Jack B

23 July 2011

Story written 2006

Jack developed a limp just after Christmas 2004. We spent weeks taking him to doctors, then to casualty, time and again, before he was admitted. He was diagnosed with irritable hip, arthritis, then a leg infection. It was only weeks later when two lumps appeared in his month, that the Neuroblastoma cells were discovered.

Since then Jack has undergone two chemotherapy regimes, which had no effect on the cancer, spread to every bone in his body. He then had highly radioactive iodine therapy, which cleared most of the disease, surgery and then high doses of chemotherapy.

We are hoping to raise enough money to take him to New York for antibody treatment. The chances of Jack surviving over a 2 year period are 20%. We believe the treatment in the U.S will increase his chances against the odds which are currently stacked against him.

Update 3rd May 2009

We are very sad to announce that Jack has passed away. His Mum sent this message:

Jack was a magnet for many many people. Those who met him were caught by his force.

He was my super Nova, the star that shines brighter than any other but has much too short a life span, so bright it burns out too quickly. It was the love that was poured on Jack that helped the super nova emerge. Thank you to all who showered him with cards, you showered him with love, the water he needed to grow. You helped him grow.

Sympathy cards can be sent to the above address and please keep sending cheerful post to Connor and Rhian.

Update 1st February 2009

A huge thank you for all the cards and letters sent to Connor, Rhian and Jack. Jack will be in the U.S. until March and so we appreciate more than ever the cards sent to Connor and Rhian who are really missing us. Its difficult being away from them, difficult for Jack, and difficult for me, but your cards remind us how lucky we are to be here, still fighting with so much support. Thank you so much.

Upate 20th December 2008

Jack’s scans this week showed multiple relapse. We have very limited options now as his bone marrow is damaged and his blood counts are flat. We’ve had yet another ‘talk’ from hospital and it now seems the sensible thing to do is put Jack onto a ‘holding’ chemo. We are devastated, we truly thought there was a chance he’d beaten this abhorrent disease this time.

For now, we’re concentrating on spending quality time together. Personally I’d like to try another trial, something that will prolong Jack’s life but at the same time give him a good quality of life… but all that is left is truly experimental, untried by any child. Jack is tired fighting, his body is exhausted and none of us really want him to go through any further experimental treatment. We have no path right now. Jack has asked if we could take him on holiday somewhere hot and sunny. That’s going to be difficult this time of year but we’re working on it.

Thank you for your kindness and support throughout the past few years.

Update 1st December 2008

Jack’s been back in hospital again – this time with Cystitis and BK virus. The Cystitis proved very painful and had him running to the toilet every 7 minutes (yes, sadly after two days I began timing him). This was day and night, so little sleep was had by any of us. After two weeks the pain seems to finally be abating and the weeing is down to every 20 minutes.

A huge thank you to anyone who has sent cards to Jack or to his brother and sister. I am in awe as to how they – his siblings – cope with the constant disruption in their lives.

Update 2nd November 2008

A huge thank you to Sophie P. A parcel addressed to Connor, then to Rhian, then to Jack, arrived all at separate times this week… the only one that had a card inside was Jack’s… from Sophie P.  And as they were all packaged the same I’m assuming they’re all from Sophie!! Thank you so so much Sophie. The kids have had a bad week (off school for half term) but with us trying to ‘give back’ to our work (having been absent with Jack for 2 years) taking time off to be with them wasn’t the honourable thing to do, so they’ve been completely bored inside all week with Grandma who has arrived up from Devon.

Our children absolutely LOVED receiving something in the post, thank you so very, very much! Making them happy has also made us happy!

Update 11th October 2008

This week we received the news we have waited so very long to hear – Jack is finally NED (no evidence of disease). Jack has relapsed 4 times with this awful disease and each time it returns, it becomes more aggressive… so we are elated at the news and give thanks wholly to God, and continue to ask for your prayers that Jack has been completely healed.

Although NED, he remains on a number of medicines including low dose chemotherapy. His energy is beginning to return, and he is excited at finally being home in the UK, returning to school and a leading a ‘normal’ life.

We would very much appreciate some cards being sent this way as throughout his treatment schooling was one of the lesser worries we had, however Jack is behind with reading and maths and we are trying to encourage him in every possible way to read. Your cards would provide a fun and interesting way of helping!

Thank you for the wonderful support.

Update March 2008

Jack had a round of chemo at Great Ormond Street and was due to have a second round but on the day it was due to commence a blood test showed a sudden and dramatic fall in Jack’s Platelets.  There had been a two week break following the first cycle of chemotherapy, and during that two week break the blood counts had steadily improved.  Our consultant at GOSH could only assume that the cancer was taking hold of Jack’s bone marrow.  The chemotherapy could not be proceeded with.

We emailed Sloan Kettering where Jack is treated in New York – the High Dose Antibody protocol we had been waiting for had now closed.  If we stayed in London, there could be no further treatment unless the blood counts improved.  Days later Jack’s blood counts saw another huge drop.  We could not afford to sit around waiting any longer.

Jack, unable to have the chemotherapy in hospital was back at school and loving it.  Outwardly he showed no signs of disease, with the exception of the pallor of his skin.  After 3 years of treatment he is the same happy and loving child, as full of life as he was all those long years ago when life was once “normal”.  Jack has not tired of the fight.  The problem is our doctors appear to have tired of the fight.  And that is the conclusion I have reached with Sloan Kettering.

In the children who relapse time and again, the current therapies are only killing off the weaker cancer cells, the ones  that have spread…. but a different combination of drugs is needed to then kill the stronger ‘root’ cells from which the weaker ones grow, spread and multiply.  With the root cells left alive in the body, they re-form and begin to grow again and again

In Vermont something has become available which could prove invaluable for many of these children.  A resource whereby diseased areas can be biopsied and the sample grown in the laboratory, then tested against numerous agents to establish which is the most effective against the particular strain of disease that child carries.

We arrived in Vermont now having a week of tests, with CT scan on Wednesday and Mibg injection… then MIBG scan on Thursday morning and Bone Marrow biopsies on Thursday afternoon.  On Friday Jack will begin Nifurtimox, a radiosensitiser which should have the ability to make the cancer cells more sensitive to the chemotherapy.  Thursday’s scan will tell us what the position now is with the cancer, whether it has spread quickly, or whether the one cycle of chemotherapy has killed it off.  The bone marrow biopsies will be tested to establish what agents may work best at clearing the marrow.  By Friday we will have a better idea exactly where we stand.  For now it is just nice to have a new doctor, one who has as much fight as Jack has left, and a seemingly as strong a will for Jack to live as Jack has…

Update February 2008

Jack is back in the UK for the moment following the death of his Grandfather.

Update January 2008

We’ve had a pretty tough year which culminated in intensive treatment throughout November and December, most of which we truly doubted whether Jack would come through in time for Christmas… but the week before Christmas saw our prayers answered and Jack underwent a dramatic turn-around. He got out of hospital just before Christmas, with only one appointment left before the big day. That appointment was one we all dreaded – his scans. They would show us what effect the treatment had had on the cancer growing inside Jack and whether the past weeks of torment had been worth it all, or not.

Needless to say, December was a hectic month, where we balanced hospital, work, Jack’s siblings, homework, school panto’s, Christmas presents (which were the last thing we felt like buying)… and the one thing we defaulted on (as there was none available at hospital) – updates and thanks via the internet. Jack received cards every day at hospital, that was his one bright moment of each day for most of his time there and it also gave us (his parents) the courage and the strength to continue fighting, to not give up. Although we have not been able to get back to those who have sent little gifts and cards, this is the best way I can now try and portray our heartfelt gratitude to ALL who cared enough to send a card or little gift to either Jack or his brother and sister, Connor and Rhian – who have had to grow up an awful lot in the past year. For Jack, we are under no illusions.

Jack’s scans came back clear – but this is his 4th relapse. His treatment, we are told, is palliative only. This will not prevent us from trying everything we can to prolong his life… even if it means returning to America. Jack has so much energy, so much vitality left, he wants to continue the fight and it is his determination that pushes us on.

For 2008, we have much hope and much renewed faith in God. We have much to be grateful for, the support of so many from Post Pals. We were overwhelmed by the wonderful kindness shown to Rhian, to Connor and to Jack by the Christmas Elves. Just before Christmas, while we were in hospital, a friend offered to paint our dining room (which was in an awful state). The internet was disconnected, and that’s how it has stayed until this week. And so our personal thanks have been temporarily put aside in order that we might write this update as a huge thank you to all of you for the amazing support you’ve given to all of us during 2007, and to the unbelievable happiness brought by the Christmas Elves at a very much needed time.

Many, many thanks to the Post Pals team for making this all possible, for your continued commitment and dedication to the wonderful job you do!

Yvonne, Richard, Connor, Rhian and Jack.

Update  February 2008

Jack has relapsed once again in his bone marrow and possibly in his shoulder and hip so we are back in America for more treatment.We’re supposed to start Beta Glucan with 3F8 next week, this will last two weeks, then we’ll start a 3 week course of High Dose 3F8 antibodies.  After that I will be pushing for low dose chemotherapy, there is another trial in a different part of America which we are looking into.

Our current address for post is;

Jack B

Ronald McDonald House

Rm 612,

405 East 73rd Street,

New York,

NY 10021

USA

Update 19th December 2007

Jack recovered quickly in ‘medical’ terms from the pneumonia, but the high fevers continued. He communicated his feelings in his new found word “rotten,” but suffice to say he felt unbelievably poorly, listless, and with no appetite his weight plummeted from 17.9kg to 13kg. A nose tube was inserted and Jack hated it so much he pulled it out inch by inch by himself one evening. His sickness was compounded by the racking cough.

Last weekend finally saw a dramatic improvement and from there, a dramatic improvement evolved… the pain stopped and Jack started walking to the toilet with the help of an arm, then later, unaided. Suddenly he wanted to play games again, to colour and draw, and began asking about his new dog, whom he’d seen for only a matter of hours. Later in the week we came home.

Our scans are scheduled for Thursday 20th December, at Gt. Ormond St. hospital. Today Jack went to school for a full day. He came home with trousers and shoes covered in mud, complaining of being hungry, despite having eaten a proper school lunch. His face is the same colour as his class mates; it has lost the awful grey pallor and has a rosy tinge on his cheek bones. As each day passes we have more and more hope. For me, blind faith will bring him through this.

Thank you all for the amazing support that hasn’t just brought Jack through the uncaring phase, but has shown us indescribable love. I think we have in the region of 500 cards from the US, the UK and some other countries, but this number continues to grow on a daily basis. Yesterday we picked up some packages from UCH, and then collected another 50 cards from our local hospital. Each card holds a special message; many of you continue to pray for Jack. Is it the prayer? Is it the positive thoughts? Whatever it is, please keep doing it – it is working. 

Update 19th November 2007

This was one of those weeks. Jack had begun feeling better towards the end of last week and asking to go to school. Then throughout the night on Friday, Jack developed a fever resulting in him being admitted to Barnet General early on Saturday morning. We hoped that it would be diagnosed as ‘viral’ as a flu bug has been sweeping through Barnet, but he was admitted to Treasure Island ward.

Our bitter disappointment was evident as we tried to explain it was Jack’s last weekend of freedom – once the second course of MIBG therapy hit him, his counts would worsen and it was probable he wouldn’t be out of hospital much before Christmas again. He had missed the school fireworks because he’d been in-patient at UCH and we had arranged with friends to have our own fireworks party at home that night. The hospital staff were fantastic. They worked the antibiotics so that Jack was allowed out for a few hours that evening. Jack watched the fireworks for a while but despite being wrapped up in a jumper and coat he began to feel the cold, the anti-sickness drugs were wearing off and tiredness set in. He finally gave in and watched the fun from inside the kitchen window before falling asleep.

On Monday afternoon after blood transfusions and more platelets, we were transferred back down to UCH. An awful cough had developed, it was very persistent and reminiscent of the cough he had last December when he had pneumonia. How he managed to lie still for the 2 hr MIBG scan the following morning, I have no idea. A second chest X-ray was taken following the scan, this showed something going on in his chest, no one knew what it was, it could be infection or it could be further disease. I spent the day in turmoil, apprehensive and scared that this hated disease had advanced into his lungs, this is one of the worst things that could happen. The hardest areas from which to clear the disease are the lungs and liver.

By Wednesday, common sense became the basis of renewed hope, the fever had gone and the cough had developed so suddenly; this had to be an infection, but still the unease persisted. On Wednesday the decision was made to proceed with the second dose of MIBG – even if this was new disease, we had nothing else, chemo wouldn’t clear the disease and our hope lay ultimately in the MIBG. So at 2pm the second infusion was conducted, 24 hours later than scheduled. Jack lay throughout the day listless with no energy looking frailer than we’ve ever seen him look before. He has had no appetite for days. He is rapidly losing weight and it showed in his skeletal frame, his eyes have lost their sparkle, his skin is an awful grey colour and black circles are prominent underneath.

However, his moment of happiness has not been deprived to him… that moment being when ‘the postman’ arrives. More than ever we now appreciate the cards that are still arriving. In an effort to keep that sought after smile, we have taken to ‘drip feeding’ him the cards. A few in the morning after breakfast, a few more at lunchtime and few more in the afternoon. It is the little things in life that give the most pleasure. Those cards mean much more to us than most could realise. They keep us – his parents – alive too. Finally it remains to say a huge thank you yet again, to the many who have sent cards and letters and magazines. To the many schools that have sent us bundles of pictures and books. Every single card has made a huge difference.

Update 6th November 2007

It was strange, odd on certain levels, re-entering University College Hospital. Two years ago to the very day we had placed ourselves in the same scene. Two years ago following 12 rounds of unsuccessful chemotherapy Jack surrendered to MIBG radioactive therapy. Then there was a sense of trepidation, now there is a sense of trepidation. But its cause is subtly different.

Jack coped well; he coloured and we looked at books; played Uno; watched TV and annoyed each other. The food was tolerated and Jack’s only symptom of processes within was the early onset of diarrhoea.

Jack got cards AND more cards and AND more cards – it was great fun reading out the messages and working out how best arrange their display. Thank you to everyone who sent them in – I wish there were words to describe how much they are appreciated. The broke the boredom, the monotony, and towards the end of the week when Jack became sickly and lethargic, wanting only to lie in bed, his one bright moment was the arrival of ‘the postman’. I hope it is suffice to say that each card he received will provide us with a very precious memory; we intend to keep every single one. Thank you.

Jack’s radiation count came down steadily and by Saturday afternoon he was considered to be ‘cool’ enough for contact with the outside world. Our escape was made more memorable by one of those lovely notes employees of Camden leave on the windscreen of your car.

Jack has suffered further sickness and his appetite is negligible. We hope he will find some energy before Monday’s return to hospital for more MIGB.

Update 24th October 2007

We took Jack to Great Ormond Street Hospital on Tuesday, the only suggestion forthcoming was radiation to the sites of the new tumours and maintenance low dose chemo. Jack has never responded well to Chemotherapy, and the likelihood is that we would use his final bag of stem cells, with little response, it therefore seemed sensible to enquire about further Mibg therapy – although it’s highly toxic, this worked two years ago, the back lash of the toxicity in future years was something we no longer have to think about.

Jack will be admitted on Monday 29th October. The radioactive Isotope will be injected on Tuesday 30th and he will remain in Isolation until at least Saturday. There will be a one week break before being repeated in two weeks time. Our hope is that we will be able to give Jack, Connor and Rhian one last wonderful Christmas together. We are under no illusions, every day is precious.

We are very grateful for your prayers, and would welcome any letters or cards you wish to send Jack during his weeks of isolation.

Update 21st October 2007

We are still considering the way ahead for Jack. We are most likely to undertake further mibg therapy at UCH london, commencing Monday 29th October. This is something we never imagined Jack would have to undergo again, involving further radioactive infusions and two weeks of isolation as Jack will become radioactive after each infusion.

A week has gone by since our return to the UK, and we are beginning to feel some of Jack’s fighting spirit ebb our way, although we are realistic enough to accept we are merely buying time with whatever course of action we take.

The simple fact is this, Jack has a particularly aggressive type of disease, one that never reacted to chemotherapy in any way. There is much work being conducted in many, many institutes across America and we have no doubt a cure is within reach. Whether it will be found in time for Jack is doubtful. Either way fundraising is essential, we will continue to fundraise to speed the way to finding the cure, and bring it to the UK.

Update 15th October 2007

We had a heavy day of scans on Friday, and have been devastated by the result of the Mibg Scans. Jack has relapsed in multiple spots, left leg, right leg, knees, thighs, pelvis, hip and right shoulder.

Friday was terribly difficult for him, we’d had little sleep the night before, and he’d been up at 6.30am to drink contrast fluids. Scan after long scan became more and more tedious, he is still frightened of the large machines, especially the noisy ones, and finishing off the final scans and the bone marrows, having seen the screen of the Mibg monitor was utter torture. I have brought him home. For now, he is in the one place he wants to be – in his home which he hasn’t seen for nearly 11 months, and with his family. The one question that arises now is what to do. His blood counts are low and will not tolerate High Dose chemotherapy, he’s used up most other options. Quality of life for Jack must now take precedence over everything else. He has fought ‘the good fight’, but this awful disease still prevails.

Update September 2007

Jack continues to under go extremely painful treatment. The antibody therapy attacks the molecules found on Neuroblastoma cells, sadly it is also found on nerves so it causes very intense pain.

Update 27th June 2007

Jack has finally received the first dose of 8H9, the treatment we came to the US for 6 months ago! It’s been a long and hard road, but we’ve felt such a sense of relief that he has finally received this one thing that gives us much hope. He’s been having headaches non-stop since the injection 2 weeks ago, so further scans were conducted today, with one final one tomorrow. Hopefully they will show only something good and we can proceed with the second and final dose next week.

Jack is completely fed up with treatment, and now his siblings have broken up at school it’s even harder getting him to hospital in the mornings. We’re focusing on his 6th birthday this weekend- a milestone which at one point we never thought we’d reach – and the possibility of going home soon.

A huge thank you to the many of you that gave us much support during the early part of this year.

Update 20th March 2007

We have found out that despite chemotherapy Jack has relapsed in his bone and bone marrow and this is very bad news for us all. Despite the risks, we have decided to start stronger chemotherapy as it gives Jack the best chance.

Update 2nd March 2007

We want to say a huge thank you for the lovely cards, pictures, photo’s that have been sent to Jack. We are so sorry we don’t seem to find time to write thanks back, our life is one big rush at the moment. Jack seems to come back from hospital just at the same time Connor and Rhian need to be picked up from school… the parcels have just arrived at that point and there is a HUGE rush to the Ronald McDonald reception by our 3 children – from all directions.

We have received some beautiful packages over the past 6 weeks and we are humbled that you take the time and make the effort to do this… be in no doubt, if you saw and heard our children, you would know how very very worthwhile this is (I was a cynic about 2 years ago…) Anyway, we’ve now devised some thank you cards, and if I can get to the return addresses first… I’ll ensure the JBA THOMAS TANK cards are forthcoming.

THANK YOU ALL SO MUCH.

Update 19th February 2007

A huge thanks, once again, for the mail that has been arriving. Every day Jack goes down to check our mailbox (on return from hospital), picks out his own mail and leaves ours behind… he’s had a tough week again with more surgery, and despite pressure pads his head is beginning to swell again – somehow I get the impression surgery is not over! He received several packets of lovely little gifts, which he shares with his sister. A huge thank you, these little things make him so happy, and we appreciate the thoughts and the effort you take to prepare these so much. I wish I could tell how valuable they are… they keep Jack going!

Lots of love from all of us (Richard, Yvonne, Rhian, Connor and Jack).

Update 16th January 2007

Jack has had a relatively tough weekend. His fevers continued to reach 40 degrees. He still had pain despite pain relief, but worst of all was his coughing, a convulsing harsh cough that would rack his body and leave him gasping for breath in between coughs, until a nebulizer was put against his mouth giving him oxygen with medication combined, which helped to open his lungs and airways. Shortly later it would start again.

On Monday the fever subsided and the pain lessened and by Wednesday Jack was up and out of bed in search of Hot Wheels. His cough remained but the high temperatures had gone, although he remained steadfast in his refusals to eat. His radiotherapy continued relentlessly, day after day, despite his unwillingness to lie face down in the mould in which his swollen head still would not fit. And it would take much, much longer for the radiotherapy team to link the laser lines against the small dots tattooed over his head and along his body. And throughout, Jack’s crying and coughing would upset the exact and precise nature of the treatment.

On Thursday, Jack was discharged to the Ronald McDonald House, although still to continue 6 hourly antibiotics intravenously. Jack was ecstatic to be back at the RmcD House, his appetite returned as did his energy, it wasn’t long before he was running around the House (with a mask, as his cough remained). Rhian and Connor had finally started school, in the same street as Sloan Kettering.

Friday saw the last of the long radiotherapy sessions. From Monday, the smaller ‘booster’ sessions would begin, and would focus on his head only. There would still be alignment sessions to conduct, but these no longer had to be aligned with his spine. The swelling in Jack’s head has gone down considerably, although pockets of fluids have manifested around his scar and on the top of his head.

Update 13th January 2007

Tonight Jack had the hated injection of GMCSF in his leg… it’s very, very sore, not just from the pierce, but the thick liquid going in… so afterwards, we put our hand in the box from Post Pals and brought out this BIG LOLLIPOP OF SPONGEBOB… guess who was on TV at the same time? Well, that really did the trick, so thank you so much!!!

Here is a picture of a Princess Pop, Car Pop and Spongebob Pop sent to Jack, Rhian and Connor.

Update 3rd January 2007

The neurology doctors came round and after examining Jack, they decided to take a sample of the fluids from his head. These would be tested in the same manner as the blood cultures – to see if they grew any bacteria – to establish whether Jack’s head had become infected. This was extremely unpleasant; a needle was inserted into Jack’s forehead without any numbing, and a full syringe of fluids was drawn out.

The second significant thing was found as a result of the chest X-ray. It appeared Jack had some lung filtrations, on both lungs. This is usually associated with pneumonia.

Tomorrow he will have a further MRI of his head which should help give an early indication as to whether he has an infection in the surgery site. Further tests will be conducted on the suspected pneumonia. He has already been placed on new antibiotics to combat the pneumonia.

Update 30th December 2006

A huge thank you to everyone who made Jack’s Christmas very special with lots of cards and little parcels to open. THANK YOU SO MUCH… one happy boy is a big happy family!

Through Post Pals, a lovely lady called Susannah contacted me, she has been sending things to Jack and at Christmas, she and her friends sent some home made jewellery and Christmas ornaments to me. That was a fantastic gift, it had all been hand done, and it made me feel so SPECIAL!

Update 28th December 2006

After radiotherapy on Friday, we took the children out for some air. In the late afternoon we noticed the fluids in Jack’s head had built up even more; his forehead above his left eye bulged with fluids and felt like a huge blister to touch. He had been in the stroller all day, but had no energy. I wanted to take him back to hospital then and there, but common sense reminded us the consultants were not perturbed by the fluids and assured us the CT scan was normal. Over the weekend the swelling went down slightly. Things remained much the same for Jack, he would sporadically tell us he had a sore head, but so far we had not given him any pain relief. And he had been going to sleep much earlier. What really perturbed me was the fact he was no longer playing with his friends. After tea he would want to be cuddled in bed, or play quietly in the room. This was very unlike Jack but we knew Justin, who had just gone home, had also been knocked out by radiotherapy so once again we put his tiredness down to this. We had been warned a side effect of chemotherapy was diarrhoea and this was finally kicking in so, again, it was probably due to everything his body was going through.

Update 19th December 2006

On Saturday 16th Jack’s face was swollen and his right eye was completely shut. His matted hair revealed the 42 stitches shaped as a question mark stretching from the front centre of his skull to the left ear lobe. But having had morphine at midnight Jack declared himself ‘fine’. And he was; he ate, ate lots, walked a little and played; and talked and ate and in the late afternoon the doctors declared Jack well enough to come home.

So the surgery had gone well, Jack had responded well and now in advance of our expectations he was returning to the house. This was great news not just in the obvious sense but even in smaller ways, such as Rhian having to wait in corridors, she being too young to enter the ward and visit her brother.

Update 13th December 2006

At 6am on Sunday morning, Jack woke up crying out in pain from his head; he immediately started shaking, harder than before and for longer. We gave the other children breakfast before beginning to try and encourage him to get out of bed and get dressed. We had already decided to take him to the Urgent Care Unit at Sloane, but didn’t want to tell him immediately as we anticipated protests – especially now his brother and sister were here. However he was extremely placid about it, and accepted it without question. During the morning attack he had told me he was very scared of something, but refused to tell me what. No amount of coaxing could get him to part with whatever it was he had envisaged.

That evening Jack was admitted. The CT scan showed the tumour had increased in size and was now surrounded by fluids and possibly blood. If the tumour was bleeding this was not good news.

Update 5th December 2006

We received some results today… and I guess in this situation, they’ve got to be good.

The Mibg scan does not detect any Neuroblastoma cells throughout the rest of Jack’s body. This is somewhat reassuring, but the doctors did emphasize this doesn’t mean there aren’t some there, i.e. they’re just not big enough for the scan to detect yet (the reason we were having antibodies in the first instance).

Secondly, the spinal MRI scan shows Jack’s Spine is clear.

However the MRI scan of the brain indicates the tumour is in the centre of the brain and not the lining. The neurologist had told us to hope it was on the lining, as this was easier to deal with. However our consultant (expert in the disease, but not in the brain…) told us it was best case scenario to be in the middle of the brain, as if it were on the bone or the lining, this would only mean there were NB cells elsewhere, as it would have had to have been carried to these areas. This is definitely not one for me to figure out; I’m leaving things to God. But it appears our prayers were listened to.

So a plan of action has been formed.

Jack will have surgery sometime this week (a date has not been provided by the neurosurgeon yet). If successful, an Ommaya reservoir will be placed in his head (this is a conduit to put medicines into his brain directly).

Jack will then be put onto Ironatecan, a chemotherapy drug to be given intravenously each day.

He will then have cranio-spinal irradiation (CSI) (radiation, but given to his spine and his brain).

Next comes Intra-thecal (IT) radioabled antibody (3F8 or 8H9) – this will be one of the hot antibodies (with radioactive iodine) given through the reservoir in his head and fed directly into the brain. The intention is after removal of the tumour, the radioactive iodine attached to the antibodies will be sufficient to kill any NB cells inside his brain.

After this, he will resume the 3F8 antibodies with GMCSF which he has been having until now. Obviously we will be praying nearer the time (if he makes it that far), that he does not HAMA in meantime. But this is way down the line.

And finally he will start Temozolomide by mouth. This whole procedure will take minimum of two years starting from surgery.

I take great hope from the ‘2 year bit’. However, I have seen the doctors happier than I have today, but it’s not a pleasant situation, so we’ll give it our best shot. For the next 3 or 4 months Richard and I will stay with Jack, and bring the other kids over. After this time period, Jack may be allowed home for 2 weeks at a time.

That’s the plan, nothing formalised yet, but what the doctors have told us today.

At least we now have hope.

Update 4th December 2006

Jack is currently in America, post to the normal address will get to him, or if you’re in America yourself it can be sent to:

Jack B
rm 707 Ronald MacDonald House,
405 East 73rd Street,
New York,
10021

Update 30th November 2006

This week they have found a brain tumour. Jack’s severe head pains started on Sunday and he has had tests in the last couple of days. This news has sent us reeling in shock.

Update 12th October 2006

Jack has now completed round 4 of antibodies at MSKCC. The treatment is now condensed into 1 week and he has found it terribly painful. Apart from pain, the other hugely inhibiting factor is sleep. Probably due to the morphine, he sleeps until well into the evening which means he has not been able to play so much with his new American friends. Upon our return to the UK we both found it so much harder to deal with jet lag this time, I guess this is because the ‘time switches’ were so close. We’re not sure if we’re returning to MSKCC or not. One doctor has told us we should return December 4th, but another says we shouldn’t. A blood test should confirm this in the coming week.

THANKS POSTPALS.

Update 11th September 2006

Jack has just completed his 3rd cycle of antibody therapy, arriving back a 5.55am this morning, tired but excited at the prospect of seeing Connor and Rhian again. His hair is beginning to get long, but we can’t stand the thought of cutting it just yet. With elongated chemotherapy, he’s been without hair for so long, that it now seems odd to have it back. He received 4 or 5 cars from Susanna in US while he was in New York, (through Post Pals) and this made him so very happy! Thanks Susanna, and thanks Post Pals.

Update 3rd August 2006

We wanted to say a big thank you especially to Julie and Alan Barrett who have sent on a number of occasions, not just beautiful cards but gifts too. I’m embarrassed to say that their address is still by my computer waiting for me to get time to write a thank you. We are currently in New York where Jack is continuing treatment, and therefore I would be grateful if you could pass our huge thanks to them, and to anyone else who has posted a card or letter to Jack.

Thank you also to Post Pals.

Update 29th June 2006

Yesterday we received some disappointing news from the hospital in America. The blood sent for testing demonstrates Jack producing HAMA, (Human Anti Mouse Antibody). This occurs when a patient’s immune system fights the antibody, which the hospital has infused. A consequence of this is that Jack cannot go to New York on the 2nd July as his body would try and reject the next round of treatment. We are left having to repeat blood tests in another 2 weeks in order to determine whether we can then go, and has left us with some questions about what to do in the mean time treatment wise.

Update 26th June 2006

Jack began radiotherapy on the 12th at the Middlesex hospital. Jack has been able to attend mornings at school before the radiotherapy, this will continue until the 29th June. It has progressed without too many dramas; some pain and sickness but by and large Jack has managed the process quite well.

Yvonne and Jack, subject to the results of a blood test, return to New York on the 2nd July 2006, when the next round of antibody therapy should be completed.

Update 11th June 2006

We returned to the UK today, we are due to fly back out to America on the 2nd of July.

Update 1st June 2006

Jack is now in America thanks to people raising funds. He will remain there until July as he has to undergo radiation. His post sent to the above address will be taken out to him every 2 weeks but please don’t send any bulky items.

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Holly C

23 July 2011

Story written 2010

Holly was diagnosed with Neuroblastoma in February 2009, she has been through a lot of treatment and been fighting it. However today they were told that the current chemo (TVD) isn’t working and there are no more options left.

Holly is currently is in hospital but they are trying to get her home so she is with her family, and kept comfortable.

Holly is 12 and so understands what is happening, how ever please keep post upbeat and cheerful. She loves getting post and so lots would make her smile! Her sister is called Izzy and is 3 and her brother Harry is 1.

Update 19th March 2010

I’m very sad to say Holly passed away at 4.22am today holding her Mum’s hand.

Update 17th March 2010

As Holly cannot walk she came home in an ambulance. Blue lighted to avoid the traffic, it is a shame she is so poorly because she would have really enjoyed that. She was more concerned about being dropped by the two lovely ambulancemen carrying her up the stairs!

Once she was in her own bed her agitation eased and she seemed to sink into her pillows with relief. She is very weak and totally exhausted. Her nose seems to be permanently bleeding as are various other parts of her body. Her platelets are now non existant so her blood isn’t able to clot.

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Hannah E

23 July 2011

Hannah sadly passed away on the 20th January 2010.

Story written 2007

Hannah was diagnosed with stage IV Neuroblastoma in August 2003. Her eventual diagnosis followed months of ill health and although, at one stage, we were told her condition was behavioural and she was attention seeking, we knew that was not Hannah and continued to question until we were eventually told Hannah had a tumour on her kidney and the disease had spread to her bones and bone marrow.

Hannah endured months of chemotherapy, followed by surgery, radiotherapy and a stem cell transplant. She was always positive and used what little energy she had to keep smiling.

We were given the news that Hannah was clear of disease around Christmas 2004 and she remained that way for 2 years.

However, knee pain just before Christmas 2006 led to more tests and scans and news that Hannah had relapsed and disease was in both legs and lower ribs. Now we are back on the chemotherapy, a different combination and Hannah has had two rounds to control the disease once again.

Update January 2008

Hannah has moved on from Post Pals, thank you to everyone who sent Hannah post or emails.

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Declan K

23 July 2011

We are very sad to say that Declan passed away at 1.05am on the 15th December 2008.

07/05/2002-15/12/2008

Story written 2007

Declan was born on the 7th May 2002 one hour overdue! He was born healthy and we were not aware of any problems until the 15th August 2002 when I walked into his bedroom and he appeared to be very grey and “vacant”.

We were admitted to hospital over night as a precaution and from one in the morning until 9am Delcan had a grand mal seizure every hour. A loading dose of phenobarbitone was given and thankfully all seizures stopped. We were sent home and were back into the hospital a week later when it all began again.

An MRI scan was given where it was made clear that Dec had a severe brain disorder and would need 24/7 care. By then all that didn’t matter as we had bonded with our angel and we wouldn’t change it for the world. People dream of seeing Angels, we are lucky we have one in our lives.

Update 15th January 2009

I’d like to thank everyone at Post Pals for all their kind words and messages over the loss off our sweet baby boy.

Declan had deteriorated a lot over the last few months and had practically been living at the hospice and if he wasn’t in the hospice he was in hospital. On the 12th December he was taken by the Paramedics to our local Hospital where they discovered he had a double pneumonia in both of his lungs.

He was transferred to the Hospice the same afternoon when he started to deteriorate in the early hours of Monday the 15th, he was simply too tired to fight anymore. I had a lovely long cuddle with him in bed, then Brendon got into bed with him also and then he gave 3 of the tiniest breaths and went to sleep forever.

Update 15th December 2008

We are very sad to say that Declan passed away at 1.05am this morning.

Update 4th December 2008

So sorry for the long update on Declan but things have been really busy and hectic over the last few months. I want to say a big big thank you to all who have send cards and surprises to the boys. Kyle has really enjoyed the Horrid Henry books he received for his birthday yesterday and a surprise parcel arrived this evening which i think is for Christmas so I’ve hidden it!!

Declan has been having lots of problems with his health and now has a movement disorder which is very unpleasant and uncomfortable for him. He is also experiencing very frequent seizures.

So even though you may not hear from us very often we want you to know how very thankful we are!!

Update 7th August 2008

Golly it’s been such a long time since i did an update on my Little SUPERMAN! Firstly i want to say such a big “THANK YOU” to all those that have sent Declan cards and letters, it really means a lot to us and i read them all to him as soon as they arrive. I know you all wonder if he received them and even though i don’t reply your thoughts touch us, so please never think that goes unnoticed!

Declan’s condition over the last few months has been declining and we have seen more and more of the old Dec slip away, but he’s very much with us! It just means he needs a lot more help and care and his symptoms are being treated as they arise.

Thank you to Viks for the wonderful tickets for Thorpe Park i am sure they will be used before the summer is out and we will make sure the guys take a picture for you. Once again THANK YOU everyone!

Update 6th May 2008

My word what a hectic, worrying, stressful time we have had the last eleven days. Dec went into the Hospice eleven days ago for symptom control regarding his seizures. Whilst in there, he came down with a sickness and diarrhoea bug which caused him to vomit. This was so scary as Dec has not ever had a virus like this. Unfortunately, when he vomited, he aspirated and this went straight to his lungs causing Pneumonia. This is very bad at the worst of times, but as Dec is no longer for iv medications, it was a very scary time. The first lot of antibiotics they gave proved to be unsuccessful, so we went in blind with a second course which thankfully are doing their job!

Thank you for all the kind words, thoughts and cards, especially from Karen (sami) and to Julie Barrett for the wonderful and truly amazing bear that you sent Dec. I know it shouldn’t have been opened until the 7th but we couldn’t resist! It’s fantastic and as Dec can’t speak when he shouts the music is brilliant!

Take care everyone!

Update 5th April 2008

Declan keeps me well and truly busy. After late November when he was really poorly, things have been non stop. At first we thought it was the Phenobarbitone because Dec changed completely (new movements, less and less sleep etc) but we couldn’t complain as the strong and nasty seizures were kept under control.

Slowly but surely they are returning once again and it has been non stop action here with him having no sleep at times and requiring sedatives to settle etc but I’m not complaining as i have my little man and i will handle what ever comes my way.

Update 3rd January 2008

Sorry for the lack of updates over my little pickle, Declan has had a really hard and rough few weeks to say the least and as you know we have been kept very busy in our house! As you were aware Dec has taken a bit of a decline in his condition to say the least, seizures were so out of control and he was requiring emergency medication at least twice a day! A new medication was introduced but he was so allergic to the medication that his reaction was so severe it was withdrawn immediately.

Since then he has been placed on a new medication via a syringe driver which was given continuously over a 24 hour period. This seemed to take effect and over a week later he was off that and able to take this medication via his gastrostomy tube! All this excellent care was taken place in the hospice where he was resident for nearly three weeks.

He had been poorly over Christmas but touch wood after a few days back in the hospice he is now back at home!

Thank you all so much for the wonderful gifts he and Kyle received, sorry for not mentioning names personally but it was manic here over Christmas and i cannot locate all my details of thank you’s that i was intending to send out!

THANK YOU SO MUCH!!!

Update 29th November 2007

Declan has been in the hospice for the last few days and yesterday we went to see Dec’s consultant at the hospital.

My little man has taken a rather large decline in his condition and is getting very tired. He is unfortunately heading towards total palliative care and end of life care. He has basically reached the next stage but it is not there yet, thank God. He is requiring lots of extra help and our main aim is to keep little man comfortable and calm.

He is still sleeping the days away but has also some wakeful spells where lots of kisses and cuddles are given.

Update 16th October 2007

What a busy month we had in September! Declan (a.k.a Pylon Pants) has been a real tinker after a relatively good summer. We have been in and out of the hospital, in and out of the hospice, on oxygen then off oxygen etc! He started with the new med (Euthsozimide) being introduced and had an allergic reaction to that (apid breathing and even worse seizures than before). He had a bout of status (constant seizure) was given first dose of Paraldehyde (drug) and reacted badly to that so was rushed to hospital, caught pneumonia and then got croup!! Had a few days of calmness and serenity, but now winter is nearly here and the surprises are never ending!!

Thank you for all the parcels that Declan and Kyle have received!

Update 27th June 2007

We went to the hospice in the early hours of this morning as Declan just couldn’t do it on his own and was struggling a little. They have put him on two strong different antibiotics and oxygen and things are now stable. So, hopefully, in the next 24 hours he should turn around, but because he can’t have IV’s anymore it’s always a frightening time.

Update 26th June 2007

Just to let you know that Declan has been really struggling with his breathing today and was diagnosed earlier with a very bad chest infection/pneaumonia. As Declan is to be treated only with oral anitbiotics, I ask you all to send lots of good wishes Declan’s way and pray these antibiotics work. If not, we can transfer Dec to our local Hospice where they will try to keep things under control.

Thank you so much for all the good wishes and cards Dec and Kyle have already received.

Update 24th June 2007

Big thanks to Kate, Julie, Luke Jones and Cathy and Bobby Etherton for all the lovely gifts, post cards and letters that Declan and Kyle have received in the last few weeks.

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Daniel M

23 July 2011

We are very sad to say that on the 14th of June 2008 Daniel passed away in his mothers arms, after nearly 3 years of battling Neuroblastoma.

Story written 2007

Daniel was diagnosed in October 2004 just after his 2nd birthday. We spent a total of 5 weeks at Birmingham Children’s Hospital, and then we got to go home and face family and friends who found it awkward to talk to us.We then got our treatment plan and it was a very intense year – 7 courses of chemo 10 days apart. Daniel seemed to handle what ever the nurses threw at him, kids are amazing! Next he had the surgery to remove his tumour which had connected to his right kidney. It was February already and it turned out to be the longest day of my life, 12 hours of surgery.

Daniel was very weak and stayed in hospital for 9 days. We then had 2 weeks at home to relax and find some normality. March came too fast and we had 15 days of radiotherapy at Queen Elizabeth Hospital. My heart was with him and it was so hard for me to watch him go through all this with no choice, you want what’s best for your child. Daniel then endured 6 months of Accutane which made his mouth and face extremely sore and before we knew it, it was November and the end of his treatment.

Sadly in November 2007, we found out Daniel had relapsed and he has had to start chemo again.

Update 23rd July 2008

Thank you Post Pals and to those who have and to those who still are sending cards. The 14th of June was a very sad day.

Update July 2008

We are very sad to say that on the 14th of June 2008 Daniel passed away in his mothers arms, after nearly 3 years of battling Neuroblastoma.

Update 30th January 2008

Daniel has just finished his second round of chemo and has nearly lost all of his hair. He has gone back to the small thin boy I knew 3 years ago. He is eating again now and trying so hard to avoid the nasal gastric tube.

I would like to say a very big thank you to everyone that sent Daniel cards, letters and presents. He has watched out for the postman every morning since I put his name down for Post Pals.

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Chintzia M

23 July 2011

Story written 2010

Chintzia was diagnosed with stage 4 Neuroblastoma on the 16th January 2010.

Chintzia had been unwell for several weeks, her tummy was very swollen and hard and she wasn’t her usual cheerful self. After a few visits to the GP who said it was this, that and the other, and still no change in her conditions, her family took her to A&E where she had an x-ray and it showed a big lump in her tummy. Chintzia then had an ultra sound and our lives were turned upside down and inside out with the news she had cancer.

After many weeks of tests and scans it was confirmed she had stage 4 Neuroblastoma.

Chintzia is now being treated at the children’s hospital based at the Oxford John Radcliffe Hospital, and has just finished 8 rounds of intense chemo.

Chintzia will then have surgery to remove the tumour and will then undergo radiotherapy everyday for one month, after that she will have high dose chemo, stem cell harvest, retinoic acid and antibody treatment.

Chintzia is doing really well at present and coping well with the treatment. She has had a few hiccups along the way, but remains cheerful.

The next six months or so will be very hard and draining, involving Chintzia being in isolation for 5/6 weeks and she will need all the smiles and well wishes to help her get through this difficult time.

Update 23rd June 2010

We are very sad to say that Chintzia passed away in hospital today.

Update 18th June 2010

Chintzia is very poorly at present. She has a new tumour in her neck and more tumours in her tummy, which was a total shock. She was doing so well after her surgery in May. She is in hospital at present and on chemo.

Update 31st May 2010

Chintzia has finished her rapid chemotherapy and has had all her tests and scans to see how much the tumour has shrunk and to prepare her for surgery.

Chintzia had her tumour removed on the 6th May, she was in theatre 5.5 hours and the operation was a complete success. Chintzia made an amazing recovery and came home to loads of smiles and gifts from Post Pals which was amazing and put a very big smile on her face and cheered her up no end.

Chintzia’s bmig scan showed that all but one of the hot spots has cleared up which was fantastic news.

Chintzia is now booked in for her stem cell harvest on the 15th June, and will start her gcsf injections from the 9th ready for this, which gives her time at home to celebrate her 3rd birthday. Chintzia will then be in hospital 4/5 weeks from the 12th July for her high does chemotherapy.

Post Pals is a fantastic site and it’s great to know that so many people care about the kids – children and adults alike. We have been overwhelmed with the kindness and smiles from people all over the world have shown us. It is an amazing boost for these brilliant children who go through so much.

Update 25th May 2010

Chintzia would like to say a big thank you for all the post smiles and gifts that she has already received and is still getting. It really does bring a lump to your throat that so many people across the world take the time to write and send emails. It’s really nice to know that so many people are hearing about this wonderful site and what it does for our kids. A very big thank you once again.

Update 12th May 2010

A big thank you for all the smiles and gifts Chintzia has received in the last few weeks. We have been in hospital having surgery (which was a complete success), so it was great to come home to it all. Chintzia had a fantastic time opening everything. Thanks again, it really does put big smiles on these very brave children’s faces.

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Ben H

23 July 2011

Story written 2010

Ben was diagnosed with a very rare and aggressive brain tumour when he was 20 months old. He had a 14 hour surgery which removed most of the large tumour (grapefruit sized) and left a plum sized one which was too close to his brain stem. After 6 months of intense chemo there remained none left! But his 3 month MRI showed it had returned. Again, he had it removed, followed by radiotherapy for 6 weeks to the whole of his brain and spine.

Ben remained tumour free for 10 months but then he relapsed again. Once again, he had major brain surgery; they were unable to do a complete total resection although this left him paralysed down his left side, followed by chemo for 6 months. This left no signs of tumour, but once again, 3 months after his routine MRI, it was back (January 2010).

We were told we could only prolong Ben’s life but I had contacted a doctor in Texas who specialises in Ben’s tumour. Ben’s oncologist agreed to contact him and he has been having chemo since February 2010. After 2 cycles the MRI shows reduction and his recent one shows no change (could be better or worse). Ben continues to have chemo for 5 days every 3/4 weeks until at least September 2010 when he will have another MRI.

Ben’s left side is weak, he has no left peripheral vision, and when outside he holds a hand for safety. He is on steroids for the rest of his life- due to damage from the radiotherapy and has a growth hormone problem.

However, Ben continues to be HAPPY and NEVER COMPLAINS. He is an inspiration to us all. We hope and pray there is a cure for him (Ben has been given a 5% chance of the chemo working).

Update 6th October 2010

Just to let you know that our beautiful Ben passed away on Monday evening, the 4th October. We would like to thank everyone who has so kindly sent him mail.

Update 1st October 2010

Ben has taken a turn for the worse. He has two new tumours. He has had an operation as he had fluid on his brain. The operation went well and they put in a shunt. Ben has been very critical since the operation – he has been in Frenchay, then moved to Bristol’s Children’s Hospital and then to the RUH. He has been heavily sedated and was fitting for a few days. Nic and Neil have taken him home (yesterday) where Ben is more settled and relaxed with Clic nurses on call. He is a fighter and Nic and Neil appreciate everyone’s support. Thank you xx

Update 1st September 2010

Ben’s MRI is on the 8th September, so please continue to pray and send lots of positive thoughts that it will be improved and the tumour has shrunk. Ben has been really poorly this past week. He has just started to get better. He now eats a piece of toast everyday! He is also slowly getting stronger each day and can sit up a little longer every day. It has been confirmed today, that he has had a bug! We are relieved that it wasn’t the chemo making him as bad as he was.

This is Ben’s first month of receiving post and we truly appreciate everyone’s gifts, cards, letters, postcards, pictures and emails. They really help brighten up Ben’s days and we really appreciate it. So THANK YOU ALL for taking the time and effort to send these – words can not express our gratitude. Thanks also to everyone who is involved for all your hard work.

Ben had a postcard and card from abroad which was lovely. He loved the picture postcard with the rides on and the train (also the pictures of the animals) as Ben loves these things and had lots to talk about in these cards, so thank you Jane and Bethan. Ben was mesmerised by the picture and rhyme of Banbury Cross – thank you Kath. He also liked hearing from Penny, with the beautiful flower on and hearing about Toy Story 3. A big thank you to Stacey and Louis for the lovely picture you drew, it’s very good!! Ben also really liked the card with Postman Pat and Jess on, he loves it. Ben has had some lovely and very thoughtful letters, we were very deeply touched by the words some of you have written, thank you ever so much, this really helps us “all” especially the letters from; Amalia Nigl and Joe McGee. Also, thank you for the letters from Murphy the Gnome and the rainbow paper from Jill. A very big thank you to everyone who has sent Ben gifts, it’s very generous of you all. He took Postman Pat and the monkey (on different days) into hospital to show them off!! Ben enjoys doing Magic painting and the Toy Story toys are fantastic!! He needed a pencil case and it being Thomas made it extra special. So thank you to: Victoria Grant & Bob (also for the lovely letter), Vicky Sheperd (and for the card), Margaret Schofield (thanks for the lovely words), Penny Berrill, Miss T Davies.

Update 20th August 2010

Ben started his 8th round of chemo yesterday after a week delay due to his platelets being too low. He will have a MRI scan in 2-3 weeks; this is an extra stressful and worrying time for us. We’re always looking for signs that it has come back, or in our case, if it now has grown!! But we have learnt over the years that there are no early signs!!

Ben has started receiving gifts and post this past week and he enjoys opening them all, so thank you all. We will put some photos on here asap!

Update 14th August 2010

Ben had a seizure on Wednesday and has not been himself since. He is very tired and more irritable. We’re thinking about asking for an early MRI (before his next lot of chemo).

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Ashley H

23 July 2011

Story written 2008

Ashley was diagnosed with stage 4 Neuroblastoma on the 9th June 2008.

Ashley had been unwell for a month or so, vomiting with stomach pains, weight loss and tiredness. Ashley visited the GP several times and the out of hour’s doctors, each time being told it was a viral infection. The stomach pain and sickness were replaced with leg pains and being unable to walk. Ashley was finally admitted to the hospital after 16 days of leg pains. Five days later a CT and ultrasound scan confirmed a lump 12cm by 8cm above his left kidney.

Ashley is being treated for stage 4 Neuroblastoma at Oxford John Radcliffe Hospital.

Ashley has just undergone 7 rounds of intense chemo that are every 10 days and he will then have a bone marrow harvest, an operation to remove the tumour, high dose chemo, radiation and light chemo as maintenance.

Ashley is well at present and carries on smiling as always. The next few months will be hard and draining, involving Ashley being in isolation for several weeks at a time, and any kind words are much appreciated.

Update August 2014

Amber is now moving on from Post Pals. Thank you for all the support you gave to Amber, but especially Ashley. I will always hugely appreciate everything you have done.

With many, many thanks, Clair.

Update 8th September 2010

Yesterday we transferred to the hospice. Ashley had internal bleeding and increasing pain. At 2:10 am, he gained his angel wings. His mum and dad were with him and he is now at peace.

Update 6th September 2010

It has been a very long week. Ashley completed chemo but the pain has got worse. He has pain in his ribs from the compression of the tumor. He is on morphine, methadone and gabapentin, but is still having painful episodes and when he is not he is very sleepy. We are still trying for radiotherapy but the doctors are not keen and think it would be best to just control his pain. I hope we can get him comfortable and home soon.

Update 20th August 2010

I have thought many times on how I am going to write this but there is no easy way.

Ashley’s scan showed the treatment in Germany has not been as effective as we had hoped and there is no more they can do for him here. We will be returning home on Wednesday evening. Ashley is well in himself. We have been in contact with several professionals in the UK to see if there are any other options. Thank you everyone for your support.

Update 5th May 2010

The past 2 months have been very difficult and things have very much been a roller coaster.

Ashley was very poorly with bone pain to his legs, so Ashley was started on a stronger mix of chemo and this seemed to work for a while relieving the pain. However, by week 6 it had come back and devastatingly his scans also showed Ashley has a new mass back to his original primary site in his stomach and the disease was spreading despite the stronger chemo. We had some very long and difficult chats with Ashley’s consultant but have pushed for more treatment. Ashley had radiotherapy to his left leg to try and relieve some of the pain, which it did, and he started yet another mix of chemo. Unfortunately Ashley was taken ill over the weekend with a serious line infection and blocked bowel. He is in hospital at present and things are improving slowly. Fingers crossed the infection responds to the antibiotics and he doesn’t need a line replacement.

After the Russell Howard show, Ashley has had a huge increase in mail and some very nice gifts, Lego sets, hero figures and magazine, books, activity packs. Amber also received some lovely gifts and cards for her 3rd birthday. Thank you so much to everyone that has taken time out of there lives to send Ashley post. It always puts a smile on his face.

Update 20th February 2010

Ashley woke up a lot happier this morning and is playing with his new Lego city set he got for being so brave yesterday in radiotherapy. His right arm still isn’t quite right but I’m hoping they will start physio on Monday to encourage movement. Hopefully it will be a boring and uneventful weekend in hospital.

Update 19th February 2010

Well, what can i say, other than that was absolutely traumatic. Ashley woke up in a bad mood, had CT scan and a mask made for radiotherapy and then high dose radiotherapy which he screamed all the way through which was just horrific.

Update 18th February 2010

Well, in true Ashley style, things have changed again. Our poor consultant – just as she arranges one treatment, something happens and she needs to change it. Last night Ashley developed weakness and loss of sensation in his right arm, Ashley was started on dexamethosone straight away and had hourly neuro obs through the night. Through the day there has been a great improvement and Ashley is using his arm normally again.

Update 16th February 2010

As Ashley has perked up so much, is no longer in pain, and his temperature has settled, they are now suspecting the infection emphasized the pain, so have changed the plan and don’t feel radiation is needed yet. They are going to start him on a different mix of medium dose chemo in the next couple days.

Update 15th February 2010

Ashley is better in himself today and back to being a little monkey. We are continuing with antibiotics for the next 3 days. We have been told today that they think Ashley’s disease is spreading at a rapid rate due to him being in pain. We are devastated. The plan now is for Ashley to have radiation to his whole head and shoulders as soon as possible. Then, if he is well enough, 2 rounds of cyclophosphamide and topetecan to see if it has any effect.

Update 13th February 2010

Ashley has been admitted. He has been started on antibiotics as infection marker is up. He is on Oramoph for pain and has had to have a platelet transfusion as they dropped to 12. The trial will no longer be an option.

Update 25th January 2010

Ashley had a wonderful birthday; it was such a busy day. Ashley opened all his presents in the morning and then we had a lovely family lunch at TGI Fridays, followed by going to the cinema with his mummy, daddy, and little sister Amber, to see Alvin and the chipmunks 2, then a quick stop home to change into his Jedi costume for his party. All Ashley’s school and special oncology friends came and lots of family. He had a magician and DJ. It was truly a great day.

Ashley completed his first round of chemo with minimal side effects and had his hickman line re-fitted on 5th January. Ashley remained well in himself and is even still managing to go to school for the afternoons.

Ashley completed his second round of chemo on 22nd January and again remained well through this course, though his blood counts have started to drop now due to the chemo and he will need blood and platelet transfusions this week.

Ashley will now undergo a week of testing from the 1st – 4th February to see what effect the chemo is having on the cancer.

Thank you to everyone that has sent Ashley and Amber cards, letters, and parcels over December and January. It’s so very kind and at the worst times it has really helped make the kids smile.

Update 29th December 2009

Ashley’s routine scans sadly showed a shadow on his head and neck and after further testing is it was confirmed Ashley has relapsed. This was a huge shock as Ashley is so well in himself and has no symptoms. However, the actual scan shows a 12mm liaison to the brain and the bone marrow biopsy showed positive involvement, meaning it had come back.

We were told this on the 22nd December, and as you can imagine it is not the best news at any time, but right on top of Christmas it has been very hard to keep the happy memento going.

Ashley started chemo straight away on the 26th December and he is having this via a cannula.

It is Ashley’s 7th birthday on the 30th December and we are having a special day going to the cinema, bowling, then a big party with a magician and disco.

Ashley will be having a Hickman line re-fitted on the 5th January.

Ashley is well in himself and really wouldn’t know if it wasn’t for the scan.

Thank you to all the posties, elves, and reindeers, that sent Ashley and Amber cards, letters and gifts over Christmas.

Update 29th November 2009

Ashley’s last test results came back clear and he proceeded with another month of cis retinoic acid.

Ashley is very well in himself and is enjoying school. We have had a really busy couple of months just doing things as a family and enjoying the good times and chipping away replacing the bad ones.

Ashley had his wish granted and we all got to go to Disneyworld in Florida. It was an amazing holiday and we did so much. Ashley got to go the Jedi training academy and fight Darth Vader and we also went to all the Disney parks, universal studios and sea world.

On 7th December we have a very hard week of tests and restaging. Ashley will have been in remission for 6 months and it will be an anxious week waiting for results, but we just have to go by Ashley and he is here and well now.

Thank you for Ashley and Ambers lovely yummy sweeties and lanterns they received this month. I would also like to thank everyone that has sent Ashley and Amber cards, letters and gifts over the past 18 months; it is forever greatly appreciated and really does put a smile on my kids’ faces.

Update 2nd November 2009

Ashley remains very well and is about to start his 6th round of cis retonic acid. He takes 3 tablets twice a day for 2 weeks then has 2 weeks break. The retonic acid still causes his skin to peel and blister around his mouth, but he doesn’t let it stop him or bother him. It clears quiet quickly when on a break.

Ashley has just had his monthly check up and is finally starting to put weight on which is great. We are awaiting test results for the vma urine (an indicator test).

We are going to Florida Disney in less than 2 weeks for Ashley’s Make a Wish. We are all very excited and hope to send some postcards to other Pals while there.

Ashley still loves receiving post and it really helps put a smile on his face when he’s having a down day. Thank you for both Ashley and Amber’s wish lanterns and Amber’s lovely pink dog. Also, thank you for the postcards and the bed bear card.

Update 2nd August 2009

Ashley is doing very well. He has now completed 2 courses of his retinoic acid. He is coping well with this, though with each cycle has suffered from cracked bleeding lips and peeling of the skin on his face hands and feet. This is meant to ease as the course goes on but he takes it all in his stride and carries on.

Ashley had a couple weeks at school, but due to there being lots of cases of chicken pox going around and Ashley’s immunity still low, it was decided it was best for him to be home schooled until the end of term. We hope he will be well enough in September to return fulltime. Ashley is really missing his school friends.

We had bit of a scare in July as Ashley developed a limp. Thankfully after a check up at the hospital, it was decided this was just a strain and it did solve itself in a few days. We were very worried and it is a reminder of how quickly things could change.

We have just enjoyed a family holiday to Bournemouth which was lovely as it was the first time we have been able to relax and just enjoy life for a long time. We went to the seaside and on lots of days out. We are enjoying the time at home as a family.

Ashley has is 3 month check up on 27th August, please wish us luck.

Update 26th May 2009

Just a quick update to let you know Ashley has now finished radiotherapy and we have had the re-staging test results back and Ashley is clear. There is no detectable evidence of disease and we are very pleased to say he is now classed as being in full remission.

In 2 weeks time Ashley will start a 6-9 month course of 13-cis-retinoic acid. This is meant to influence the way in which cells grow and develop, and prevent the production of specific genes that may cause cancer, so it is to aid in preventing relapse.

Ashley is now having home tutoring and will start back at school on the 2nd June doing a few afternoons a week and increasing to fulltime when ready.

It has been a very long and hard year and thank you again to all the Post Pals for sending well wishes to Ashley.

Update 8th May 2009

Ashley is doing very well, he is now 60 days plus post high dose chemotherapy and his blood count has stabilized and he is slowly putting weight back on.

Ashley has been enjoying time at home with his family and had a fun day out at Legoland for Amber’s 2nd birthday.

At present Ashley is day 4 of 14 radiotherapy sessions, he is coping well and just about managing to stay still.

Ashley has just had a week long of final testing to determine if he is free of cancer and we are anxiously awaiting the results.

If Ashley continues to do well he will be able to back to school in June. This would be the first time in a year and he is very excited about this.

Thank you to everyone that has sent post to Ashley and Amber, it really does brighten up their days.

We were very saddened by the passing of fellow Post Pal and Neuroblastoma fighter, Jack Brown. Jack shinned like a star and was loved by many. Our deepest sympathy and prayers to Yvonne, Richard and family.

Update 24th March 2009

Ashley is now home from hospital. The high chemo went well and somehow Ashley had 17 doses of chemo over 4 days and 3 days of stem cell transplant. He was unwell for several days with developing mucitis (sores of the mouth and digestive tract) and sickness, combined with not eating and a neutrophil count of 0.00. He was put on anti fungal and anti viral drugs, meds to help is digestive problems, tpn for nutritional support, and morphine for the pain. Amazingly, only a week later, he started to feel well again and was eating, so the drugs started to be weaned off, as did the tpn. It got to the point that Ashley was so well he had an accident (bumping his head) when playing with one of the doctors and it was decided it was time for Ashley to go home.

Ashley is well and back to his normal bouncy self. We are having twice weekly reviews and he still needs platelet transfusions often.

Thank you to everyone that sent cards and parcels to Ashley.

Update 28th February 2009

Ashley started high dose chemo on the 17th February. He had a total of 17 doses of chemotherapy over 5 days, followed by 3 days of stem cell transplants. Ashley is well in him self at the moment but a little quieter than usual. We have been advised that he is likely to become unwell in the next few days as his blood count is dropping and is appetite is greatly reduced. Unfortunately its a sitting and waiting game of how unwell he will get as there are a number of side effects that could happen, so the next couple weeks are going to be hard. We are hoping and praying these effects will be minimal and that Ashley bounces back quickly as he has always done in the past.

Thank you to Kim Bows for the book, Ashley has enjoyed reading it. Thank you to everyone who has sent cards and also for a lovely activity pack.

Ashley is in isolation so any cards, activities, etc, will be much appreciated and a welcome distraction.

Update 31st January 2009

Ashley’s operation went very well, they managed a complete removal of the tumour and Ashley bounced back within a few days. The scar area is still a little tender but doesn’t stop him from diving around being Indiana Jones. Ashley’s other test result came back positive, his bone marrow also remains clear and his kidney function is ok.

Ashley has been enjoying some family time at home and then he will start high dose chemotherapy on 11th February. Unfortunately, this may make him very poorly for a while, but it is essential to make sure the cancer is all gone. We are expecting a 4 – 8 week stay in hospital and this will be on Kamrans ward.

Update 3rd January 2009

Ashley was receiving chemotherapy right up to Christmas Eve, but managed to get home for an exciting family Christmas, with lots and lots of presents and close family.

Ashley also celebrated his 6th birthday on the 30th December which again was spent having a small party with close family.

January brings a very busy time for Ashley treatment wise. On the 5th – 9th January, he will be undergoing various testing to determine what stage the cancer is at and how it is responding to the treatment (hopefully going). On the 13th January Ashley will be admitted to hospital for a big operation to remove the main tumour in his stomach.

If anyone would like to send him a card etc while he is in hospital, please send it to:

Ashley H

Kamran’s ward

Children’s Hospital
Headley Way
Headington
Oxford
OX3 9DU

A special thank you to a lovely couple who gave Ashley a huge cuddly dog – he sits on Ashley’s bed and he snuggles up with it every night. A very special thanks to Santa’s reindeers and Santa’s helpers too – Ashley and Amber received some lovely gifts through the post over the holiday season which really brightened up their days.

Update 26th November 2008

Ashley is doing well but unfortunately the recent test results still have not come back clear enough to move onto surgery, so another 2 rounds of chemo are being given. The bone marrow results have now come back clear though, so Ashley is due to have a stem cell harvest on the 1st, 2nd, and 3rd December.

We are also going to Disney in Paris on the 7th December.

Thank you so much for Ashley’s post, we really appreciate all the letters and cards, it really puts a smile on Ashley’s face.

Update 16th September 2008

After a meeting with our oncologist we were informed that the 7 rounds of chemo were unfortunately not enough to clear the bone marrow of Neuroblastoma cells and we are unable to proceed with the harvest as planned. We now need to have 2 more rounds of intense chemo, 7 days each round, and then Ashley will undergo more tests to see if the bone marrow is clear for harvest.

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Anthony M

17 July 2011

We are very sad to say that Anthony passed away on the 8th of February 2009.

Story written 2008

Anthony was diagnosed with renal cell carcinoma in February 2006. He had keyhole surgery to remove the kidney containing the tumour. Chemotherapy and Radiotherapy are not affective with this type of cancer, which is rare in children. We had follow up at clinic every 6 weeks. Anthony suffered back ache for months following this. In May 2007 after an MRI, it was discovered that the cancer had reoccurred. It was localised in Anthony’s renal bed where the kidney had been and the muscle above which was within his back and was pressing on 3 ribs.

After applying for funds Anthony was approved for the new drug Sutent. Capsules are taken daily and Anthony can have various side effects from blisters on his feet (which can make walking difficult) mouth ulcers, sickness, constipation, loose bowels, indigestion, loss of hair colour, low appetite and rash on his hands.

Anthony is waiting on the surgical team at Sick Kids Edinburgh Hospital to agree to surgery. They are reluctant to do this as he could be left with nerve damage in his legs and no guarantee the cancer will not grow back. We await news following a MRI and CT in March.

Update from Anthony’s family, April 2011

I’d just like to say that it has been wonderful to be part of this super charity/cause. My Anthony loved getting his post, presents and so on. It was a real boost at times and all the boys, Chandler and Zack included, have enjoyed getting post. I feel with Anthony now an angel and the boys getting older, it is time to move on.

Thank you so much to everyone who took the time and effort to post.

We set up a charity in Anthony’s name and if you would like to visit it can be found here http://onlineborders.org.uk/community/ammf

Update 23rd February 2009

A huge thank you for all the cards we have received sending condolences to us. Also to the Thomas Ball charity for sending the bath bombs from lush (note from Viks – Anthony and his brothers love Lush bath bombs, so we had the idea of sending one of every bath bomb Lush make. We couldn’t afford it though so hunted around for some funding and the Thomas Ball charity kindly sent them and offered the family a holiday). The boys tried their first one last night, Zack with a bubble bar called ma ba which was chocolately, and Chandler with a green one which was very fruity smelling and turned the water green! I have noticed that the lush products are great for the skin. Also thanks to Fearne Cotton for her signed photos.

I want to say Post Pals is wonderful and we are blessed to have such support from you all.

Update 10th February 2009

“It is with a very heavy heart that i let you all know that Anthony lost his battle with renal cell carcinoma at 11am on Sunday 8th February 2009 aged 13 years. My wee angel, my star xxxxxxxxxx”

12/09/1995-08/02/2009

Update 25th January 2009

Anthony got a blood transfusion on Friday 16th January. He had been sleeping off and on all day the day before after not recovering well from a chest infection in December. We were concerned as he would be up for a half hour then wanted to go back to bed. We phoned sick kids and they wanted to see him.

On arrival he was sent for a CT scan and we were given a bed for him to rest in whilst waiting on results. He had bloods taken to be analyzed as normal. He slept off and on the whole afternoon.

Keith and i were asked to speak to one of the oncology consultants to discuss the CT scan. The results showed a spread in the right lung and on the surrounding rib. She told us that there was fluid build up and it would need to be drained. We discussed pain relief and a change of medication as everolimus is clearly not working. A new drug was ordered right away called etoposide. It is a cytotoxic drug and is taken twice daily in capsule form. He started it that night. This was another blow after the December 1st scans showed increased size in all tumours and he was on double dose of medication.

His bloods were delayed for some reason and were not started until 11pm. He was given 2 units over 4 hours. The machine bleeped off and on until 3.15am. Finally when the bloods stopped, Anthony was able to sleep. We got home Saturday (17th) morning. Sick kids will be in regular contact and a community nurse is to visit once or twice a week. We will get lots of support at home. We may be up to the hospital depending on how Anthony is.

Update 28th November 2008

Anthony has not had a brilliant few weeks. He has suffered off and on from back ache, sore thigh, a sore neck, extreme tiredness, and has been back and forth to the clinic to get checked out. He has not been hospitalized thankfully. I am thinking its teenage aches and pains but know that the back ache is from his tumour site.

This week he was sent home from school after being sick – i took him to the GP and it seems there is rattling on his chest and he is on antibiotics for this infection. He looked so white and was lethargic.

He had a lung function test and MRI and CT scans done recently and will get the results of these Monday 1st December. Hopefully his tumours will be stable.

Chandler and Zack are well and all the boys are looking forward to Christmas.

Update 11th November 2008

Anthony hasn’t had a great week with a sore thigh which made him limp for 3 days and he looked and felt so tired and had back pain on Saturday night. We arranged to go to clinic to have him checked over as he looked grey, but the clinic think the tiredness is from the flu jab, and his back pain is from the tumour site which has activity in it and feels warm. Apparently this is good as it means the medication is working. His leg, we’re not so sure about. His bloods are good but often are and in my opinion is not an indicator of how well he is. We pray its teenage aches and pains and pray his medication is working.

He would like to thank you for the balloons sent today, they arrived this morning and he is excited by them. So thank you so much for this lovely gift. What a surprise. We also want to thank you for the lovely blankets given to Anthony, Chandler and Zack, – they are fab!!

Update 2nd November 2008

We had a clinic appointment yesterday. It was to see how Anthony is coping on Everolimus. We spoke with one of the doctors who hasn’t seen Anthony for a while. He is a Reg and was with us at the start of this cancer journey. Anthony really has a great relationship with him and this doctor made Ant feel secure. Ant asked for him to take bloods last year when he first started Sutent, but the doctor had taken a leave from oncology at that time and we got to know our consultants new Reg. I feel it’s such an important part of the whole aspect of dealing with cancer to build up good rapport with the doctors. When this happens there is trust built not only with Ant but with us too as parents. I know through work that in Paediatrics, nurses and doctor are usually known on first name basis. I never see that in the adult nursing world.

Any way the appointment went really well. We described how Ant has been this month and I began to feel quite positive that he has generally been well. Ant has not felt his feet sore, had no blisters, he has been more energetic, not as stiff, less nausea, no indigestion, and not as much grey in his hair. In fact he has had a brilliant month. And it’s when you reel it all back that you think, gosh I am so pleased. Our consultant was smiling and happy with how things are. Ant was weighed, measured and had his BP taken. He has lost weight, but is 5ft now.

Next clinic appointment at sick kids will be after the MRI, CT scans and lung function tests. We hope and pray for good results, that the drug is holding the tumour, or stopped growth. Ant will continue to have bloods fortnightly unless they say otherwise. We are having these done at ambulatory care, BGH, as he is very relaxed now at getting them done. Next appointment there is this Thursday. His back ache is under control with regular Codine and he takes paracetomol if needed and his cough is improving.

Chandler is improving also and the three of them are looking forward to Halloween. You should see our front garden – Keith has it very well decorated!

Update 13th September 2008

Thank you all so very much for the many birthday wishes sent for my 13th birthday.

Thanks to Grace and Linus for the Dr Who find your destiny books and the Dr Who log book. Thanks to Jenny for the Dalek card. I also received cards from Kate Dee, Julie, Tracy, June Junko, St Matthews Sunday School and an email from Nicole. It is so kind of u all, thank you, from Anthony x

Update 30th August 2008

Anthony started his meds last Monday and has had a very sore back and been sick. He was off school just 2 times though. With the side affects beginning now, I hope it is a sign the medication is taking hold.

He is looking forward to his 13th birthday in a fortnight and wants to go with friends to the cinema.

Thanks to all those who regularly write to Anthony and Zack loves getting some of the colour pages, cars and stickers etc. If anyone would also be so kind to write to Chandler he would love it. Many thanks.

Update 27th August 2008

Yesterday we attended clinic and were given new medication for Anthony. It is called everolimus, a drug which acts on different signals within the tumour to sutent. The aim of this medication is to keep the tumour stable. It has just come out of stage 3 clinical trial and is found overall to extend life, on average, for 4 months. This is reported on the journal at time of trial compared to having no medication. It is used when sutent stops working or has become stagnant.

We were told it is time to try another medication as there are slight changes in the size of his tumours and they are questioning new lesions on lungs and lymph nodes under the arm and up along Anthony’s right side. We are trying to remember that they have been wrong before and are not concentrating too much on this news and are focusing on this new drug. Let’s hope it does what it should. The tablet is to be taken daily for 3 months and then we are to re-scan.

Anthony is excited about the new drug and thinks it’s wonderful to be the only child/possible person in Scotland to be getting this and they will be writing about him. He was very cheery yesterday and asked excellent questions about the affects on his lungs and whether to up his inhaler dosage, as the medication can affect the lungs as well as have similar side affects to the drug sutent. He is to have full blood count next week and be seen at clinic every 2 weeks to monitor his progress.

Speak soon and we are happy to hear from you all.

Update 9th June 2008

Anthony started his 8th round of sutent, taking 1 tablet daily for 4 weeks. He is on week 2 of this cycle. He has had a fairly settled month and felt more energetic. The side affects set in about now, sore mouth, grey hair returning, and feeling sick and lots of trips to loo at various times day and night.

He started 2nd Year today at high school. He loves being there and enjoys english, art, science and history.

Thank you for the cards sent to him and his brothers. Zack and Chandler feel really special when receiving post too!

Update 2nd May 2008

Anthony is on treatment at the moment. He takes capsules daily. He is often tired and sore. Back in October 07, Anthony lost the pigmentation in his hair and it turned grey, which for a 12 year old is immense. He asked recently if he could have his hair dyed and there was no objection from the hospital. His hairdresser showed us that his hair was unique and instead of individual strands of grey, the hairs were grey and brown in parts and from this could tell how many weeks off and on his medication he had been on. His hair is now a super brown colour which he loves and thinks makes him handsome.

We received a card for Anthony’s brother Chandler’s birthday, thank you. We have also received some lovely letters and although we will try and reply, it may take a while.

My boys get so excited when the post arrives, it’s wonderful reading the cards and letters they receive, thank you.

Update 15th April 2008

Anthony got good news – the lung biopsy showed no sign of cancer. He has started a new round of sutent on a lower dose. His consultant is looking into other medication for him. Anthony is better after needing more antibiotics last week. He went back to school yesterday, although he is a little tired and his back is sore.

Thank you for all the cards sent recently. Anthony loves reading them and it gives him a boost.

Update 31st March 2008

Anthony was admitted to the surgical ward at The Royal Hospital for Sick Children last week to have a biopsy of his lungs. Following the biopsy he returned to the ward with a chest drain and lots of pain relief. He then developed an infection, high temperature and started having haematuria. This was especially difficult for us as that’s the initial presentation of his cancer 2years ago. After ultra sound and chest x-rays, it was thought he had inflammation of the kidney. This is very serious with him only having the one kidney. We were so pleased that there was no sign of spread to the kidney. Thankfully everything has settled down and we returned home today. Two days had turned into a week and his brothers were only able to visit during the weekend. We were able to stay in a CLIC Sargent villa during his time up at the hospital. He is on oral antibiotics to clear up the chest infection and kidney inflammation but is pleased to be home with his family. We will receive news of his lung biopsy next week.

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Amelia-Grace C

17 July 2011

Story written 2010

Amelia was diagnosed with stage 4 Neuroblastoma in January 2009. She has always been a very active girl filling her week with drama, dancing and singing lessons, as well as Brownies and of course school! That’s why when she complained of pain in her legs I simply thought she had overdone things. Unfortunately the pain persisted and after a number of blood tests, scans and x-rays and a week in hospital, she was diagnosed with stage 4 Neuroblastoma. Understandably this came as an absolute shock for everyone, least of all Amelia, who is very intelligent and questioned everything that happened to her. The consultant told us there was a poor prognosis with only a 20-40% survival rate and a high relapse rate which would be terminal if it happened. She started on her first lot of chemotherapy a few days later and continued an intensive routine of chemotherapy every 7 days for 3 months. Amelia’s cancer had spread throughout her body form the main tumour which went from her adrenal gland on her kidney up to her lung, however after 3 months of chemotherapy her bone marrow appeared clear and the main tumour had halved in size. Feeling positive, she went into her 10 hour surgery to remove the main tumour.

Amelia was told that she would be in hospital for 2 weeks after her surgery but through sheer determination she got up and walked on day 1, had her epidural out on day 2, and was discharged home on day 3, which seemed to be a hospital record!! That just sums her up though. Next she had stem cell harvest and transplant with more high dose chemotherapy. This really knocked her and she suffered isolation for 6 weeks which was really tough on such a sociable child, but like anything she got through it and moved onto the radiotherapy. She said this was easy in comparison, even though it burnt her skin. She would skip up to the machine and jump on it with her summer dress and no hair – the staff used to love her coming in so smiley. After the radiotherapy we knew the 6 months of tablets would seem relatively easy and Amelia was quick to get back to school and Brownies.

In January this year Amelia started to develop pains in her stomach and legs again. She had been so amazing throughout her treatment that we couldn’t believe that it was cancer, so we put it down to tiredness etc for a few days. However, the pain persisted and the hospital confirmed that she had in fact relapsed.

Our worst fears were realised and in total shock we went through the limited options, none of which were curative. We decided that if the choice we faced was quality over quantity of life, we would choose quality for her. She is so active and full of fun that we wanted to ensure that she had the opportunity to have life experiences rather than being in hospital in the hope that she may get an extra couple of months. We immediately planned a trip to Euro Disney and various trips to theme parks etc which she has loved!

She is still fighting on and everyday whatever it may bring is amazing and filled with laughter and life.

Update 25th June 2010

After a brave and valiant fight Amelia-Grace became an angel last night peacefully with her mummy and daddy around her. The most amazing young girl that many will ever meet forever in our hearts.

Update 23rd June 2010

Amelia has been much more peaceful today, but sadly more poorly too. I have spent the morning sitting in her room with her sleeping which was lovely. She is sleeping most of the time now but looks like a little angel.

Update 17th June 2010

Amelia has had quite a lot of pain today. Unfortunately her pump came out but she was very good and let the nurses put another in without much of a fight. We are upping her painkillers a bit to try and get on top of it. Someone came to do healing, Amelia told her to do reiki… on daddy’s knees so he could take up running again… how sweet is that.

Update 15th June 2010

Well the angels (in conjunction with some very generous earthly beings!) have brought us the most amazing beach house to stay in at this difficult time. Every room overlooks the beach, sea, or the harbour, with Amelia’s room having the most wonderful view over the white sands of sandbanks, the purbecks, and over to the Isle of Wight. She has become very ill over the last week but in her times of lucidness is still her cheeky self.

Thank you for all your kind messages and continued support. I will take some pictures and upload them to show you her little peace of heaven on earth.

Update 14th June 2010

Amelia has had another day in bed. The doctors and nurses have been working out her medications and she has a new pump for the pain.

Thanks for all your wonderful messages.

Update 9th June 2010

Well the positive thoughts have obviously worked in many ways, as after 4 days of mainly sleep, Amelia woke up last night and had a laugh with us, watched some dvd’s and read her magazine. She has been much less sleepy today and just had a pump fitted for her sickness.

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