sent cards and gifts to Chloe and Charlie. The sunflowers from Kat were absolutely beautiful and Chloe wore her “I kicked cancer’s butt” t- shirt with pride and sang the “no mo chemo song” down the phone to her auntie and cousin! Thank you Viks.

Update 21st July 2007

Chloe was discharged from hospital in time for her birthday, which was a lovely day. We went to London to the Amazing Great Children’s Party which is put on by Children with Leukaemia and Chloe and Charlie had lots of fun. The Race for Life was postponed because of the weather (no surprise!) so Chloe had a couple of extra weeks to recover from her hospital stay and her LAST intravenous chemo before she took part, which was better for her.

We did the Race last Sunday and she was fantastic. As she started the Race as Cancer Research’s guest of honour, we were at the very back of 2000 women, but there was no way Chloe was finishing last this time! I think excitement and adrenalin kicked in and she was literally running it, weaving her way through all the people. She was absolutely shattered at the end but very, very pleased with herself, especially as she crossed the line before mummy and her aunties! Three days before this she was at the Marsden having her last bone marrow aspirate and lumbar puncture so it really was a huge effort for her. She has raised lots of money for Cancer Research and we are still collecting it in so a huge thank you to anyone who sponsored her. She really did earn every penny.

This coming Wednesday, the 25th, will see Chloe take her last dose of oral chemotherapy and on Thursday we will be at the local hospital for her last pentamidine, which will end her treatment. It has been a long, long journey but throughout Chloe has been an absolute star. Her consultant has discussed many scenarios of what may happen now with us and I think it will be a long time before we truly relax with Chloe, if ever, but we are excited at the prospect of seeing our beautiful daughter recover from what her body has been subjected to, and to have the luxury of simply being like other children again. For Chloe it will mean no more weekly blood tests (after more than two years she is still terrified of the needle), no more tablets to swallow everyday that stick in her throat, no more intravenous chemo that makes her so ill that she can’t go to school and do the things that she loves, like ballet and no more hospital stays. She will be seen every six weeks for check ups and she is also having an echocardiogram in August to check for any damage to her heart that the chemo may have done. At some point she will also have an operation to remove her portacath but there is a waiting list for this so we do not know when yet!

Thank you to everyone at postpals who have supported Chloe, Charlie and us through all of this. Often, on the days when we have all been struggling, a card from someone we do not know has arrived and it has made such a difference to know that there are so many people out there thinking of Chloe and wishing her well.

Update 30th June 2007

Just a quick update to say that Chloe has been in hospital since Wednesday spiking temperatures of 40.7. They are going to let her go to the Race for Life tomorrow assuming her temperature stays down and we are hoping to be discharged Monday. It’s so annoying to be so near the end of treatment and still Chloe is putting up with so much.

Update 12th June 2007

Chloe is having a rough time since her last iv chemo last Tuesday. By now we would expect to see her picking up but this morning she woke up and was violently sick. She has been clammy with shakes, but her temperature has stayed normal so we are assuming she has picked up something on top of the side effects of the chemo. She had her bloods done today, as she does every Tuesday, so I am hoping she will not be neutropenic. If she were, the hospital would most likely want her in to have a look at her, which tends to turn into “we’ll keep her in to keep an eye on her”.

We are so near the end of treatment now, only six and a half weeks to go, but in truth it is hard to feel any sense of excitement about this at the moment. Chemotherapy is like a monster that you have to inflict on your child in order to fight off the bigger monster that is cancer. It’s a hard place to be, no matter where you are in the journey.

Thank you so much for all that Post Pals does. We have been privileged to make friends with some wonderful people through Post Pals and their support of Chloe, Charlie and ourselves has been amazing. Kat, you truly are a star. Viks, Kate, you work so hard for all the children and to everyone behind the scenes; we are forever indebted to you for bringing those smiles to Chloe, especially on the days when nothing else could.

I’d also like to say thank you to Jenny, Hayley, Katie, Tara, Judith, Leslie and Susanna – thank you all for the sunshine you bring to Chloe’s cloudy days. She and Charlie get so much pleasure from all your kindness.

Update 16th May 2007

Chloe is off school at the moment due to the effects of iv chemo and steroids. She told me she feels so fed up and as steroids cause depression, I suppose this is what she is experiencing, along with the pains and aches of chemo.

She has been asked by Cancer Research UK to be their guest of honour at our local Race for Life in July and start the race, which she is very excited about. She will also be taking part with a little team, although it will definitely be a slow walk rather than a race, as 5km is a long way for Chloe. Last time Chloe took part in Race for Life, it was five weeks after her diagnosis and turned out to be a very traumatic experience – there is a full story on Chloe’s sponsor page if anyone wants to read it. The address is www.raceforlifesponsorme.org/chloesteam. She has been in the local paper this week to get publicity for Cancer Research and hopefully some sponsors. She totally takes it in her stride (unlike mummy, who gets very nervous). Fingers crossed that she will be well on the day.

Thank you so much to Jenny and Kat, you are both so kind. Also to Hayley, who takes so much time to write letters to Chloe. Thanks to Kate for Charlie’s Dr Who card, which he is mad on and thank you to everyone who takes the trouble to send emails and cards – it is always appreciated. Also, thank you to whoever sent me the gifts from John Lewis – there is no name with them, but it was lovely and totally unexpected.

Update 3rd April 2007

Chloe has had a good month managing school every day for the last three weeks. She is still having lower doses of chemo which is probably why she has more energy than normal, but it’s lovely to see her being able to swim and go to ballet, which she absolutely loves. We are now counting down the months to the end of treatment!!

Update 4th March 2007

Chloe spent a week in hospital this month on iv antibiotics. She took oral antibiotics for ten days but the day after they finished she spiked a temperature and was clearly not well so was admitted. She was also in extreme pain this month from the iv chemo and so was given morphine in hospital to cope with it.

She has been back at school this week and is bright despite very low blood counts. Her counts are so affected by the oral chemo that she has had many weeks now where she has been unable to take it, which is a concern, but we are at the Marsden this week and so will be discussing this with her consultant.

Special thanks to Jenny, Kat, Kate, Hayley and Julie – your kindness is always appreciated.

Update 13th February 2007

Chloe got off to a pretty bad start in the New Year by catching chickenpox. So much for having immunity to it! She was in hospital for six days on the iv aciclivor that they give to reduce the effects and then had it orally for five days as well. As her temperature was spiking they also gave her iv antibiotics. To add to the stress, this all happened a couple of days before Charlie took his 11+ so he was a very upset little boy, coping with exams, his mummy at the hospital and a sick sister. Between Darren and I, we juggled hospital overnight stays to try and reassure Charlie and show him he is just as important as Chloe, but it was a very difficult week emotionally to say the least.

Perhaps this is not the place to say it, but I’m sure that any parent who has a child with cancer that also has other children, knows the awfulness of feeling that you are letting your healthy child down by focusing so much on your sick child. It is very hard to not feel that you are failing them, and yet, you have absolutely no control over the situation. I think that week we felt it as a family more than ever.

At the moment Chloe has a chest infection and is on oral antibiotics. Her blood counts were better this week, so despite spiking temps, we are still at home and hoping to stay here!!

Update 31st December 2006

Chloe managed to keep well for Christmas and we had a lovely time. The children were totally spoilt with lovely gifts from post pals and family. We had a slight hiccup when my niece came out in chicken pox three days before Christmas meaning Chloe had to be tested for antibodies, as they had been together all week. Chicken pox is a huge issue for immuno suppressed children, but thankfully Chloe does have antibodies, saving her from an unpleasant injection. It meant not being able to spend Christmas with family, which Chloe was upset about, but at least she was well. Hopefully as she has antibodies she will not come out in chicken pox but I have been told this is not a guarantee, so we will soon know by the end of this week.

Chloe had iv chemo the day after boxing day (postponed from the previous week to try and keep her well for Christmas) and has had a rough week with side effects but it is one more dose to cross off!!

We wish everyone a happy new year and say a MASSIVE thank you for all the lovely things the children received. Many thanks to Judith, Julie, Peter, Jenny, Viks, Hayley, Georgie’s Fund and a very special thank you to Kat, who was the children’s elf. The parcel she sent was amazing and so thoughtful, especially as Kat is not well herself.

Update 3rd December 2006

Chloe came out of hospital after seven days and, touch wood, has got through this week with no cough or temperature for the first time in nearly three months! She had iv chemo on Tuesday, which had been postponed from the previous week because she was too ill, but she has really fought hard to get to school this week to not miss out on any activities. We will be at the Royal Marsden Hospital on Wednesday for Chloe to have a lumber puncture and intrathecal chemo and to see the consultant.

Chloe and Charlie are getting very excited about Christmas and we hope so much that she will stay well this year as last year was so awful, with Chloe in hospital with pneumonia for the whole of Christmas.

Thank you so much for all the lovely post that the children continue to receive. Chloe has had so much support through postpals and, as her parents; it lifts our hearts too to know there are so many kind people wishing her well. Thanks to Amy (Jack M’s mum) Hayley, Jenny, Julie, Alan, Katie, Laura and Chris, Viks, Kate, Kat, Cherie and all those special people who make a difference, and huge thanks to Becky Basanda who sent an amazing parcel from America and Glenda and the lovely children, whose gifts arrived yesterday, causing much excitement.

Update 21st November 2006

Chloe did fantastic in her Gala – 2 silver medals and 1 bronze. She was amazing and really deserved to do well, especially as she is now back in hospital with a u.t.i. and chest infection, spiking very high temperatures.

Update 18th November 2006

Chloe was in hospital last week for a few days with a temperature. As her neutrophil count was very low i.e. she has no immune system, she is given intravenous antibiotics to fight the infection that her body can’t. In herself she has remained quite bright, but still has the dreaded cough which everyone seems to have at the moment, that just will not go. Chloe would like to write something herself so here it is!

Yesterday i went to my cousins birthday party at the captin digby and i dressed as belle. Tonight i am going to swim in my swimming clubs gala and these are the races i am doing: 25m backstroke, 25m freestyle and the 25m family race which i am doing with my brother and my daddy but mummy is going to watch and cheer me on. Thank you to everybody who sends me things and who e-mails me. I am making thank you’s to send.

Chloe is unable to swim very much anymore due to her low blood counts and often being unwell but despite this she wants to swim in the gala. She knows she is likely to come last but is determined to have a go and this says so much about Chloe. She is such a fighter and we are so proud and inspired by her determination.

Update 7th October 2006

Chloe has had a very mixed month health wise. She has had some kind of bug which made her very sick and then in the last week was not great with her iv chemo and had bad side effects from coming off her steroids. I know when she is feeling really bad as she generally never complains, but last week when she was in a lot of pain she said “its not fair mummy”. This is about the most you will ever hear her say when she is really fed up with it all. Thankfully she seems to have improved in the last few days and the smiles are back.

Her brother has been unwell over the last couple of days with a high temperature, so we are crossing everything that she doesn’t catch it, as it would mean hospital for her. She already has a very nasty chesty cough. They have only been back at school 3 weeks and already the bugs are about!!

On a much brighter note Chloe did have a pretty amazing experience last weekend as she got to meet Kylie Minogue!! She entered a competition on Newsround to go to Kylie’s book signing in Oxford Street and she won!!!! They had 100 places so she was very lucky and it had nothing to do with her illness. She was not feeling too well but there was no way she was not going! She had her copy of The Showgirl Princess signed and a photo with Kylie. Kylie told her she looked very pretty, which was nice. As Kylie was diagnosed a couple of weeks before Chloe it all felt a bit ironic them meeting. The first time Chloe had to have a blood transfusion, a couple of days after finding out about the leukemia, she was absolutely distraught and terrified. To try and make it better I said “you never know, it might be someone famous blood” and she said “as long as it’s not Kylie’s as she’s got cancer”. At that time she knew that she had leukemia but not that it was a form of cancer. It was a heartbreaking moment for me, said in such innocence, so it was lovely to see them together 17 months later. It’s funny how life works sometimes.

Thank you to all those special people who have sent cards, letters, postcards, emails and gifts to Chloe this month. I apologize if she has not gotten back to you yet, especially to Hayley, who takes so much time and effort with her letters, it has been one of those months!

Update 12th September 2006

Chloe has had more energy over the summer holidays than we have seen her have since before she was diagnosed. It has been so lovely to see her able to ride her bike and really have fun with friends. We do not know if this is because she has not been at school or whether her body is maybe coping with the chemo better, but whichever, it has felt like we have had the “old” Chloe back.

The intravenous chemo and steroids are still making her feel bad but this month the effects only lasted about eight days, which is a big improvement. We went to Wales at the end of August and had a really great holiday. This week she is due in London for her chemo via lumbar puncture and then her next IV chemo is on 26th September, so fingers crossed she will cope well again. She is such a star; we are incredibly proud of her.

Thank you so much to everyone who has sent a card, letter or gift to Chloe this month. Thanks to Hayley for her lovely letters, Julie and Alan, Viks, Kat, Katie, Nicky, Kate, Judith, Becky, Charlotte and Maddy, Cherie and all the people from the Cardmaking Forum Raker who have sent such beautiful cards. They must have taken ages to make. Many thanks also for the post that is sent to Charlie.

Update 4th August 2006

Chloe received so many lovely birthday cards and gifts. Special thanks to Julie, Nicky, Viks, Kate, Cherie, Laura and everyone who takes time to write to her and Charlie. She is still sending her own thank you’s but likes to make them so I’m afraid it is a slow process!

We had a really lovely time at EuroDisney and Chloe was treated like a princess, thanks to the Christian Lewis Trust, who made the arrangements for us. They make the hotel booking and arrange a special blue badge for Chloe that means we did not have to queue for any rides and all the staff go out of their way to give her (and us) a truly special holiday. It was very emotional at times, and difficult not to worry, especially when Chloe was very sick on our second day, but we are so glad that we decided to go. It was wonderful to see her so happy and all the characters made a bee line for her, cuddling and blowing her kisses. Mary Poppins, who Chloe loves, gave her a ‘special’ nod and Minnie Mouse twirled with her and made her feel so important in front of all the other children. It truly is a magical place.

Unfortunately reality is never far away and the iv chemo was given the day after we got back but we had an extra, extra special treat that night as we took her to see Westlife, and thanks to her Uncle Paul, Chloe was invited backstage to meet them!! All in all it was quite a week.

The chemo did it’s usual, making her feel so bad after, but for Chloe now it is just her ‘normal’ to feel so ill. That, in itself, makes me want to cry but it certainly doesn’t beat Chloe. She shows us month on month how strong willed she is and she always amazes us. This month she was awarded the endeavor award at her ballet awards night and it was lovely to see her collect it on the stage. I don’t think she realises how much people admire her, to her she just gets on with life, no matter what that brings.

Update 2nd July 2006

Chloe has been much the same this month. She is unwell and off school when she has the intravenous chemo, and then after about seven days she starts to feel better. She suffers a lot with headaches and nausea throughout the rest of the month, but the anti sickness medication helps a lot. Unfortunately, the doctors have said that all children react differently with the side effects of treatment and Chloe’s headaches and nausea are her body’s reaction.

It’s very hard seeing her not herself on so many days, but she tries really hard to be a normal seven year old in public and put on a brave face. She is very conscious of being different to her friends in what she can do physically. It is at home that we see how hard a toll the treatment takes on her, but she is learning to try and save her energy for the things she really wants to do.

We are going to Euro Disney tomorrow for four days and are crossing everything that she will stay well. She and her brother are excited and she will be celebrating her 8th birthday while we are there. It will be a very emotional holiday I expect!

Many, many thanks to everyone who continues to send Chloe such lovely cards and gifts. It is obvious that people make such an effort and your kindness is so appreciated by us all.

Update 6th June 2006

Chloe has been unwell with the IV chemo this month and this does seem to be forming a pattern now. It is given every 4 weeks and she has to take steroids for a few days after. The combination of the two is taking it out of her for about 7-10 days. Her vision is being affected, which we will query at the end of the month when she is due at the Royal Marsden and she is very tired with bad nausea and headaches. For the other two weeks she is relatively ok and able to go to school. Thank you to everyone who has sent Chloe post, it always brings excitement and a smile!

Update 1st May 2006

A huge thank you to everybody who has taken the time to write to Chloe. It’s been very exciting for her and has given her lots of smiles. We have been truly amazed at how kind so many people have been and special thanks to Julie, Post Pals, Kate, Cherie, Nicky – you are all wonderful!

Chloe has now gone into the maintenance part of her treatment which will last for the next 16 months. This consists of:

• Daily chemotherapy tablets
• Weekly another type of chemotherapy tablet to protect her brain
• Weekly antibiotics
• Weekly blood tests
• 4 Weekly intravenous chemotherapy
• 4 Weekly 5 days of steroids
• 12 Weekly bone marrow aspirate to check levels of disease
• 12 Weekly lumbar puncture to administer chemotherapy

Unfortunately all of these bring lots of unpleasant side effects but Chloe is very determined to do as much as she possibly can. She has been able to go to school in the last couple of weeks which really cheered her up and despite getting physically tired very quickly, has even managed to go swimming and to ballet. She has an amazing spirit and we are so proud of her. She has loved all her post and emails and is very excited when she receives something so thank you so much to everyone who has taken the time to contact her!

Update 2nd March 2006

Thank you so much for the post that has been sent to Chloe. She has been in hospital for a few days and it was lovely for her to receive the cards. It has caused quite a bit of excitement and I just wanted to thank you for bringing smiles to her days.

NB: Please do not send sweets

Callum and his family are Christians.

Story written 2005

Callum was born at 35 weeks by emergency Cesarean and it was instantly apparent that Callum had problems. He was immediately transferred to the special care unit where he was put in an incubator and ventilated. Callum was critically ill and not expected to survive. But Callum was a fighter and after 48 hours started to turn the corner. Callum spent eight weeks in special care, where at six weeks after lots of tests, Callum was diagnosed with a genetic syndrome called Prader William syndrome. I had great difficulty accepting this at that time and even now I sometimes struggle with the diagnosis. But on the whole we take one day at a time.

Callum as a baby was very floppy just like a rag doll and he did not support his head until he was one. He didn’t cry and barely woke up, he had to be woken for feeds. But as the months went on Callum became more alert and responsive. Callum started to support his head at one year, was sitting by 20 months and could walk at 2 years 10 months. From the age of two onwards an insatiable appetite kicks in and people with P.W.S feel constantly hungry. They cannot satisfy their appetite and if allowed, a person with P.W.S can eat themselves to death. Over the last six months or so Callum has shown a increased interest in food and has asked for snacks. But to date Callum has had a very healthy diet with only three meals per a day and no extras. I just hope I can keep things this way so Callum stays slim and healthy.

Callum for the past year has been having a nightly growth hormone injection, as adults with PWS tend to be on the short side with small hands and feet. The growth hormone should allow Callum to be of average height with normal sized hands and feet though. It also has other benefits including increased energy and can help with muscle tone. Callum has grown 9cms the past year and is catching up with his peers and his feet have grown 3 sizes. Callum has learning difficulties and delayed speech and he attends a special school three days a week. He is due to start mainstream two days a week in September and we will see if a dual placement works for him.

Callum is a very happy sociable little boy and has given our family so much. We are very proud of him and all he has achieved to date. Callum has worked very hard over the past four years.

Update 6th May 2008

Callum has been really well lately, but has put on a bit of weight. His interest in food is a lot stronger now, although it is still manageable.

We have just been to Wales for a week which was really lovely. We stayed in Cerbra’s holiday home.

Update 31st January 2008

It has been a while since i wrote but have been really busy with Callum as he has had a small accident. On the 9th December on the way to a Christmas party Callum caught his little finger in a fire door. He broke his finger and the nail came out of the nail bed. I took him straight to the hospital where he had to have a small operation to put the nail back in the nail bed. He was put straight on antibiotics but the finger became very infected and all through December except for Christmas day we had to go to the hospital to have finger checked. Towards the end of December, Callum was given a third course of antibiotics from the hospital and then finally was discharged from hospital on the 8th December. After a couple of days though the finger started swelling again and was extremely red so we went to his doctors and he was put on a 4th different antibiotic, but towards the end of the week course the finger started looking worse. Well, he is now on a 6th course of antibiotics and the finger is looking a bit better. We are due to go to Wales on Saturday so we saw the doctor on Monday and he has given me some antibiotics for Callum to take while we are in Wales. I’m going to see the nurse Friday evening just for her to check his finger before we go.

Other than that Callum has been really well (it must be all those antibiotics). Callum is having a sleep study on 14th February and at long last we have got an appointment to see an ear nose and throat doctor on the 26th February to see why his speech is very nasal.

I know this is late, but i would really like to thank everyone for the Christmas gifts and cards.

Update 2nd December 2007

Callum has been very well and happy over the last few months. Callum saw his consultant last week and he is very pleased with his progress overall. His mainstream school have managed to get funding for a laptop for Callum to use in class. Due to his low tone he is still finding it impossible to hold a pencil and to put pressure on paper to write or form letters. He is enjoying his wheelchair and i am developing muscles in my arms. I have just bought Callum a puppy (a llaso Apso) and the puppy will be able to go out for short walks in a fortnight, so hopefully this will encourage Callum to walk more.

We wish everyone a very happy Christmas and new year.

Update 1st October 2007

Callum has been very well over the last few months, although he is still having lots of problems with his speech and low muscle tone. Callum is waiting to see an ear throat and nose consultant to see if his tonsils and adenoids are affecting his speech as his speech is very unclear. Callum was issued a wheelchair last month so this is making trips a lot easier, as more often than not i would end up carrying him, as he got so tired walking.

Update 15th August 2007

Callum has generally been very well over the last few months. His muscle tone has not improved and generally finds walking very tiring, so has just been measured up for a wheelchair. His food interest is more apparent now than what it was, but is still generally manageable. He can get quite cross when i say no but i am firm and do not give in. Thankfully we do not have this situation often at present.

Update 3rd June 2007

Callum has been really well throughout the winter months. He had just a couple of chest infections which he got over quicker than past ones. Since i last wrote his interest in food has stepped up a notch but i am still finding it manageable. His latest trick after eating something and finishing it is to say ‘i did not like that mum i better have something else’ to which i say no! Sometimes he accepts this, but other times he gets a bit cross. His latest sleep study and thyroid check where both fine which we are thankful for as it is very common for children with P.W.S. to suffer with sleep apnea.

Update 1st December 2006

Callum is very well at present after his spell in hospital. Growth hormone is going very well, Callum saw his Endocrinologist last week and he is very pleased with his progress height wise as he is now average height for a five year old. There is still not much improvement in his muscle tone though. Callum and I would like to wish everybody a very happy christmas and a massive big thanks to everyone who has written and sent cards to Callum.

Update 24th November 2006

Up until last week Callum had been really well but last Tuesday, at school, Callum started vomiting. It is very rare for somebody with P.W.s to vomit and can be very serious. Callum’s school phoned an ambulance and he was admitted to hospital where he spent 48 hours being monitored and trying to find the cause of him being sick. He had scans and x-rays and was seen by doctor after doctor and surgeons but nobody could find the cause. Children with P.W.s have a high pain threshold and this can mask the symptoms of a serious illness and it might not be until they vomit that anyone is aware of a serious illness which can be life threatening. On discharge from hospital all the doctors agreed on one thing – they had no idea why Callum was sick. Callum is fine now and all he talks about is having another ride in an ambulance.

Update 20th October 2006

Callum has been very well over the last month, he has just had a small cold which didn’t last too long. Callum is waiting to have a bone scan as the growth hormone he is on can age his bones, so hopefully this will be done next month. Callum’s interest in food has stepped up a notch – he keeps saying he is not full after his meals and will often say ‘i havent had my tea yet mum’ more or less straight after lunch. I expect this is the start of how things will be. Callum talks about food quite a lot but hopefully i will be able to manage it and it will not affect his health too much.

Callum has a new Computer which Cerebra (a charity for children with brain injured or brain related illnesses) bought for him. He loves it and has a special mouse so he can play lots of games and do school work.

A big thank you to Julie and Alan this month.

Update 3rd August 2006

Callum has been really well and happy over the last couple of months. He has just started swimming lessons to hopefully improve his muscle tone which is still very poor. He is now showing a great interest in food and will say after a meal ‘i am not full yet mum’ so it seems his food awareness is now becoming an issue. We would like to say a big thank you to Julie and Alan Barret for all the cards and gifts they have sent.

Update 6th June 2006

Callum has been quite poorly over the last two months; he has had one chest infection after another but seems to be on the mend now. He spent his birthday in bed though.

I would just like to say thank you for Callum’s cards and gifts that have been sent to him. Callum loves all the cards he gets; he keeps them in a pile and often takes them out in his backpack.

Update 30th March 2006

Callum has been really well this past month. He has been working very hard with his speech therapist and his speech is really starting to develop. Callum saw a dietician at school last week and she is very pleased with his weight – it is spot on for his height which is really good for someone with P.W.S.

Callum has had lots of post this past month. So lots of thank you’s to all who have sent post and gifts to him. A very special thank you to Stephen who sent Callum a wonderful Corgi Old Fashioned red bus. Sue, we do enjoy your little notes you send Callum. Kate Dee, thank you once again. Emma and David – Callum has had great fun with the medal you sent him. Nicky, we tried so hard to do the Maze game and thank you once again to everyone else.

Update 3rd March 2006

Callum has been very well over the last month. Callum saw his consultant on the 28th Feb and he was very pleased with Callum’s progress over the last six months. His speech is improving slowly but surely. His daily injection of growth hormone is still working well as he has grown quite a bit and is now average height for his age, which is fantastic as a year ago before starting G.H. Callum was well below average for his height.

Thank you for my cards over the last month. A big hug and a sloppy kiss for Kate Dee for the great bus and the fantastic London bus snow globe, which will be taking pride of place in my bedroom (Callum has not stopped shaking the snow globe he really loves it, thank you so much Kate). Also thank you to Tez for the letter and for Splash the Orca.

Update 27th January 2006

Callum was so glad to go back to school after the Christmas holidays. After being back a few days Callum became unwell with a temperature and now has a chest infection. He’s now on his second course of antibiotics; because his very poor muscle tone means he cannot cough to clear his lungs. He also has an upset tummy which i think is from the antibiotics. Callum is a real drama queen when he is ill and keeps saying I am ill mum.

On a different note, Callum saw his Endocrinologist last month and he was very pleased with Callum’s progress since being on Growth hormone. His results from sleep study where fine and his thyroid levels where fine as well.

A big thank you to everyone who has sent cards to Callum.

Update 4th January 2006

We hope you all had a lovely Christmas. Callum sent his elf a Christmas card thanking her for her wonderful kindness. I would like to say i was completely overwhelmed by all the parcels and cards he received. Thank you once again everybody.

Update 8th December 2005

Callum has been very well and we have had no problems at all. Callum is due to see his Endocrinogilist 19th December to check all is well with the growth hormone which Callum has daily by injection form. Callum had lots of cards and postcards and gifts last month which we would like to thank everyone for. He loves his Post. Callum is excited about christmas.

Update 9th November 2005

The colder weather is here and unfortunately Callum seems to get lots of coughs and colds in the winter. He currently has a chest infection and due to his poor muscle tone he cannot fight these coughs and colds. He is now on his second course of Antibiotics, but this does not stop Callum smiling and laughing.

Thank you very much for all the cards, letters and gifts Callum has received.

Update 26th September 2005

Today Callum received his lovely posty project and would like to thank the lady who made it. Callum will have great fun writing in it. He would also like to say thank you for all the gifts and stickers he has received.

Update 7th September 2005

We have just been in hospital for a sleep study and to have Callum’s thyroid checked so waiting for results of them at the minute. Callum is due to start his new nursery at local mainstream infants tomorrow; he will be doing a dual placement with the special school he currently attends.

Story written 2004

Bethany was diagnosed with cerebral palsy when she was nine months old. She was a premie baby born 8 weeks early. She was then diagnosed with epilepsy and registered blind before her first birthday.

In 1998 she had a peg fitted to feed her through and then in 2000 she had surgery on her left hip. After surgery she suffered 3 fractures to the left leg. She was diagnosed with Osteoprosis.

In 2001 she had surgery on her stomach to stop her vomiting, in Great Ormand Street. Then in 2003 she had surgery on her right hip which sadly did not work and left her in a lot of pain. She had surgery on the hip again at Bristol Childrens Hospital in November 2004. She will be back in in December to have her cast removed and hopefully find out that the surgery has worked, although she will be prone to fractures for twelve months.

Bethany is a happy go lucky girl. She never complains about any of the pain she is in.

Bethany doesn’t have use of her hands, but can pass small objects. She has visual optic nerve damage and is totally dependant on carers.

Story update 2007

Bethany has had six years of surgery and we are hoping she does not have to undergo any more. Her epilepsy is starting to cause a real problem at the moment. They are bigger and last a lot longer than before. She is still a great Westlife fan and just the mention of Mark’s name makes her go all giggly. Life is getting harder in the fact that she is much bigger and not having every thing to hand when we go out or away makes life difficult. She still needs to attend Bristol Children’s Hospital and Frenchay for regular check ups. Her right hip seems to be popping in and out of its socket which is a real pain as she had a operation in 2000 to put it back in. We will leave well alone as it does not seem to be causing her much pain. She has an eye for the boys at the moment and is very cheeky.

Update 14th March 2010

I think it is time for Beth to move on from Post Pals now. She is 18 and although she is still having health issues, I just think she is growing into a young lady who is more into her TV, music and boys.

We can never thank you all enough for the wonderful cards and gifts she has received over the years. We have made great friends with a lovely American lady who we will always have contact with.

I would like to thank everyone that sent post for her birthday, Christmas and world book days.

You are all great and I wish you every luck in the future.

Update 2nd November 2009

We have had quite a few issues with Beth over the last few months. For some reason Beth has stopped eating enough for her to get all the nutrition she needs. She is now being pump fed. Her VNS was turned back on as we had no choice due to no medication working for her seizures. Sadly the last ramp has made her voice slightly croaky again and liquids are a slight issue as she is coughing yet again. It sounds like the VNS is causing these issues as I had thought in the past. Where we go now I am unsure.

On a happy note, Beth is going to Orlando to celebrate her 18th, where have those years gone to. She will be flying upper class as she does not sit well enough for economy. We decided it was her 18th and she is hard to buy for so why not. We will be out there for 3 weeks.

Update 9th August 2009

Beth is having a few problems with seizures at the moment. She seems to have stopped eating as much so is being topped up with peadisure as weight is falling off her. We are all struggling with the school holidays and the process of her going from children to adult services.

Update 2nd July 2009

Sorry for late updates but it is manic here with Beth transferring to adult services this year. There is so much work to be done. It worries us that we will miss something.

Beth is fine. She is still having the odd seizure, but has had a good couple of months. We are all looking forward to school holidays so we can chill.

We are planning for her 18th birthday at Walt Disney World. Beth has a real treat with flying upper class. This is because she can not fly economy any more due to poor balance and so we need her to lay flat. That’s not until November, but she has lots of theatre shows to see that will keep her going.

Update 1st April 2009

Beth has had an ok month. We’re still waiting for tests to be done for her problem with swallowing liquids. We are run off our feet with appointments for her transition to adult services. It’s hard going.

Update 4th March 2009

Beth has had quite a few seizures this month. She needs to under go some tests due to her being unable to swallow liquids. Her vns has now been turned off and she will start a new medication soon.

Update 1st February 2009

Beth has been having some side affects with her VNS and we really need to chat to the doctors about it. We’re not sure yet what they will do, but we have basically had enough of them as they are not fair on her, so we may request they turn it off. This will be a real disappointment. She has had some seizure activity too this month.

Update 2nd January 2009

Bethany has had her surgery to re-site the VNS. Sadly and as usual, all did not go to plan. Firstly, they could not find a bed for her even though we were half way there (phoning after 11.30am and being there by 2pm is not possible from Cornwall). We decided to carry on and would go shopping so not to waste a journey.

Before we left, her respite home had said she was not too happy about being moved, which was suspicious. When we got to the new shopping centre we went to change Beth and when we moved her she screamed very loudly. We made a visit to the children’s hospital to be told she was too old by a week. We went straight to BRI and i must say they were fantastic. They did lots of tests and said they thought the femur was catching against the pelvic socket again.

We then had a call saying they had a bed at Frenchay for her. BRI contacted Frenchay about giving Beth a nerve block whilst she was under and they agreed, but when we got there they said she was too complex. Thankfully we have not seen a problem since. It’s a bit strange, but we are counting our blessings. She had surgery the following morning which should have taken 1 1/2 hours but it took 4 hours. We were all concerned; apparently the wire had broken so they had to redo the whole procedure from scratch. They then had her in recovery for 3 hours as there was no bed for her. We were finally allowed home the same evening, although it was rather late when we did get home. Anyone that spends time in hospital will understand the urge to leave no matter how far you have to travel.

Bethany then developed an infection in two of the three scars which cleared up with antibiotics. Sadly the scars look like train lines and we are not happy. The VNS is still switched off and we are waiting for them to turn it back on. We have to start from the beginning again which is a pain. She has also had some bad seizures over the last three days. We are going to Bristol again on Wednesday for an outpatient appointment to check her spine.

We would like to thank Post Pals, Marcene, Julie, Judith and Clare for all the lovely gifts Bethany has received for her birthday and Christmas. If there is anyone i have forgotten i am very sorry, but a big thank you to you all.

Update 28th November 2008

Bethany went to spend sometime at the local college today. She was a little quiet but said she liked it.

She is going into hospital in a week to have the VNS replaced to where it should have been put in the first place.

She is also looking forward to her birthday on Monday; i can not believe she will be 17.

Update 2nd November 2008

Bethany has had an ok month and her seizures are much the same.

Update 28th September 2008

Bethany is having a problem with her seizures. We are going to Bristol in a couple of weeks to look at having the VNS put were it should have been to begin with.

We have just had our first visit to Little Bridge House which is a children’s hospice. We had a lovely weekend and all feel a few pounds heavier.

Sadly, two of Bethany’s cats passed away in September. They were both very sudden and unexpected. This upset Bethany a lot.

Update 30th August 2008

Beth’s seizures have not been good at all. We also learnt that the surgeons put Beth’s VNS in the wrong place that is causing no end of problems. It looks like they will have to redo the surgery.

Update 31st July 2008

Bethany has not had a good month due to really bad seizures. They are becoming quite worrying.

She has just been offered a place at Little Bridge House. We are all looking forward to our stays there.

Thanks for all cards and letters.

Update 1st July 2008

Bethany has had a good month, although she has had quite a few seizures. Her vns has now been switched on although we are not allowed to use it until the middle of July.

We have been to see Westlife in Cardiff and she had lots of fun at the concert.

Update 9th June 2008

Bethany has now had her surgery. The VNS has been fitted and on the 20th June it will be turned on. Her spine is fixed which means she can not be straightened. This is good and bad. It’s bad as nothing can be done now but good as we do not have to make any choices and wonder if we chose right.

Sadly the Westlife concert was cancelled to a later date but she did get to the Boyzone concert which she thoroughly enjoyed. It was hard work for me as she is getting bigger and it was uncomfortable for Beth due to such a long journey. This is now something that will not be possible in the future, which is quite sad but that’s life.

Thanks everyone for your kind cards and gifts.

Update 30th April 2008

Sadly, Bethany has had some more seizures and they have not been very nice. She will be going into hospital on the 4th of June to have a VNS fitted and for the orthopaedics to look at her spine.

In the meantime, she has an exciting few weeks as she is going to see Westlife and Boyzone in concert.

Thank you everyone for your cards. Bethany loves opening them.

Update 30th March 2008

Bethany has not had too bad a month. She has had another seizure and we should be hearing any time now about having the vns fitted. She also had a visit to the dentist and they said her wisdom teeth are coming through. Unfortunately her body seems to have gone over again slightly so we guess this is her spine again. She was fitted for a new wheelchair which we collected last week but it seems too small for her. She is not happy sitting in it for very long so we are trapped in the house which Bethany hates. She is very excited though as she had Westlife and Boyzone tickets for Easter.

Update 28th February 2008

Bethany seems to have had a settled month which is good as she has had a horrible time with seizures of recent.

Thank you all for making Valentines day really special for her.

Update 1st February 2008

We visited Bristol this week and sadly it was not good news. Bethany has pelvic tilt and the doctors are unsure why. What this means for Bethany we are unsure of. The doctors are going to having a meeting over this. Her seizures are still bad and we have had a new drug introduced for her. Only time will tell if it works.

Update 2nd January 2008

Bethany turned 16 in December. Where does the time go! I am sorry to say her seizures are not very good at all. She has to have rescue meds daily at the moment and this is not good.

We have just come back from Orlando. Bethany loves it there, but sadly this was our last trip, as Bethany did not travel too well and had a lot of seizures out there.

I would like to thank everyone who sent cards and gifts for Bethany’s birthday and Christmas. A special thank you to Marcene Lee, Kate Dee, Judith and Julie Barrettt. You have all been so kind to Bethany. Thank you.

Update 30th November 2007

Bethany is having a lot of bad seizures at the moment. The doctors want her to have a vns, which will mean a small operation. There is a 5 month waiting list.

She has been busy in school and we are going to Orlando on Friday for two weeks.

Update 30th September 2007

Bethany has had some really bad seizures this month. Apart from this she is really happy and gaining the weight she much needed.

Update 30th August 2007

Bethany has had a good summer holidays. We have done lots of day trips. We went to see Beauty and the Beast last week in Plymouth and she really enjoyed this. Sadly, her seizures are getting worse. We are going to see the doctor next week.

Update 30th July 2007

Bethany has had some bad seizures this month. The doctor has now put her on the list for Vaguel Nerve stimulator. The list is about 18 months long. Apart from this she seems happy and is enjoying an all terrain buggy that Victoria and David Beckham bought her. We were able to take her right on the beach and she enjoyed hearing the sea.

Update 10th July 2007

Victoria Beckham’s mum rang here tonight as we applied to the David and Victoria charity. They have agreed to buy Bethany an all terrain buggy for disabled.

How cool is that!

Update 2nd July 2007

Bethany went to Bristol children’s hospital for some possible surgery on her right hip again. Thankfully the surgeon gave her an injection for pain relief which should last 6 months. We came home the following morning. We were all very relieved and happy. It seems to be doing the trick.

She is in her school play ‘Shrek the musical’ this week. She will be Maid Marian.

She had 1 seizure last week which was a shame as she has not had one in two months.

She is in a really good happy go lucky mood at the moment and is looking forward to the long school holidays.

Thanks to all for cards and gifts.

Update 4th June 2007

Bethany is due to go into Bristol children’s hospital on 19th of June. The surgeon is going to put some dye into her hip to see what is happening. He will then decide what to do from there. We are not sure how long she will be in for. We have not told her yet as she will just worry.

She has had a few minor seizures but nothing major. The doctors have started to reduce her epilepsy drug as they want to get her off it again.

She has put on a little weight which is good news.

Update 1st May 2007

Bethany has had to go to Bristol for an emergency outpatient appointment. She has had some pain in her right leg again. Sadly the bone has grown back, so we are waiting to go in as an emergency. They are going to have a look whilst Bethany is asleep. They think they will have to remove more femur and put her in traction. She has had a couple of seizures again.

We’ve also been to London Wembley arena to see Westlife in concert.

Update 2nd March 2007

Bethany seems to be in some pain in her right leg again which is very worrying. Her eyes say it all when we move her. She has had 4 seizures. She is her happy go lucky self though.

Update 8th February 2007

Bethany is doing so so this month. Her only real problem at the moment is her seizures which are really horrible when she gets them. She had 4 last week. She really gets upset with them. Apart from this she is really happy and cheeky.

Thanks to everyone who sends cards and gifts to Bethany. They really make her day.

Update 30th December 2006

Bethany spent a wonderful ten days in Orlando for her birthday. She really enjoyed all the rides although cat in the hat was her personnel favorite. We met up with Marcene Lee and Jennifer. We have not had so much fun and laughter in years. If we mention Marcene to Bethany she starts laughing. We met Marcene through this site.

She met with her surgeon who operated on her back. He is very pleased with her and we do not need to go back until Jan 08.

On a bad note her seizures have been playing up and she has had some really bad seizures. Her worst was on Christmas Eve.

We would like to thank everyone for the cards and gifts Bethany received for her birthday and Christmas. A very big thank you to Marcene lee and Jennifer for coming all the way from Atlanta Georgia to Orlando and spending four wonderful days with us. For all the gifts you gave to Bethany, Lindsey and I. You are a true angel.

Update 11th December 2006

We have just had a great holiday with Bethany in Orlando. She really enjoyed it this year. We meet up with Ms Marcene Lee who we meet through this site. Her daughter Jen came as well. We had great fun.

Bethany is doing well although having a few seizures.

Update 1st November 2006

Bethany is enjoying being back at school. She did have a large seizure a couple of weeks ago though. We are looking forward to going to Orlando at the end of November. We will be meeting up with Marcene Lee, a dear friend we meet through post pals. Her daughter Jennifer will also be joining us for 4 days.

Update 30th September 2006

Bethany is great at the moment. We are really having a good spell. She loves every moment of school and is doing really well. All the doctors are happy with her. We are doing a drug reduction at the moment as one of the drugs is not working as well as it did. She is on a new one and we are hoping this will not cause a problem. Thanks all.

Update 31st August 2006

Bethany is doing really well at the moment. She is looking forward to school and our upcoming holiday to Orlando later in the year. She enjoyed meeting Westlife and their concert. She sang and screamed all the way through. She was very quick to blow Mark a kiss and he made her day by kissing her on the check. Thanks Mark if you read this. You have made her truly happy.

A big thank you to all who have sent things to Bethany, especially Marcene and Julie. Thanks to all who nominated her to meet Westlife.

Update 29th July 2006

Bethany is doing really well. We can not believe she had major back surgery 11 weeks ago. She is so happy and all the doctors are happy with her. She won a contest to meet Westlife from our local radio station Pirate FM. Thanks to all that nominated her.

Update 30th June 2006

Bethany is doing really well. She now has her new wheelchair and is back to school part time and she loves it. We are now able to go out for around 2 hours at a time which is great.

Update 31st May 2006

Bethany is doing really well. She is still on some pain relief although we are reducing this. She is still not eating a great deal but this is getting better. We are going for a wheelchair fitting this week but will have to wait a month for it. We did buy her a special needs baby jogger on eBay and i must say this was a great buy although a tad too small for her. It will get us through this period though and i will certainly be looking at getting the next size up as they are so light to push. They are great on sand and uneven ground.

Thanks to all who sent Bethany gifts and well wishes. We are looking at her doing some time back at school before the long summer holidays. We are really looking forward to life getting back to normal, what ever that is. She is going to see Westlife in concert in August. They are doing a concert in Falmouth. We are taking her to Florida in December as a birthday treat. We hope to meet up with Marcene who has been a great support to us all and a true Angel. We met her through this site and will now be long term friends.

Update 16th May 2006

Bethany just spent 24 hours in our local hospital. She is severely constipated and has an ear infection. They were also concerned with her chest x ray. We are home again. I think we will get there but it will just take a little extra time.

Update 12th May 2006

Just to let you all know we are home. The operation went well and Bethany seems to have grown 2inches. We did have a problem with her bowel as it stopped working. She spent 4 days in HDU. She was starved for 48 hours and thankfully the bowel started working. A week to the day and we are home. She is in some pain and her back is badly bruised. She has been a very brave girl.

Update 27th April 2006

Bethany is very scared about her upcoming surgery. We do not know what to do for her to calm her fears. When we come home from hospital she will be stuck in doors for at least 8 weeks as she will need a new wheelchair. Hers will not be the right shape and due to her legs being different lengths an ordinary wheelchair will be no good. She had another major seizure this week; it lasted 3 to 4 minutes. She had a visit to the dentist which was very hard going; she will need to have two teeth filled and is on the waiting list for our local hospital as she needs a general anesthetic. This will be later in the year.

Update 15th April 2006

Bethany will be going in on the 3rd May to have her operation on the 4th of May. Lots of prayers and TLC please that the operation goes to plan and that it does not get put back.

Update 30th March 2006

Bethany is doing a little better this month. She is gaining some weight and is feeling a little heavier to lift. We have heard that her back surgery will be done by the end of June. We will keep you posted on this when we know more. Thank you again for all the cards and gifts. They truly put a smile on her face.

Update 27th February 2006

Bethany has had some seizures and her weight is not too good. She seems to brew her seizures and when this is happening she really isn’t good and she just wants to sleep. Her scoliosis is getting worse too, she must be so uncomfortable sitting and when in bed. She is now back on pump feeds, we are doing this slowly to begin with but hope to build her up.

Update 26th February 2006

Bethany had a major seizure on Thursday morning. She was in the bath at the time and lost consciousness, it lasted 2 minutes. She was taken to hospital by ambulance. She had a large one 3 weeks ago and the odd twitch since. She stayed the night and is now home. They are also worried about her weight as she weighs 21kg. Not a lot for a 14 year old. She will now be fed over night by a pump feed. She seems happy now though.

Update 30th January 2006

Bethany is not too bad at the moment. Her scoliosis is getting steadily worse by the day though. She has changed rapidly since the surgeon last saw her. Life is a bit bitter sweet at the moment as although we do not want Bethany to have any surgery, as she has had 5 in the last five years and all have been major, the sooner the better. This is having such a huge affect on her life as she is not able to do the things she likes to. Her new wheelchair she had in August is a completely different shape to her body, so we are not able to go far. She had a major seizure last weekend and then had several small ones through the day. This is such a shame as she has been very well controlled all but the odd twitch. It has not really come at the best time. She has had a few doctors’ appointments and the most worrying thing about them has been how Bethany has been at the appointment. She has been a very frightened child. She’s been shaking and whimpering throughout, so much so that the doctors decided not to examine her. She had three nights of dreaming in her sleep. She was not waking but crying and moaning out loud. I am very worried about this as I worry it might have a great effect on her wellbeing when she has surgery. She is still at school which is great. She did have a few days off though as she got a very mild infection of impetigo.

I’d like to say thank you to Marcen for being a wonderful friend to Bethany. You are truly an angel sent from god to us. Thank you to everyone else as well. I am sorry we have not got back to any of you but our lives are very busy at the moment.

Update 30th December 2005

Bethany has had a lovely Christmas and was thankfully healthy for the first time in 2 years to enjoy it.

Thank you to all of you who sent Bethany cards and presents for her birthday and Christmas. We’d like to wish you all a happy new year.

Update 18th December 2005

Bethany had her appointment in Bristol and she will be having surgery on her back. She is now on the waiting list for surgery and it should be within the next 6 months.

Update October 20th 2005

Well she is still in school full time. Which is great, she is enjoying her time there and I do not know what to do with myself.

We have an appointment on the 7th of December to see the doctors about her back in Bristol and we are due to see the Orthopaedic doctor on the 8th of December. So we shall have a night in Bristol. It will be good to find out if it is best for her to have surgery or not. She is waiting to see the pain team in our local hospital. We are going to try to work out what is the best way to deal with her pain.

She is really looking forward to having a great birthday and Christmas this year as the last two have not been to good due to her being in so much pain. So we hope she keeps on going as she is even though she suffers with pain in her back it is not as bad as she has had in the last two years.

Thanks for all the e mails, cards and gifts.

Update September 25th 2005

Bethany is back at school full time and although she is enjoying being with her friends she is in a lot of pain. We will need to keep a close eye on her.

Update August 16th 2005

We made it to Orlando and stayed in Disney all star music. The weather was warm. Over all Bethany enjoyed her holiday but sadly she was in a lot of pain. On one occasion we had to sedate her as the pain relief was not working. We did all the disney parks. She really enjoyed the shows. We also did some good shopping.

She is now back to school full time and enjoying it. She is at respite at the moment as we are having the bathroom adapted for her. She has a lovely Hydrotherapy bath that fundraisers bought for her.

She is on a waiting list to be seen by a back specialist at the Bristol children’s hospital. Sadly her back has got worse and her left leg is also pulling over to the right due to her scoliosis.

On the whole she is happy when she is not in pain.

Update August 25th 2005

Bethany is doing well at the moment. She is starting to put some weight on. She is really excited about her holiday to Florida in 8 days. All keep your fingers crossed for her to stay well for the trip and when she is there. Thank you for the cards and gifts. Thank you Marcene for your continued support.

Update July 2nd 2005

She is a lot better although still a bit tired and in a small amount of pain.

Update June 23rd 2005

Just a quick note to say Bethany is now home. She has had a very hard time but is getting a little better everyday. She has a nasty pressure sore on her elbow and her stomach is sore. She is eating tiny amounts of food. She
has lost a lot of weight. It was a very big shock for us all.

Update June 21st 2005

Bethany is still at Bristol Children’s Hospital. She has been a very brave girl. She will probably be there for at least another week. She is starting to ask for food, but has to wait until they know her bowel is working. She is much more aware of her surroundings and has listened to lots of stories over the weekend. She is fairly comfortable and we have seen some of her beautiful smiles. Just hoping she will be well enough to come home soon.

Update June 15th 2005

Hi, this is Bethany’s aunty, just letting you know that Bethany had a three and a half hour operation at Bristol Children’s hospital last night. She had to have her bowel untwisted and part of it removed. She will be at Bristol for a week and probably home then to convalesce. She is more comfortable since the operation but very quiet.

Update June 14th 2005

Just to let you know Bethany is unwell and in our local hospital. They think her small bowel may of stopped working or that she has a blockage. She will either stay in Treliske Hospital on Fistral Ward or go to Bristol Children’s Hospital.

Update June 10th 2005

We went to Bristol today to see the orthopaedic surgeon who operated on Bethany in November. He is really pleased with her progress and said he did not expect to see her this well so quick, which is great. We also talked to him about the back surgery. He feels it is the best thing for us to do for Bethany’s sake. He says there is a minimal chance the rods may come lose but no more than anyone else. So we will be going ahead with surgery. We will be having a holiday first though, as Bethany has had 4 major surgeries in 4 years and this will be her 5th in 5 years. We are going to go to Walt Disney World in Orlando. We booked to go in December for her birthday, but will now be going in September as she would of had surgery by December and will be convalescing.

Thank you all for your cards and for the lovely ones that were made for the competition. They were all winners in our eyes.

We will let you know when she is to have surgery.

Update May 20th 2005

Bethany has had her plaster off and is back doing 2 hours a day at school. She has a one to one and a special time table due to her being vulnerable. She is enjoying her time at school.

We went to Exeter hospital to see the Doctor about her back. She sadly has a 90degree Scoliosis due to having no hip and because when she has a growth spurt her spine could curve any were up to 180degree. She does not sit well at the moment due to pain from her back and difficulty with seating and they are telling us this will get a lot worse. We now have to decide whether to allow them to go ahead with surgery on her back. This would be major surgery and we are at the moment trying to decide what to do. It is not the easiest of decisions we have had to make. Dad thinks we should do it, but I am not sure as Bethany has had a very hard time with the surgery she has had, but I also know life would be very hard for her if we did nothing. We will keep you posted.

Thank you all for your letters and gifts.

Update April 5th 2005

Just a quick update on Bethany. We went to the fracture clinic today hoping to have the cast removed. They did remove it and replaced it with another. A bit of a step back but thankfully all Bethany seemed to be worried about was the colour. After much debate we end up with bright green. So they are saying another three weeks. Oh well, we are all a dab hand with plaster now. We have ordered a cover for it so she can have a bath.

She seems happy enough apart from if we go out.

Her Scoliosis has gotten a lot worse and she does not sit for very long at all. They are trying to get an appointment with her back specialist.

Thank you all for your e mails, post and gifts it really keeps her smiling.

Update 4th March 2005

Just a quick note to say sadly Bethany has fractured her right leg just above the knee. This happened on monday. She went to theatre on tuesday and is in a plaster cast. This has really set Bethany back as she now does not want anyone to move her. All the work we have put in to build up her trust has just gone out the window. She will be off school for 4 to 6 weeks.

She did a week of mornings and now that’s it again. It seems to be 3 steps forward and 2 steps back.

Update 20th February 2005

Just a quick update on Bethany.

First of all her pain in her right hip is getting less and less by the day. She still does not like it moved in certain ways. It is a lot better though. We never thought we would ever be able to move Bethany without her screaming. It is just so great. We are all so less stressed. She still does not sit for very long and by 2pm is normally having her daily nap.

We went to Great Ormand Street Hospital and they were pleased with her although she has not really put any weight on. Much to be expected for all she has been through, although she seems to be eating chocolate a lot. We have to go back in a year.

We are due back in Bristol for check up in July. It is amazing we do not have an appointment for 5 months. Never been heard of before.

We have just booked a treat for her for the end of the year. She will be going to disney for her birthday.

Thanks again for all the mail and gifts she receives. She gets the most mail now.

Update 7th February 2005

Bethany went for her out patient’s appointment at Bristol children’s hospital. They are very pleased with her progress and the fact that she can now move her leg. She was not able to do this for over a year due to the original surgery going wrong. They said still to expect some pain. We will be going back in July.

We are due to go to Great Ormond Street hospital on Tuesday for a check up on surgery she had in 2002. She started part time school two weeks ago. She did two mornings but then sadly got the flu. She has been quite poorly for the last week but is slowly on the mend.

Take care and thank you all for you cards, gifts and e mails. They really help to cheer her up.

Update 11th January 2005

Just a quick update on Bethany. She has had her Spika removed. Sadly she is in a lot of pain and this has really knocked her confidence. We are due to go to Bristol the end of the month and are hoping this is normal and the surgery has worked. We were only given a 50% chance it would work so fingers crossed.

She would like to thank everyone for the e-mails and the gifts she has received. It has put a smile on her face.

Many thanks to you all.

Story written 2009

Ayesha was diagnosed with a rare auto-immune disorder called Wegener’s Granulomatosis in October/November 2008 after 3 years of being misdiagnosed with severe asthma. This disease is quite rare and she is quite a rare case.

She has had chemotherapy and high dose steroids to treat it and it now seems to be in remission. However she has permanent lung damage and a very low lung function from when the disease was active. She still has maintenance chemotherapy and steroids to keep the disease in remission. However she still has a lot of problems with her lungs and she requires a high flow of oxygen 24/7 and a type of ventilator overnight. She uses a wheelchair when out.

Currently we have been refused a lung transplant due to the rarity of her underlying disease and it not having been performed before in Wegener’s. However, she been to see a specialist in her condition and the lung transplant team at Great Ormond street. The specialist seems to think it may be worth the risk to try and transplant and has asked Newcastle transplant team to consider if they will asses her now since he believes the underlying condition is in remission and will not return post transplant which is a main worry. So as it stands we are waiting to hear from the lung transplant boss at Newcastle for his views.

Update 1st March 2011

I received the call for transplant on the 13th of February at 12.26 am and went to theatre at 6.25 am. I was in ITU for 4 days and am now on the regular transplant ward. I’m moving in the right direction with some good days and some bad, but overall improving.

I think it is time to move on from Post Pals now as I feel someone else may benefit from the service more. I hope that is okay and thank you for all the support.

Update 30th September 2010

I had a very quick admission to hospital for only a few days, which was really good considering I was very sick when I went in! Also, I’m due to have a portacath inserted ASAP.

I have started 6th form which is a lot of hard work. I am taking Biology, Chemistry, Physics and Maths A-levels. I have fallen back a fair bit already and hope to catch up soon!

Thanks to whoever sent Sadiya an animal card game from Amazon and the Wii game.

Update 30th August 2010

Hi sorry for not updating in a while. I have some fab news though – I got listed for transplant on the 23rd of July!

Things have been fairly stable and I’ve been spending lots of quality time with my sisters over the summer holidays. We have been to Center Parcs and Flamingo Land which was a lot of fun.

I also got my GCSE results and I did very well with grades between A* and B. I’m going onto A-levels and hope I get my transplant soon so I can go to sixth form more. I also have my driving test in a few days time!!

Update 3rd May 2010

It been a fairly settled month and things with the transplant are slowly moving forward (there are just a few more tests to be done). Apart from that it has been a quiet month.

Thank you for all the birthday cards for Ayesha and Fatimah and thanks for all the birthday gifts too!

Update 1st March 2010

Everything is just the same this month and I am waiting for transplant assessment which is this month! So hopefully I should have some news soon!

Thank you for the world book day books!

Update 8th January 2010

Hello, December was both a good and bad month. I was in hospital until Christmas Eve and had quiet a nasty hospital admission causing me to end up in intensive care for a few days. However, this lead to my transplant assessment here at Newcastle being brought forward, so the ball is now rolling and I saw the transplant consultant in clinic on the 4th of January. There are still some tests to be done to rule out some further complication that could occur due to my underlying condition, so at the moment I am home again.

I had a wonderful Christmas at home and a lovely New Year. I would like to thank everyone for all the cards and gifts and thank you to the elves.

Update 10th December 2009

Ayesha is in hospital at the moment and is quiet poorly with her bad lungs.

She received some presents my mum took in for her today though and that cheered her up – I think the card said from Milly and Alice!

Update 4th December 2009

The last month has been pretty good as I’ve been stable and out of hospital. I managed to get to a Jonas Brothers concert too and meet them – it was fabulous!!

Also, yesterday I was at a Brave Hearts Awards ceremony and I won a bravery award!!

Thanks to Post Pals for the gumball machine – they have nearly all gone!!

Update 31st October 2009

I have been doing okay over the past month. I did catch swine flu but thankfully it wasn’t very bad and I was only in hospital for a day. I thought if I caught it I would be very ill because of my low immune system.

Apart from that all has been well and I am enjoying receiving cards and postcards in the post. Thanks everyone for the post.

Story written 2008

Armani was diagnosed with Neuroblastoma in September 2007. He has stage 2 N-MYC positive so is high risk. He underwent 8 rounds of chemo every 10 days for 80 days. Then he went on to have surgery in January 2008. He has also had a stem cell harvest followed by high dose chemo. He is now on retinoic acid whilst waiting to start 3 weeks radiotherapy.

Armani is an inspiration, he has continued to laugh and smile throughout.

Armani is now 23 months old and like any other 2 year old toddler. He takes his tablets without complaining and is such a brave little hero.

Update 3rd July 2008

Armani is due to start radio therapy in a few weeks time for 3 weeks, his hair has now come back and he is loving life so much. He is doing remarkably well and we hope and pray he continues to do so.

Thank you all so much at Post Pals. Armani loves to receive his very own mail in the post and the surprises waiting to be opened. You are all stars. I would like to thank Hwee hoon, Hayley Thorn, Kate Dee, Sarah, Susan, Laura H, Isobel and everybody else that has sent Armani post these last few weeks. They put a smile on his face every time he opens them. Thank you all so much for your generosity.