Story written 2008

Ashley was diagnosed with stage 4 Neuroblastoma on the 9^th 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 1^st, 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.

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 1^st 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.

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.

Amelia passed away on the 17h of March 2007. Thank you to everyone who wrote to her.

Original Story

On the 8th of February 2005 Amelia was diagnosed with cancer, on the 14th of February it was confirmed Amelia had Neuroblastoma stage 4. Treatment began straight away and Bristol Children’s Hospital became home for Amelia and her parents for the following months.

Amelia had numerous scans and tests, received chemotherapy, radiotherapy and an operation to remove a tumour from her Adrenal Gland. Amelia’s bone marrow was aspirated followed by more Intensive Chemotherapy and 5 weeks of isolation in the BMT unit (bone marrow transplant). Eventually Amelia returned home with her parents and brother Jacob. She still had to return to the hospital for check ups and did have to stay in hospital when she had high temperatures.

After further tests on the 1st of June 2006, the results came back; Amelia no longer had Neuroblastoma in her body. Even through the results were clear Amelia would still have regular checkups.

Unfortunately on the 4th of September 2006, a scan revealed the Neuroblastoma had retuned. Amelia has now got two tumours in her liver, and it is also in her hip, leg and scull. On the 21st of September Amelia was back in hospital having a Hickman line put in ready for Chemotherapy to begin on the 26th September.

Amelia is a determined little lady and hopefully she will fight this awful illness again.

Update March 2007

After a long and brave battle, Amelia finally lost the fight. On Saturday the 17^th of March at 8.15am Amelia closed her eyes and finally fell asleep. She was very comfortable and peaceful and now all the pain has gone.

She will always be in our hearts and be Mummy, Daddy and Jacob’s little princess and we thank her for giving us 4 years of her magical life.

We love you Amelia always and forever.

Update 14th March 2007

The past ten days has been very strange, and as usual Amelia has confused many people.

On the Sunday evening, for the first time in over 6 weeks, Amelia decided that she wanted to go out! So we had to carry her down the road to her Nannies house. The rest of the week she has been totally different from the week before; Amelia became quite chatty and a lot more alert. For the last 2 weeks Amelia has been asking for a happy meal every day, I am now starting to get recognised in McDonalds! Amelia has really kept us on our toes giving orders, asking for any food she fancies and getting us to endure hours of cbeebies or Willy Wonka; which we don’t mind as it keeps her happy.

Over the weekend there has been a dramatic change in Amelia and we have been able to see her health deteriorate daily. She began to go slightly down hill on Saturday and has continued to do so as each day passes.

The last few weeks she has become very weak but still has so much fight in her we have to take every day as it comes as we need to cherish every last second. Nobody can work out where all of her strength comes from but she is so strong in courage and will and that is what helps us to stay strong, although it is starting to get hard.

We would like to thank everyone who has sent post and parcels to Amelia & Jacob as it has put a smile on their faces and brightened their days. On Saturday we felt really proud as Amelia received a lovely award called the “little star” award from Cancer Research. She is unable to open the post herself but manages to ask if any has arrived when she sees her Nan.

Thank you also to everyone that has taken time to sign Amelia’s guestbook and leave messages. Your words of support and comfort are greatly appreciated and it means so much to know there are so many caring people thinking of us during this difficult time.

Update 4th March 2007

Over the last few months Amelia’s health has been slowly getting worse. We were told that there would be nothing more that anybody could do as the neuroblastoma and the treatment was too strong for her little body to cope with.

This has been such a hard thing to cope with for everyone as she has touched so many lives and her positivity has been such an inspiration to everyone who knows her.

Jacob is now aware of the situation although I’m not sure how much actually sank in. He has been such a brave little man and he gained his 100 metre badge in swimming on Wednesday which I think is absolutely brilliant for someone who is only 7 and going through the things that he has.

Over the last couple of weeks Amelia has been put on 24hour constant pain relief and has now become quite weak, but her spark still shines through!

We all love her with every bit of our hearts.

Thank you all for the gifts and cards that Amelia & Jacob have received they mean so much to both of them and we really appreciate it. The first thing Amelia says to her Nanny Peasedown when she visits is “Have you got me any post?” When she gets her post it really does cheer her up. This week Amelia received a glove puppet that had been made for her, she loved it and chuckled when her Nanny put it on her hand and talked in a silly voice.

Update 25th January 2007

We would like to thank all the kind people who sent cards and presents to Amelia for her 4th Birthday. They were all greatly appreciated and she loved them all. A special thank you to Project Linus for the beautiful quilt they sent, Amelia loves it.

Thank you also for the gifts sent to Jacob, it’s so thoughtful and generous of you all. Once again thank you all for your generosity and for brightening up Amelia’s day and putting a smile on her face.

Update 10th January 2007

We would like to thank everyone that sent cards & gifts to Amelia for Christmas. She loved opening all her post and we read every card to her.

It’s been a while since the last update but we have had quite a hectic time over the past few weeks.

Amelia eventually came home from hospital on 14^th November and she was having IV paracetamol every 6 hours for pain relief. Leah was taught how to administer it through her wiggly (central line) as Amelia will not take oral medication.

Amelia’s wish was to go to Euro Disney and stay in the Pink Disney Hotel. On 3^rd December her wish came true; this was thanks to family and friends holding fundraising events. We were overwhelmed by how much time and effort people put into making Amelia’s dream come true. It has meant so much to us and don’t think we will ever be able to thank them enough. We had a fantastic time and the most magical moment was Amelia’s amazement when Minnie Mouse came to our room and spent at least 20 minutes playing with her and Jacob.

A couple of days after our return from Euro Disney Amelia started complaining about pains in her leg. She was given Diclofenic Suppositories or whoops-a-daisy medicine as Amelia calls it combined with the IV paracetamol. This worked for about a week and then the pain returned so we took her to the hospital. They gave her Fentonyl Patches but as these take 3 days to start working she was given Morphine to help control the pain.

We had a fantastic Christmas and both Jacob and Amelia were spoilt rotten. Amelia was in good spirits and loved opening all her presents. News Years Eve we went to Leah’s sisters and New Years Day was spent at Leah’s mums for lunch and my mums for tea.

We are now preparing for Amelia’s Birthday on 16^th January when she will be 4 years old. We hope to make it as special as possible, each birthday is special and we feel blessed each time another birthday comes around. On 8^th February it will be 2 years since Amelia was first diagnosed which means she has spent almost half her life fighting Neuroblastoma.

Thank you again for all your cards and gifts, we would like to wish you all a Happy New Year.

Update 6th November 2006

Amelia finished her TVD (3 types of Chemo) on Sunday 29th October and all seemed well. She started her GCSF treatment on Tuesday 31st October and she still seemed fine. When Amelia went for her GCSF on Wednesday they also did a blood test. The results weren’t good and we were told she needed a blood and platelet transfusion. Unfortunately after the transfusions she spiked a temperature of 38c which meant a 48 hour stay in hospital. The temperature went down quickly but her CRP levels went up which indicated she had an infection. By Friday she was really ill so was given a chest x-ray. The doctor told us this was clear. Amelia continued to worsen during the day and we expressed our concern to the Clic Nurse. She contacted the Oncologist who was with us within the hour. She then looked at the x-ray and we were then told Amelia had Pneumonia.

Amelia has now been in hospital for five days, she is having three types of antibiotics but is still very low and does not want to eat or drink. It has been really hard seeing her so ill but we’re having to be strong and positive for Amelia.

Update 1st November 2006

Amelia has now lost all her hair as a result of her last lot of chemotherapy. We weren’t expecting it to happen so soon but it doesn’t seem to have affected her as she has just carried on in her usual bright and cheerful way.

On 23rd October Amelia started her TVD treatment. We had to take her to the hospital daily for the Topetecan and then on Friday she was admitted for a 48 hour joint infusion of Vincristine & Doxorubicin. As usual, Amelia took all this in her stride and with a smile on her face. Chemo Duck went into hospital with her, she was so happy when she received him from the kind people at Post Pals.

Thanks also to the caring people that have written to Amelia, it has really cheered her up and put a smile on her face.

Alex passed away on the 8th of June 2005. Thank you to everyone who sent her some post.

Original story

During the Spring of Summer 2002 Alexandra began to have what we referred to as “black outs” and was diagnosed with epilepsy. During the summer it became apparent that the medication was not working and an MRI scan was arranged on the 15th November 2002. We were given the results that day that Alexandra had a brain tumour and the results were couriered to Atkinson Morely Hospital in London.Alexandra went into hospital on the Tuesday and had her operations on the Wednesday, she remained in intensive care for 24 hours and went back into the ward on Thursday and she came home on the Monday. About a week later we were given the results of the biopsy which showed the tumour was a benign one called PXA and we were elated! Three months later a routine scan was shown to be “clear as a bell”!The next MRI scan was 9 months later and we were told that either the tumour had returned or there was scar tissue, but we would have to wait 12 weeks. That seemed an enormous amount of time but we got through it by being positive and hoping for the best.Unfortunately the scan in February showed that it was in fact the tumour that had grown back and another operation was arranged for a week later. This time Alexandra felt more ill and took longer to recover, she was distressed at having to go through this again. She came home after a week and we got the biopsy results a week later which showed that although the tumour was still benign it was more aggressive.The next three months went well but in May Alexandra had what we thought was a virus. A routine 3 month post-op scan showed that the tumour had returned. An operation was immediately arranged for the next week. This time the news was not so good, the tumour had changed and was now cancerous and the surgeon had not been able to remove it all for fear of causing Alex paralysis. After much discussion and heartache it was decided that Alexandra would be operated on again the following week. This time however they would wake her up during surgery and talk to her and get her to move her arm and leg whilst removing the tumour. The 3 ½ hours that Alexandra was in surgery felt like a lifetime. She is the youngest person in the country to go through this procedure, and she was extremely brave throughout.

Story written 2010

Sophie was diagnosed with Stage 4 High Risk Neuroblastoma when she was 15 months old. She went through the NB treatment (high dose chemo, stem cell transplant, surgery) and became NED (no evidence of disease).

Sadly, Sophie relapsed and at the time of writing this (24/02/2010) Sophie is expected to only have a small amount of days left.

We need to get lots of happy post to Sophie and her sister Jessica to make them smile.

Please send them first class and keep checking back for updates.

Update 12th March 2010

I’m very sad to say that Sophie’s battle with Neuroblastoma ended last night and she passed away peacefully in her Mum and Dads arms. Earlier in the day she had opened her eyes and said “Mammy”.

Thank you to everyone who sent post to Sophie and Jessica and created lots of precious smiles.

Update 10th March 2010

Sophie is still holding on. She has absolutely amazed me with her fighting spirit. Last night she woke and wanted to walk. She is so frail but her spirit inside is so strong and she walked! Through the night she was irritable and angry, I cannot begin to understand what is going on in her little body. I now wish and pray for her to be at peace and free from this disease.

Update 9th March 2010

Sophie continues to sleep. Her Morphine and Sedation pumps have been upped in a bid to make her more comfortable as she has been showing signs of distress.

Update 8th March 2010

Today is pretty much the same as yesterday, Sophie hasn’t woken, and her Morphine and sedative pumps are keeping her comfortable. Lord, how long must this pure torture go on? Today is such a beautiful sunny day, Sophie would enjoy the park today so much, yet she is asleep, frail, weak and stuck on the sofa with no ability to move.

Update 7th March 2010

Sophie hasn’t woken up for the second day in a row. Time is not on her side now.

Update 6th March 2010

Sophie is still battling on. She is very tired and weak and is now hooked up to morphine and sedative pumps to make her as comfortable as possible.

I am thinking of what Sophie as a two year old should be doing and think sometimes life is unfair.

Update 4th March 2010

Sophie was very poorly yesterday, we thought we were going to lose her, but she is still here fighting on.

Thank you so much for all your post and messages of support.

Update 1st March 2010

Not a good day for Sophie today. She’s been asleep a lot, irritable, uncomfortable and generally not at all happy. She didn’t even want a cuddle for most of the day, just wanted to be lying alone, not being touched. Her lumps are growing and her eyes are very bruised and swollen. Evil, ugly disease. It’s so devastating to have to observe. We’re just praying for a better day tomorrow, we would love an hour of happiness like we did yesterday. So sad to think we now class a “good day” as 1 or 2 hours of Sophie being happy and saying the odd word… something you’d think was such a bad day for children unaffected by such a horrible disease! It’s so unfair children have to go through things like this.

Update 28th February 2010

Sophie woke this morning very happy in her mammy’s arms. She has continued to amaze the doctors and nurses with her fighting spirit, even walking around today. She has watched Dora and, of course, Mickey Mouse. We know we are on borrowed time but we are enjoying it.

Update 27th February 2010 (10pm)

Another sleepy day for Sophie, but she is still amazing us with her strength, smiling and making us laugh when she is awake.

Update 26th February 2010

Sophie and Jessica have been inundated with post of gifts, cards and messages. It has been wonderful to see the few smiles Sophie has given today and Jess has been in her element opening all your lovely parcels. Thank you Post Pals, you do an amazing job, what a fantastic and rewarding organisation and THANKYOU so much to all you amazing people out there who have taken the time to make Sophie and Jessica’s last days together as special for them as it can be under the circumstances by sending all of these gifts.

Love Elaine (Sophie’s Aunt).

Story written 2006

Abbie was diagnosed with Neuroblastoma, an aggressive childhood cancer, in December 2002 at the age of 21 months. The initial signs were positive with the cancer being localised. Sadly Abbie relapsed 6 months later and endured 8 months of gruelling treatment of chemotherapy, high dose chemotherapy and radiotherapy. She was pronounced in remission in early 2004 and enjoyed a year of good health before sadly a relapse was diagnosed. Once again, Abbie endured a range of treatments and was once again pronounced clear of the disease in February 2006. Sadly the success was short lived and a routine scan 3 months later showed that the disease was back stronger than ever.

Abbie has an amazing spirit and is incredibly strong in her fight with this awful disease. By choice she would undergo morning out patient chemo before dashing back to school, anxious not to miss anything. Sadly the only option now is to try and keep the disease at bay with low dose oral chemotherapy but the benefits will only be short lived. The aggressiveness of the disease is such than she can appear better than she has been in months on one day and in the lowest of lowest lows with all the pain and discomfort this involves the next.

Family update 3rd April 2007

A big thank you for the balloons, cards and presents for Jamie’s birthday and those who continue to write.

Update September 2006

Post Pals released some balloons in memory of Abbie.

Update 11th September 2006

Our beautiful daughter Abbie died at 7.36 am this morning. After a fairly restless night she began to experience intense pain in her leg at 5.30am this morning. I managed to give her a dose of oral morphine and at around 6.00am I climbed into bed with her and was comforting her. At around 6.45am she began to fit and I was able to cuddle, comfort and reassure her. This was the first time in a while that I had been able to cuddle her as she had been in too much discomfort. Mike took over while I had a bath, then Jamie who was getting ready for school went to her room to say goodbye and she just died.

We are truly devastated that we have lost our child but pleased she is no longer suffering. It is a real comfort to know that only five weeks ago she was playing, running and swimming at a party and this time four weeks ago spent 2 hours disco dancing. Last Monday she made flower shaped biscuits, on Wednesday made a supermarket till out of boxes and collected Jamie from school and Thursday painted egg cups. On Saturday morning we took her for a walk in her buggy to the local shops and she insisted on renewing her library book.

We have arranged Abbie’s funeral for Friday.

Update 1st September 2006

Abbie has had a really rough fortnight. She was beginning to perk up and eat a bit more but then suddenly went very subdued, withdrawn and depressed. She has had an upset tummy and some very disturbed nights. We discovered yesterday that she has a very bad gum infection (which may or may not be caused by a tumour in her jaw) and is now on antibiotics. Today she is brighter and really enjoyed making a mirror which arrived from a wonderful Post Pal this morning.

Thanks to everyone for cheering up both Abbie & Jamie – they love opening their post. People’s generosity is amazing.