C/O 56 Read Road
Ashtead
Surrey
KT21 2HS
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Tom S's Parents/Guardians

Benedicte

Tom S's Siblings

Zack 27/12/1999 (who has autism) loves lego, spies and superheroes. Kesia 15/12/2001 loves reading, writing, crafts and gym.

Tom S's Interests

Playing with cars and trains, puzzles, imaginary role play (school, mums and dads, farms etc)

Tom S's Favourite Colour

Red and Orange

Is Tom S able to read?

No

Is Tom S able to use hands?

Yes

Is Tom S visually/hearing impaired?

No

Does Tom S suffer from any developmental delay?

No

Story written 2008

Tom was diagnosed with Pulmonary Valve Stenosis and Juvenile Myelomonocytic Leukaemia at 11 weeks old. A few weeks later, it became clear that he had severe feeding problems, as the chemotherapy brought the leukaemia under control. He was also diagnosed with Noonans Syndrome.

When he was 6 months old, we brought him back to England from France, and were told by Great Ormond Street that he may not need a bone marrow transplant. We are very lucky that the leukaemia has stabilised and he is currently under no treatment.

He has had open heart surgery and will need ongoing surgical intervention as he grows older. He is tube fed via gastrostomy and now enjoys mummy’s home cooking through his tube. As a result his heath is much better than it was.

He is a happy, lively, wonderful little boy, but has huge problems with fatigue. He is dependant on his wheelchair and struggles to stay in school as viruses knock him down so easily. Pain at night in his legs and tummy stops him from sleeping well, but he is always chirpy in the morning. He is my little superstar!

Update 11th July 2010

A lot of the time, I find it really difficult to see Tom as a chronically ill child, and one with complex special needs. He is in a mainstream classroom, he has no communication difficulties, and he runs around, has friends, and shouts at Mum a lot.

Then he has sports day and I realise that I'm not the only one with this problem. Even his teachers find it hard to realise that he's running too much, that his extra feed is really essential to his health, and that all the fussing I do about pacing, and feed, and all those other little things are the reason he is so healthy at the moment.

He's had a couple of really nasty infections in his stoma for the past three years. Non stop. And yes, we've tried several different kinds of antibiotics, both oral and local, many different creams, bandages, steroids... but nothing works. So the infections become a new kind of normal. Because he's such a stoic and happy little chap, the fact that he's got the equivalent of an infected ear piercing (times by a lot) in his tummy and has to keep the "earring" in, is not something he complains about. He'll squirm a bit, but on the whole, just gets on with his life.

On the day of his show (more on that in a little bit), I got a phone call from school to tell me that his G button had got pulled out. It's not a life or death issue, but as soon as the button comes out, all those little cells say "here's our chance to fix this hole that shouldn't be here". So we're on a clock. I know how to put the button in of course, but no one at school does. Last week, I was twenty five minutes away, and Kesia was half way through a vital session of psychotherapy.

So as soon as she came out, my adrenalin went into overdrive (outdated fight or flight response - just annoying). My whole being was bent on getting to Tom as quickly and safely as possible. I got home to get the supplies I needed (no spare button, but I did find a wiggly - that is a PEG... like a button, but with an attached tube, so it dangles from the stoma), then rushed off to Sam's house as she had taken Tom home.

Without the button in place, the poor lad's infection was looking really horrid. So I was able to clean it all up as best I could - loads and loads of Betadine was, a bit of bonjela to numb the area before inserting the wiggly. Luck being on my side, the wiggly is much finer than his button, and the stoma hadn't closed up too much, so insertion didn't hurt. Bless Sam; she then fed both of them. Needless to say, Kesia had picked up on all my adrenaline filled anxiety without any of the calming words I was saying. I was not worried, simply knew I had a job to get done within a time limit.

The next step to that afternoon was to go and watch Tom's show about a scarecrow - Tattybogle. Tom played a bug and did beautifully. But it is one of the times when I notice quite how different he is to his peers. So, so tiny! With the move to junior school happening, and many new children joining the school, Tom's cocoon of understanding and helpful classmates is being breached. He is so comfortable that his awareness of these differences is very limited.

So just now, Tom feels like a very vulnerable little boy! He's doing so well with his wiggly. I want to keep it in place because it's easier to clean his stoma than with the button, and I'm hoping that as the stoma closes up around the thinner tube, some more healthy cells will help fight the infection. This is just me, a mum, talking, but the nurses and doctors haven't got an answer either.

Finally, a huge thank you to all of you who sent post. Tom loved the letter from Maria and Michael. Jane, as ever, Percy's letters continue to enchant Kesia, and I am forever grateful to the wiggly bags that are making their way here as we speak!!

Update 29th May 2010

It's been a whirlwind of a month again! Tom is doing really well at the moment. His pain medication is working, so finally after six years, he is sleeping most nights (fingers kept tightly crossed). It seems that the small amount of growth hormone he was given in February did him a lot of good, so we're just waiting for things to be set in motion so that the treatment can begin. I have to say that I have not yet told him that it means daily injections.

Unfortunately, his behaviour has exploded, and we're trying to cope, Nick and I. Both Kesia and Tom are deeply angry and upset, which is making home-life tense. I'm really pleased to say that services are coming together for Kesi though, and she's going to be getting psychotherapy to help her. As for Tom…  back to basics and a lot of time-outs.

Zack is doing well at school. We don't see him often but speak every couple of days!

Other than the daily ups and downs of Tom's feeds and stoma infections, his health is more stable this year than ever before. Long may it last!

Thank you for our post and Wendy's home made cards are simply beautiful! The pirate ship, blanket (now named blankie) and book was amazing!! Tom got to it so fast that I haven't found out who it was from though.

Update 30th April 2010

Life just seems to go on! So, Tom has had a really good month! He's learnt to feed himself using a syringe - no mean feat as it's quite tricky to hold the syringe, pour the feed, unclamp the tube, plunge and repeat!!

Nights have been difficult as he's been in quite a lot of pain, but we have at last seen the pain consultant and are upping his meds as well as putting some work in with a psychologist.

I've won the growth hormone battle!! There's funding etc to put in place, but the consultant says he responded really well to the test, and his predicted adult height of 4'6 is such that it's worth going for it. Tom doesn't yet know it means an injection every day… I will let you know when we get started!

Tom has really enjoyed the post this month, and I am slowly beginning to catalogue it to say proper thank you's. The fridge magnets were particularly successful!

As for the other honeys! Zack is doing well at school and we got through the holidays. Kesia had a good break in France with her grandmother, but the harsh reality of life is creeping back, so I'm really pleased that she is about to start some psychotherapy.

Nick (Daddy) is working hard and keeps a roof over our heads and food in the fridge. I think he wishes there were more smiles at home, but is often touched by the post from you all, so thank you.

Mummy (me) has had a hard month, with a bad flare up of fibromyalgia and depression, but today there is a glimmer of light.

Thank you all so much. It made my heart thrill to see Vikki on telly with Russell Howard - we need more of that!!

Update 5th April 2010

This is a much delayed update, for which I am truly sorry. Not least because PostPals has allowed us to get through the last few months.

So... quick update before I go into more details. Tom, my official little Pal is doing fairly well at the moment. He's had to undergo a lot of tests lately to determine why he isn't growing. They were done at my insistence, which is tough. He has so many ongoing issues that the doctors don't think of growth too much, but I have to think about his future and how I will answer him if he asks me why he is so short. So he’s had lots of injections and blood tests which are his least favourite things in the world. We've been using “Buzzy”, a little vibrator which helps with the pain, but it's the anticipation that really upsets him. I suspect the results will be that there is nothing we can do to help him grow, but at least I will have done everything possible. (Little secret: he's so gorgeous as he is, it's a difficult call to consider treatment which would make him shoot up!)

Tom loves the cards, especially the ones that have bright colours and pictures, or things to count. He also loves stickers, and the passion for little cars is still very much alive. He's brilliant at pretending games, so a piece of string and a cardboard box and he's happy.

On an aside, I've finally cracked the huge problems he was having with reading!! We're reading Peter and Jane ladybird books, and he's doing really well – even enjoying books at last.

Next chronologically is my darling girl, Kesia. She has had a very hard time lately, and I have to thank Jane and Percy the Poodle for being such steadfast friends. Zack's departure to residential school has been tough on her, and she is sinking. In February, after already struggling with food, she suddenly stopped eating altogether. This was extremely worrying, and went on for three weeks during which we were happy if she ate a slice of bread each day. It's taken us a lot of work, tears and banging on doors, but she finally has an appointment with a psychotherapist at the end of April. She's also found school very frightening, and her whole world seems to be falling apart. Although she rarely says much, I know that receiving letters from Post Pals is a real lifeline for her. I find the letters all over the house, and they move around as she reads them and leaves them for later. Should one not be where she left it, she becomes distraught!! Maybe one day I will be able to teach her that she should keep them somewhere safe!

Then of course we have my oldest little man, Zack. He is not a Pal, but often feels like one as his special needs have dominated our family in the last year. Today was a very emotional moment as I opened a parcel addressed to him (understandably, I do check parcels before passing them on). I was astounded to find the most beautiful handmade quilt. And not an ordinary quilt: a weighted one. The detail of the work is phenomenal, and I cannot begin to imagine the time spent on making this. I had tears in my eyes as I laid it on his bed in his brand new bedroom. For reasons of safety, we have had to go up into the loft and create a small “bedroom” for him during the holidays. It just wasn't safe for any of the children to share. So he has a lovely new room, with this stunning quilt. He will be coming home this afternoon for the Easter holidays, and I am quite sure he will love it. I will be posting a photo as soon as he is here.

Talking of photos, I must explain Tom's recent photo. Given our family, we have chosen to be very open about the boys' conditions. Not long ago, Tom asked for a t-shirt. He wanted it to include his name and that he has “Nrome”. It took me a few days, but I finally realised he meant Noonan syndrome! He looked very exasperated at the length of time it took me to understand!! Having posted this on Facebook – proud Mummy of a little boy who accepts himself faults and all – imagine my surprise when a few days later, a t-shirt matching the exact description arrived at home, thanks to my mother!

It's been a hard few months, but right now, life feels ok. Long may that last!!

Update 27th November 2009

Big changes! Zack is settling in well at school. It's up and down over there, but at least home life can settle a little. Zack has really loved the Post Pals letters, especially one from an elf!

Kesia has been struggling quite a lot since big brother left, and the cards from the reindeers have helped her a lot - she was so excited to know that she and her brothers were on the good list!

Tom has been quite poorly this month. His legs and arms are hurting more, and often during the day now which is upsetting him quite a lot. He really likes getting post, especially when there are pictures as his reading is very limited. We are trying to find out why he hurts, and mostly a way of managing the pain, but without luck so far. In December he will be going for a growth hormone test to find out whether or not we can try growth hormone treatment which could help his appetite and pain as well as his height. He is tired, so not eating much at all, and trying to fight off the winter bugs.

On the whole though, things are better, but little Tom is finding life a little too painful for his liking!

Huge thanks to Jane, and to the reindeers and elves.

Update 31st October 2009

What a very strange month!! Zack started residential school at the beginning of the month and we had two weeks of strange peace and quiet. He has now been back for a two week half term and we are all feeling the stress and sadness - none more so than Tom and Kesia. He goes back to school next Tuesday, and in a strange way, all of us including Zack will be happier.

So Tom... He is as hyperactive as ever, growing more exhausted as the term goes on, but absolutely denies being tired!! The pain at night is testament to my little boy's character being greater than his body's strength! His eating is not very good, but I had a great appointment with a dietician who at long last supports the home made blended food I use when tube feeding.

We are still trying to address the pain issues, but until Zack has been away from home for a while, the doctors feel that they cannot do anything. Another big battle is the issue of growth and growth hormone. I am trying to gather strength for this battle, as Tom is so incredibly tiny and already very aware of his height.

We have so far avoided flu and other nasties of the winter - the mild weather has been really good for Tom, and even his asthma hasn't reared its head yet. He will be on the list for the swine flu vaccine I'm told so I hope he will avoid the bug.

Mum and Dad have crashed... We are trying to keep going, or at least not crash together, but it's a bit tough!!

Thank you so much to Post Pals. Kesia in particular really benefits from it. Although this is more of a sideline, in our family it has proved critical. For such a little girl, she has much to bear, and does it with remarkable fortitude. Once Mum and Dad have dealt with the two boys, there just isn't enough energy to dedicate time to her... receiving letters and cards really do make a difference. Thank you. Particular thanks to Jane and Percy the Poodle. Kesia cherishes this relationship far more than her words are able to say.

Update 29th September 2009

I think that the end is in sight! This last year has been traumatic at best, but I think that all the tears and hard work have come to a good conclusion. Zack is about to start school at a wonderful residential special school for boys with Asperger's Syndrome. It's been a hard battle, but the fact that he is looking forward to Friday is a joy to behold.

So... that said, our little Tom comes to the fore once more! Following his week long stay at hospital this summer, I am seeing his consultant this week and will update soon! We are also seeing the cardiologist next week for his yearly check-up. That's always a time when the reality of Tom's condition is thrust upon us a little more.

He has been very tired since school started, and the difficulties at home mean that he often feels very angry without knowing why. I hope that this will settle once Zack is at school. A big breakthrough is that we are now using Widgit symbols to help him read, and he is loving that - finally he can access books like the other children!

I'm happy to be able to concentrate a little more on him, as he has been suffering a lot of leg pain at night. Long may this last!

A big thank you to Wendy for her beautiful cards, and also to our faithful friends, Jane and Percy. Apologies to anyone I may have forgotten!

Update 30th August 2009

Well, summer is over and we survived it!! We've had lots of help from social services, and thanks to that, the summer has been a lot better than expected.

Tom has had a week in hospital to try and figure out why his legs hurt. The nurses noted that he was indeed in pain and did not want attention. Unfortunately that's as far as we got, and in the meantime, he's suffering a lot of pain even in the daytime. It's wearing him down a bit and he's very tired. We have a lot of hospital appointments in the next few months.

Kesia still really loves hearing from Percy the Poodle. She has just spent a couple of weeks in France with her grandparents, flying all by herself for the first time.

Zack has done well this summer, although his anxiety levels are rising as term approaches. Although the LEA has approved funding for his new school, the school itself is waiting for September to be able to assess him. Fingers crossed that he'll be able to start soon.

I’m glad to say that this month has been better than the last few. We're not out of the woods yet, but the light seems to be at the end of the tunnel!

Update 3rd August 2009

Another eventful month here! Tom, being our little Pal here, should go first!

Tom had a wonderful if tiring end of term. He loved his school trip and the school had made sure that he could have a seat in the coach and take his wheelchair. He sang beautifully in his end of term show and said great goodbyes to his teacher. We're really thrilled that he will be keeping his LSA at school and has a lovely new teacher to look forward to in year 2.

His health is up and down and I've noticed that he's more reliant on his wheelchair. Whether that is because of his medical condition or because he wants to do more as he gets older, I don't know. 

He's eating really well - he tried omelette and liked it, and has tried peas and carrot, so I'm very proud of him. Unfortunately, I've slightly reduced his tube feeds as a result, and he has lost weight!

He'll be spending next week at Epsom General Hospital, so any post would be really lovely the week of the 10th. I can take it to him easily. He's in for observation as he's in a lot of pain at night, as ever.

Kesia is doing well and loves the regular correspondence she receives from Percy the Poodle and Jane!

Zack is not doing well at all. We are still waiting to hear from the school that the LEA finally approved. Unfortunately, his violence towards me has increased, and the police are now involved with our family - very kindly I might add. He's such a confused little boy and has so much rage in him… it's a heart breaking situation to be in, as his rage and behaviour put us at risk.

Mum and Dad are surviving. Not much more than that, but hoping that a school decision will help us all.

Huge thanks this month to Jane and Percy the Poodle, regular as ever! Kesia is getting lots of post, but Tom and Zack very little. I love that people realise life as a sibling is hard sometimes. Tom really loves getting cards - simple ones are great since he doesn't read. Zack also likes cards, but more for the pictures than the text - unless there's a joke or scientific fact in there!

Update 30th June 2009

Tom's had a tough time this month. He's had bruises all over, so had to have a blood test to check that his leukaemia wasn't starting again. He hates bloods, so that was a difficult day. Luckily that's ok. We think that his platelets just aren't working very well.

Although he had been eating really well, he's found that harder again, so we're more dependent on the tube once more. Infections in his stoma have made that sore, particularly at night when he has a feed all night. More leg pains again too, so the poor thing has been sleeping really badly.

On bigger news, we're looking into growth hormone to help him grow. That's going to involve some nasty tests, so I will let you know when he is due in hospital for those.

Family-wise, things broke down quite badly a couple of months ago. We've had a lot of intervention from social services, and Zack is now at the respite centre every week day. We are expecting a decision about a special residential school for him in the next few days.

A huge thank you for all our post and special thanks from Kesia to Percy the Poodle as she loves his cards and letters!

Update 30th April 2009

It's been a difficult month for Tom. He's very stressed by the home situation. Big brother Zack continues to ignore him or to be very aggressive towards him. That's affected his fatigue and pain, so he's not doing very well.

The normal bugs around have hit him particularly hard, and a bad attack of croup led to a trip in an ambulance to hospital. Luckily he wasn't admitted, but we now have a nebulizer at home. Our big problem is getting food into him. Even with the tube, his little body is just saying no, so he's vomiting a lot.

He keeps smiling though and tells his Mummy he loves her about a hundred times a day!

Home life continues to be difficult. I had a breakdown about six weeks ago and finally social services are stepping up. But it means Zack has to be in respite nearly every day and is really struggling to understand what is happening. Kesia has been his primary carer for over a month now and is a remarkable little girl.

We love receiving cards from Post Pals - it really makes the difference between a good and a bad day. A big and continued thanks to Jane and Percy for keeping such regular contact with Kesia.

Update 28th February 2009

I'm sorry I didn't do the update in January. It was a difficult month, but made so much easier and brighter by Post Pals - there was something new on the threshold every morning! I'd especially like to thank everyone for paying as much attention to Kesia and Zack as to Tom. While Tom has a lot of medical issues to deal with, we often think of Zack as our most needy child with his autism, as it affects all the family. And Kesia who is stuck in the middle copes as best she can.

Post Pals is teaching Zack to share, which is the most amazing sight in the world. He received a parcel one morning this month (mystery sender, thank you!) and immediately, of his own accord, proceeded to divide it into 3 equal parts!!

Tom has been getting very tired this month and struggling a little with school. On the up side, he's been using his power chair, which makes him feel and act far more grown-up. He crashed into a lamppost yesterday morning and hurt his foot though! We think he's OK, but we’re keeping an eye on it. Although we've had half term, the school year is obviously becoming hard work for him physically and he's coming down with a lot of little bugs which roll into one another. Mum's getting better though - slowly!

Thank you all so much for all you do. We all really appreciate the support and love that comes through our door so frequently. I've been a little better and have started trying to keep track of everything, but I'm not up to speed yet. Percy the Poodle deserves huge thanks for his letters to Kesia though!

Update 1st January 2009

The last month has been very difficult for the whole family. Tom's health has been reasonably stable, although he has been very tired at school. Unfortunately, he's been ill throughout the Christmas holiday, with lots of coughing veering to asthma, vomiting and now a tummy bug. This is quite typical of Tom when he's tired. Big brother Zack has had a hard December, as always, with all the changes. His autism makes the holidays especially difficult, but he's done well over Christmas.

Tom's sister, Kesia, is really struggling. She received cards from the Reindeers this year, oh my goodness thank you! I'd read about the scheme, but was thrilled to see that she was the one receiving them. It was as if the Reindeers knew how sad she is. She is deeply unhappy, and is refusing to eat and drink which is causing us a lot of worry. Zack's community nurse has started working with her, but we anticipate the need for psychiatric help sooner rather than later. One of the few things that make her smile are her cards from Post Pals, so THANK YOU all!

Mum collapsed with all of this going on, so December was bad. Social services are not yet responding despite professionals telling everyone that we are heading for family breakdown (awful words to hear). Tom sleeps very badly due to pain, and this has been worse with the end of term, so my sleep is very disturbed, causing complete exhaustion. 

Ooh, this sounds like such a moan, I'm sorry! My main update is that this has been a tough month for us, and Post Pals more than anything or anyone else has made us smile and feel less alone. I cannot thank you all enough.

Due to my ill health and general collapse, I wasn't able to prepare Christmas at all. Luckily we spent the holiday itself with grandparents, but we had no tree or cards or decorations. Thank goodness for Post Pals. There was a card or gift for one or other of the children nearly every day. I am so so grateful!! The extra cards came at just the right time for us - thank you. I can't put into words the gratitude I feel for all those who sent things to the children. They shared everything between themselves, in some really wonderful moments. Thank you for giving them Christmas in a difficult month.

Update 7th December 2008

Tom is doing fairly well at the moment. With the winter on its way he's fighting lots of infection, especially in his stoma, which means a lot of antibiotics. His recent cardiology appointment went well, so it'll be another year before we go back.

He has really struggled with fatigue this term and is very dependent on his wheelchair. Last week, he took out his new power chair for the first time. It was donated by CHIPS and is changing his life. He drives it on his own, and is playing around with his brother and sister, independent for the first time. He is being very cheeky, and behaving more like a five year old than he has before.

Tom took his Post Pals box into school for show and tell on Friday and was so proud to show off his special letters. Thank you everyone! Thank you to Tina for her handmade card to all three children and to Julie for being our first poster. Thank you for the cards from Tasmania, Finland, America and all over the UK. Thanks also to Graham, what an amazing gift. Tom loves the remote control card and all three children have really enjoyed the colouring. It was so thoughtful to include batteries! We all hope you're doing well yourself. Tom also loved the Halloween spider he received! 

Post Pals puts a smile on Tom's face, and Zack and Kesia also look forward to the postman coming every day now. This has been a very tough few weeks for me, and every time I see a letter addressed to Tom, I smile. Thank you, from the bottom of my heart.