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

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

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”


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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Amelia P

17 July 2011

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 17th 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 14th 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 3rd 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 16th 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 8th 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.

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Alicia R

17 July 2011

Story written 2010

Alicia was born a healthy baby and we had no idea about the Cystic Fibrosis until we took her to Peru when she was 4 months old. She became sick immediately and spent 5 weeks in hospital there before we were flown home as a medical emergency. The next 5 months were spent in Great Ormond Street Hospital in P.I.C.U. At that time she had numerous operations including a hickman line (in and out!), Nissen’s fundoplication (which has since been redone twice) and a gastrostomy which was then taken out aged 3, but at age 6 she had another put in.

Once we got her home (a week before her first birthday) she did well until she was about 3 and a half when it was decided she needed to have IV’s every three months, so she had a portacath inserted. This kept her well for a while and they even extended it to be every 4 months.

Since January 2008 things have gone downhill. Alicia spent more than half the year in hospital with one admission to Great Ormond Street, then 2009 came and it was decided that Alicia should have permanent IV’s at home and be assessed for lung transplant. The hospital admissions became slightly more managed and less emergency, though we did have one blue light run to Great Ormond Street, plus suspected swine flu. At transplant assessment, it was decided that Alicia did not need it yet.

Now in 2010, Alicia’s hospital admissions are every 6-8 weeks if we can make it. Home IV’s, physio twice daily, a cocktail of medications, supplementary feeding, and overnight oxygen all continue as normal. While Alicia does go to school and manages to keep up most of the time, her timetable is shortened and she hasn’t done a full day since September 2009. Alicia is being statemented on medical grounds.

Alicia has got to the stage where she is fed up with it all. She doesn’t like going to hospital, doesn’t want to take her medicines (they are often found in the toilet!) and just wants to be normal. Because she had been so sick in 2008, she missed a dream holiday to Lapland but we are hoping to have a holiday to Portugal this summer – fingers crossed!

Family update January 2016

It’s nearly five years now since Alicia died, seems like yesterday and we miss her terribly.  Nico is now in the last year of primary school, which is hard as Alicia never got that far!  Can’t believe secondary school is looming and before we know it GCSE’s!! Nico remains sports crazy and we seem to live on one type of pitch or another. We got to go to one of the rugby World Cup games last year which was amazing, especially seeing the NZ Hakka live!
Thank you to everyone who continues to write to Nico, especially Bev, Kim, Marjolin, Toni, Connor & Karen. It still brightens his day when he gets home to his letters.

Family update January 2014

How can another year have gone by since Alicia left us? So much has happened that she has missed and we miss her more and more everyday. Nico continues to love his rugby, football, judo and swimming. He is a sportsman in the making, though once full contact in rugby comes into play I may stop him playing!! He is doing better at school and I think is coping better because Alicia’s friends are no longer around so he doesn’t get reminded so much. He loves receiving the lovely letters and cards that he is sent by the amazing people on Post Pals. It is a lifeline for him and keeps him smiling. So much support is lost when a sibling dies and to still have this is fantastic. I can’t thank you all more on his behalf.

Family update September 2012

Well I can’t believe it has been over a year since I have written one of these, and what a year it has been. A HUGE thank you to everyone that continues to write to Nico, it makes such a difference and keeps a little smile on his face. So many things ‘finish’ when your brother or sister dies, but to continue receiving post makes such a difficult time slightly easier for him. Nico loves his Dottie letters and also the Moshi stuff that he receives too.

A gigantic hole has been left in our lives since May 2011 and it will never be filled, but we try to continue onwards. We have had some lovely times and did manage to go away last summer with Nico which was lovely. This summer we have been watching lots of sport and even managed to get some tickets for the Paralympics which was a great day out.

Nico is going into year three and this should have been his first year at school without Alicia as she would have been starting High School this September. He struggled quite a lot at school last year and I hope that this year will be easier for him. He is very excited as he has Alicia’s old teacher this year so I hope that will help him too.

Update 17th May 2011

We are very sad to say that Alicia passed away today in hospital with her parents by her side. She was friends with Daisy N, and Daisy’s Mum Stephanie says;

“Alicia’s courage, determination, strength and will to live was such an inspiration to everyone who knew her – she embraced life and when she was not in hospital she lived life to the full going to brownies, school, holidays with her family, bouncing on the trampoline with her brother. I know Alicia’s family would want you to know how much comfort they all got from the support of Post Pals and how it made both Alicia and Nico smile.”

Update 5th May 2011

What a great April we’ve had! Only one outpatient appointment and the rest of the month at home or on holiday!!

The end of term went well for Alicia and she managed to take part in the class play at the end of term and attend the last week of school. She also passed her grade one in riding so felt very pleased with herself. Then it was the holidays and we had lovely weather and a restful time for the first week and then for the first time in about 4 years all four of us went on holiday together, on the same day!! Yes, we managed to get to Switzerland and had a fantastic 5 days there with our friends. The weather was fantastic and we managed to get around quite a lot of the countryside, plus a few days in Zurich. Alicia did struggle with the altitude at times but we had oxygen so that was fine.

We got through the holidays and Alicia went back to school full of beans last week. We have her transplant review on the 19th of this month.

I had hoped to just have a happy update, but unfortunately not. Alicia has to be admitted into hospital today for another lot of iv’s so here we go on the roller coaster again! Fingers crossed we don’t end up at GOS again, but we shall see.

Thank you to everyone who sent post to Alicia and Nico last month and made a lovely month at home even lovelier!! You all know who you are without writing all your names (plus the list is at home!!) and you’re all very special. Thanks for all the lovely Easter cards for both Alicia and Nico. There’s still so much chocolate in the house we’ll be eating it till Christmas!!! Thank you very much for all the lovely things we have been sent to make and do this month too.

Update 13th April 2011

Well March was a hard month as we spent most of it in hospital. Alicia couldn’t seem to shake of the chest infection or what ever it was that really knocked her down. The doctors were baffled and as usual with Alicia the tricks that normally work with other patients didn’t work with Alicia! Eventually we were discharged on the 25th March from Great Ormond Street having been in there 5 weeks and 1 week at our local before that. Alicia got to school for the last week of term so that she could see her friends again.

We’re now on holiday and hoping to get to Switzerland to visit friends next week for a few days. As usual everything is in place and we’ll wait and see if Alicia makes it with us!! So far it’s looking ok but who knows? Hopefully the holidays will help Alicia refresh herself and make it back to school next term!

We have to have a reassessment for lung transplant next month which is a shame as we normally have this annually but it has only been 7 months since the last one, so they obviously thinks something is not great.

Thank you to everyone who sent the children such wonderful post whilst we were in hospital, it made Alicia’s room very colourful and kept Nico from getting too sad. Thank you to Mandie, Vicki, Fiona, Jane, Claudia from Germany (Nico was really pleased and wanted to know if you lived near his cousin who lives in Bremen?!!). Thank you for Nico’s memories book, we are slowly getting through it! Nico looks forward to each letter from Dottie and loves hearing from him – one day we will write back.

Thank you to everyone who helps with Post Pals, it is truly amazing how a small card can make children smile.

Update 5th March 2011

Well, we have not had a good February. Alicia has been in hospital since the 14th and got transferred to GOS. We have been there for 2 weeks. At first they thought it was a line infection but everything has come back negative which is great news as she has only had that line for 6 months!! So it is just a really bad chest infection. For the first week she couldn’t get out of bed and was on 10 litres of oxygen 24 hours a day. We have now weaned that down to 3 litres 24 hours a day but obviously we need to get back down to zero oxygen, and that seems a long way off at the moment!! They are talking of starting steroids to see if that helps. We have also been started on Bi pap to help just before physio. This seems to be working so it looks like that will be another thing that I will have to add into the mix on a daily basis! Oh well, if it keeps her out of hospital. She is really fed up in herself and I can’t wait to get her at least to the local hospital so she can see friends again which would be great.

Hopefully March will be better, so fingers crossed.

Thank you for the lovely Valentines cards, they loved them and made Alicia’s admission to hospital the same day a bit brighter. Sarah thank you for you crafty bits, they have made hospital more fun! Jane, the teddy is lovely! Jenny, Nico loved the game and hasn’t stopped playing it! Kim, Alicia’s box was superb and she has had fun with all of it. Samantha, we haven’t got round to reading the book but she loves it. Sheely from Florida, the crazy bandz are great and have been swapped and worn. She loved the Hello Kitty bits from Soila in Finland too, so thank you everyone. Thank you also to St Mary’s School in Bishop Stortford for their letters and also Cheltenham County High school for their letters in December, sorry its late!! To Davorin Jenko Primary School in Slovenia for their FANTASTIC cards and letters that they sent a long lime ago, but the pictures are still all over her bedroom!!!

Thanks to Post Pals for making our present situation more bearable and brightening up our days and Alicia’s hospital room!!

Update 2nd February 2011

Well my last update was just before a GOS appointment and this one is just after a GOS appointment. We had a really good appointment today; her lung function has gone from 27% three weeks ago to 44% today! Her weight has gone up 1.1kg in three weeks and generally they were really pleased with her progress! So much so that she has been discharged tonight after three weeks on IV’s – hip hip hooray! There had been threats of another week, going on bi-pap and all sorts. Thankfully we have by passed that stage for the moment (our thoughts are with Jon Paul and his family, we had a couple of years when we were lucky to be out of hospital for 2 weeks and I hope he gets over the worst soon).

We have had an ok month despite Alicia being in hospital for most of it. Nico’s birthday was lots of fun and Alicia was allowed home for the weekend so we didn’t have to go back and forth to hospital. Alicia’s school statement has finally been approved so we can now get her the help she needs in class. We also had a weekend down at the hospice which was really relaxing and we all had a great time.

Alicia is looking forward to going back to school and seeing her friends again.

February should be a quiet month and hopefully hospital free. We are not due back to GOS until the beginning of March and then they want to admit her at the end of March – fingers crossed she lasts that long!

Thank you once again for all the post and smiles that my children have received this month, it really cheers them up and makes their days. I hope we have written all our Christmas thank you’s, but if not, I’m really sorry and will do my best to get them done as soon as possible. Thank you everyone for all of Nico’s birthday cards and birthday gifts. Thank you Jenny for the camera, Alicia’s had lots of fun taking photos!! Mandie, your letters and gifts were wonderful. She loved the Jacqueline Wilson book. Thank you to Charlotte and Vicki too for their gifts. Thank you to Kati and her family from Finland for the cards and stickers. Alicia loves getting post from Finland because it is where her cousins live. She would have written back but there was no return address, so thanks again and from Nico too for his stickers! Post Pals has been great putting smiles on my children’s faces in a normally depressing month! Thank you everyone.

Update 12th January 2011

First and foremost Happy New Year to everyone who reads this. Thank you to everyone who takes the time to make all the Pals smile, especially my two! We received some lovely cards, letters and gifts during December, words cannot thank everyone enough. To who ever wrote Nico’s reindeer letters, they were amazing and he is still talking about them, and who was the fastest and who could watch tv through his antlers etc etc. The icing on the cake was the Rudolf card and amazingly this came last (I say amazing only because of the problems we had here with the post in December!). Each letter was eagerly awaited and we all read them with laughter. Fantastic, thank you. I can’t remember the post mark on the stamps, but I hope you’re not being affected by the floods at the moment, if you are I hope and pray that everything will turn out ok in the end for you and the family. Alicia also received some fantastic birthday cards and presents so thank you.

We had a great December and for once everything went to plan! Birthday celebrations passed off (10 girls watching a movie and X Factor! Lots of fun with 2 sleeping over!). Then term ended, but we had a minor threat of hospital admission before Centre Parcs which also threatened Christmas, but that was put off as she improved. We had a lovely break at Centre Parcs with some friends and then a quiet Christmas at home which is the first time we have all been together for 4 years!

Term has started and she is very well, holding her own and happy to be back at school. We had three days in hospital last week for her to have her bone medicine and she sailed through that which was a relief as it can make her sick. The only downside is she has stopped eating so her weight is plummeting (2.5 kgs in three weeks) and this will probably mean an admission soon!

… A few hours later. We have just come back from a day admission at GOS for a kidney function test and review by the CF team and we’re now sitting in hospital at the beginning of a two week admission! Boo Hoo! Her lung function was down to 27% so they have said we have to come in to try and improve this. She had a rough day there and is now fed up, especially because she feels she will spoil Nico’s birthday (next week) by being in hospital for it. She always thinks of others before herself. Fingers crossed it will only be two weeks and everything will go smoothly.

Thank you everyone who continues to support our family and make us smile, you’re amazing. Thanks for all the lovely Christmas cards that we received for both of the children. Also for Alicia’s birthday cards. Words cannot thank everyone enough for all the lovely thoughtful gifts that both Nico and Alicia received this month. Sarah, the brooch is beautiful, Vicki, Adam W, Holly and the elf who sent the Ben 10 Lego, thank you so much. Thank you Amy for the dream catcher. Mandie, as ever words cannot say thank you, even the envelope gets admired by all! A letter is on the way! Everything has been made, used, listened to, and put to its use.

Update 1st December 2010

November has been a quiet month really. Alicia was in hospital from the 3rd to 19th and thankfully this was a run of the mill visit. We had a clinic appointment at GOS and they have decided that she needs to have a break from her home IV antibiotics. This is great as it means she can go swimming and have as many luxurious deep baths as she likes, but also very scary for me. Mainly because it is winter and December is a busy month for us, what with birthday and Christmas, and I do my utmost every year to keep her out of hospital for these two events (and have only failed once!). Added to that, this year we are going to Centre Parcs too… recipe for disaster. Well, she has stopped the antibiotics and so far so good. I am hoping to be proved wrong and that she will continue to do well. Please keep your fingers crossed.

Since coming out of hospital she has been back at school and loving it. This is the first year she has been out of hospital to enjoy the snow and is making the most of it.

December as usual holds parties, festivities and Christmas in store. Hopefully it will be a quiet and well one! She is singing in the Carol concert at school and looking forward to that, as well as getting in as much swimming as possible before they decide to put her back on her IV’s.

Let me take this opportunity to thank each and every one of you who send post not only to my children, but also all the children at Post Pals, and to wish you all a very Happy Christmas/Happy Holidays/Happy Festive Season and a wonderful and healthy New Year.

Thanks this month for the lovely cards from Davorin Jenko Primary School in Slovenia, so much time and trouble was spent making them and they are all beautiful and their English is fantastic. Hello Kitty featured highly in the cards this month – how to make a girl smile!! Thanks to Lucy for the lovely name made out of beads and Jayne for the clock, snow globe and pen, it will all compliment her pink sparkly bedroom! The snow globe is waiting for a picture of her birthday party! Thanks also to Post Pals for the choccie parcel. Thanks too for Nico’s stickers.

Update 7th November 2010

The end of the month was fairly uneventful. Not only did Alicia get her ‘pen license’ at school (which means she can now use fountain pen rather than pencil at school) but at half term assembly she also got a headmistress special award for being in school every day for the whole of the half of term!! She hasn’t done this since late 2007 so everyone was really pleased for her and she felt pleased too. However it has taken it out of her and she was very tired by the holidays. We had planned to go away but I decided to cancel and let her rest at home for the week and hopefully put off the inevitable hospital admission. Our hospital appointment was cancelled. We had a lovely week at home and had lots of fun with our Halloween gifts; they had two Halloween parties and went trick or treating. We even got to meet Jacqueline Wilson one day which was fantastic!

Alicia went back to school on the Tuesday after half term, but by Wednesday I knew I was pushing my luck, so we decided it was time for all good things to come to an end and she went into hospital on Wednesday night! Her lung function was down to 35% so it was time. She was upset, but understands and actually it’s a good time for her to have a rest so that she is fully recovered in time for December (birthday and Christmas and weekend at Centre Parcs, fingers crossed!). She got sent a lovely quilt from Lovequilts so that has gone in with her and she is getting used to being spoilt by the nurses again! We have just had a weekend down at Chase, the hospice where she is cared for, so that was a nice break from the hospital routine and a rest for all of us. She will probably be in hospital for at least two weeks (that is the minimum time) unless she doesn’t get better and it will be extended. We have an appointment at GOS this month which is a CF clinic, but they are also doing tests to see if she has diabetes so we may find out then if she does – just another thing to add into the mix really.

Thank you once again to everyone that sends both of the children post and continue to put smiles on their faces! Thanks for the lovely Hello Kitty cards from Laura and Sarah and the 2 cards from overseas! Amanda and Alicia could be sisters they like so much of the same things! Sarah G your letters keep us laughing out loud, we all love them so much! Thanks to Mandie once again, she loves your post. Thanks also for the Halloween gifts from Post Pals and Sian, they were great and we had fun making them. They both loved the bracelets from Donna, thanks. She is going to make the peg dollies this week and thank you Mary for those. Emma, thanks for the notebook and your note to me (mummy) too!

Update 18th October 2010

September was a surprisingly quite month. I spent the whole month waiting for Alicia to end up in hospital as she has done for the last 3 years, but no, she has now not been in hospital since she was discharged on 12th August to come to Portugal!! This is now the longest she has been out of hospital in 3 years and is doing really really well! It is also the longest consecutive number of weeks that she has spent in school for 3 years, she has almost done half a term! All of these may seem like small things to many, but for children like Alicia it is a miracle! She did however say to me last week, “When am I going to hospital?” I asked her why and she replied “I think I’ve been at school too long now!!” It just goes to show that you do get institutionalised even at 9!

Not only did Alicia manage to finish the 7 1/2 mile sponsored walk (well she cycled) but she lead from the front the whole way round and her dad had to run to keep up with her! We managed to raise loads of money too which is great.

Nico started his Judo class and loves it. He has settled into year 1 well, though has been worrying that you have so much more work to do now at school and not enough time for playing!

Even though we’re half way through October now, I will update at the end of the month, especially as we have hospital next week which may change things. But just to say she has to go into hospital for 3 hours everyday for Tues, Wed and Thurs of this week to have an IV infusion to strengthen her bones as she has osteoporosis and they are trying to stop the deterioration of her bones. She has to have this every 3 months and we are a month late, purely because they were waiting to do it at the same time as she was in hospital but she hasn’t been in so we have to now do it as a stand alone treatment. The medicine tastes revolting (even though it goes through her veins she can taste it!) and makes her really tired. I’m worried because the last time she had it as a stand alone treatment she got really poorly and ended up in hospital! I suppose all good things have to come to an end!

Thanks this month to Mandie for your wonderful gifts again and for remembering Nico! To Rachel, Alicia loved the Tinkerbell stuff. To the person in Finland, thanks again for the Hello Kitty stickers and Kate W thanks for yours too. Helen and Hayley, we’ve made and sent the cards already and thanks for the other bits too. To Sarah, your letters make us all chuckle, thanks!

Thank you Post Pals for making my children smile and all those other children too!

Update 10th September 2010

Well, best laid plans never turn out right! We were in GOS having Alicia’s lung transplant re assessment and that went really well, she doesn’t need listing this year. This is fantastic news and we could at last get excited about going to Portugal 2 days later! Saturday morning we were packing to go home and the doctors came in and said she couldn’t go! Typically, she has had a port a cath for 6 1/2 years and never had a line infection, but the day before we’re due to fly to Portugal she gets a fungal infection in her line and so she can’t go! We decided that Nico and I would go on to Portugal (we were going with her granny, aunt, uncle and cousins too!) and if she was allowed she would come out later. A week of iv antifungal drugs and the line had to come out but she got discharged from GOS at 5pm on Friday and at 9am on Sat was in Portugal! Hooray! Well done to daddy for sorting that so quickly! So she got a week of her holiday at least! Since the line came out she has been better than she has been for the last 6-8 months and surprisingly her lung function has been improving instead of deteriorating like normal. She has been making the most of not being on her iv’s daily and we have swum loads as this is something she can’t do all the time because she can’t swim when her line is accessed. She has also had loads of deep baths and pampered herself, as she can only do that every two weeks normally. It’s the small things in life really!

The rest of the holidays whizzed by and we had a lovely time. All too soon it was over.

For the first time in 5 years she got to start school on the same day as everyone else as she wasn’t in hospital and she was really happy about that. She has also managed a whole week in school and is only in hospital now because she is having her port put back in so hopefully we won’t be in for long! She seems to be loving being in year 5 and long may that last.

We wrote a list yesterday of thank you’s for all her post and of course left it at home! Off the top of my head here goes; thanks to Mandie for the photos, dvd, stickers, pencil etc, Sarah the beautiful necklace (her comment on seeing it was ‘how did she know my birthstone?’, Poppy the poodle, what a lovely letter, Kim and Viks and someone (no name on the card) from Finland who sent cards! Her cousins live in Finland so she was very excited about this! Mike for the email, and I can’t remember who sent her the pencil case kit, but thanks. To Jane, thanks for the animal jokes and card. I hope I have all of this right – like I said it’s all off the top of my head. Sorry if I have missed anyone or attributed the wrong name to a gift or card, I have a memory like a sieve! Nico loved his doorbell, thank you! It has really cheered Alicia up getting all this post and she feels very special and loved. I thank you all too as it is so nice to see a smile on her face again!

Well, what does the next month hold? Hopefully out of GOS this weekend. She should have started her Diamond riding tomorrow, but we will see. She was really looking forward to that but as always… best laid plans! No planned admissions for the moment for iv’s but we will go back to her home iv treatments. We are doing a sponsored walk for CF in two weeks time, 7 1/2 miles round Richmond Park which hopefully she will walk the whole way, no mean feat for her, but we will take her buggy just in case! Needless to say Nico will probably run the whole way, chasing the deer!

Alicia is out of theatre now and all went well. Port is back in and a sleepy, grumpy, but brave girlie is lying next to me! Thanks for all the wonderful work you all do!

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Alex H

17 July 2011

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.

She then had 6 weeks continued radiation and chemotherapy during which time she lost her hair and then began her third cycle of chemotherapy.

Family Update July 2007

How can it be that just over 2 years has gone since our beautiful daughter left us? Last week she would have been 17 and so it would have been driving lessons next, there is always something that we are missing out on. Her little brother is now 11 months old and fortunately a very good baby. He has been a positive addition to the family and has helped Joshua and Bethany to focus on something good. We think of Alexandra all the time and many of her friends are still in touch. We know we are at the stage now where things will never get any better, and we just have to try and live each day, some are better and more bearable than others, but our lives will never be the same without our darling daughter. Thank you to all those who still keep in touch with Bethany and Joshua it is nice to know they have not been forgotten.

Family Update August 2006

I had a baby boy on 8/8/06 (14 months to the day that Alexandra left us!) We have named him Isaac Alex and he weighed 7 lb 1/2 oz, the smallest of my babies. Alexandra would be absolutely besotted with him and we think of her all the time.

Family Update July 2006

It’s now a whole year since Alexandra left us and we have to say that it does not get any easier, nor will it ever! Not an hour goes by when we don’t think about her, her beautiful smile and her bravery. She has missed so much this last year, doing her GCSE’s, going to the school prom, leaving school, and starting the rest of her life, whether going to work or college. There seems to be some milestone that she is missing every month.

Alexandra’s uncle completed the London to Paris cycle ride and we are proud to announce that he raised over £1500 for the Paediatric Brain Tumour Research Fund!

Family update April 2006

Thank you for continuing to contact Joshua and Bethany. We are still looking for sponsors for Alexandra’s uncles London to Paris bike ride in aid of the Paediatric Brain Tumour Research Fund.

Family Update February 2006

Alexandra’s uncle and two of his friends are doing a cycle ride from London to Paris at the end of May in Alexandra’s memory in order to raise funds for Paediatric Brain Tumour Research, which we all of course feel is a very worthwhile cause. Those of you who follow cancer treatments may have seen the recent report that the government is not agreeing to some new treatments being paid for by the NHS, and these are horrendously expensive, so only a handful of people would be able to go private. We were extremely lucky in that Alexandra’s Oncologist at the Royal Marsden ensured that she got the very best and latest treatment and it was funded by the Hospital, we are aware that not all children are so lucky.  Of course in the end it didn’t work for our darling girl but it may have given her a few extra precious months for which we will always be grateful.

If anyone would like to sponsor John in his cycle ride please let me Post Pals know and we will forward the details.

Family Update January 2006

Just to say we went to Antigua in December which was Alexandra’s favourite place in the world, and carried her wish on 8th December which was 6 months since she left us, and scattered her ashes. We had a small service and her dad and Bethany both said a few words, and then we scattered her ashes into the sea. It was very emotional but something that she had said she wanted before she left us.

Thank you for the cards and messages still being received it is good to know Alexandra is still in people thoughts. She was on the front page of the recent Make a Wish newsletter describing the wonderful weekend we had in London.

Family Update end of September 2005

It is now 15 weeks since Alexandra left us, and it doesn’t get any easier, some days are worse than others but they are all bad.  We are still being told by people we have never met how they have heard of her bravery and courage and she is touching lives still.  Joshua struggles to go to school, he always had Alexandra there 2 classes above him, and now he finds it hard that she is not there.  Bethany misses all the girly and sisterly things they used to do.  Our lives will never be the same and we think of our darling daughter every day with love, smiles and tears. Thank you for keeping in touch with Joshua and Bethany.

July 2005

Post Pals released a balloon in Alex’s memory with the quote “Its not how long a star shines, what is remembered is the brightness of the light”


Family update July 26th 2005

Still receiving some emails about Alexandra which is nice.

Joshua and Bethany are struggling to cope with the loss of their dear sister Alexandra and appreciate the kind thoughts and gifts and emails which they have received, many thanks.

Update 8th June 2005

It is with great sadness we announce that Alex lost her battle on Wednesday 8th June, she passed away surrounded by many family and friends.

Update 5th June 2005

We took Alexandra on a fabulous holiday on 7th May, we flew to Disneyworld Florida for a week and visited all four of the parks, Alexandra had a wonderful time and was able to go on almost all the rides, the highlight was a trip to Discovery Cove where she swam with the Dolphins, which she has long wanted to do. She also loved Sea World.

We then flew to Antigua and stayed in a hotel where we have been several times before, and where the Staff all know our family, so we were specially looked after. Alexandra was able to relax after the exhausting week in Disney and came home looking refreshed, when we left the hotel many of the staff, and a few guests, were crying, so it was a very emotional time!

Alexandra’s health is now declining rapidly and she is relying on a wheelchair to get her around. Unfortunately the tumour in her lungs has developed rapidly and this is giving her the most trouble at the moment, and she is finding breathing increasingly difficult. Our aim is still to keep her pain free as much as possible.

Update 31st March 2005

Alexandra has just finished her 2nd cycle of the new chemo and is now awaiting two scans in April, before continuing with cycle 3. She has been very tired and has missed quite a bit of school, although her spirits are quite good and she is enjoying her new puppy Pickle.

Update 28th February 2005

Alexandra spend 9 days in hospital earlier this month with severe back pain, unfortunately it was discovered that this was caused by the cancer spreading to her back. Apparently it is very unusual for this to happen, less than 1% chance! She is now trying a different chemo, which lasts over 11 days, and by day 7 or 8 she is feeling very poorly and sick. She begins again on 14th March, she is pretty fed up at the moment.

Update 8th February 2005

Alex is at home but feeling very groggy as a result of the new medication she is on.

She’s not at school and finding the mornings particularly hard so it would be nice for her to receive some mail, to brighten those mornings up a bit.

Alex is obviously well aware that her health has dropped and so that hasn’t helped.

Thank you everyone.

Update 2nd February 2005

Alexandra has just spent a gruelling 9 days in hospital. She has also started a new course of treatment.

She is now home but quite poorly and feeling understandably down, so could use some TLC at the moment. Please drop her an email or card.

Update 20th January 2005

Alexandra is about to undergo her 5th course of chemo, and she will have another scan in early March to see how well the tumour is responding to the treatment.

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Sophie A

16 July 2011

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).

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Abbie S

16 July 2011

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.

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