Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

Wednesday, 11 March 2015

Its almost been another 3 months and so I thought an update was overdue but the fact that there hasn't been one is a good sign and these days tends to mean there is not too much to say.

Ryan has been going to school everyday, albeit with a later start and occasionally finishing early as he still gets tired concentrating for long periods of time.  Over the winter months he seemed to have a constant cold and/or cough but with the exception of the week before last hasn't needed time off school.  He did recently get a really high temperature and after 4 days of it getting worse not better I took him in to see his consultant, who confirmed he had both a chest and ear infection.  He needed a course of antibiotics so he was understandably wiped out for a week but is now back to his usual self.  Ryan had been telling me he was 'fine', 'stop stressing mum' and that he was 'just hot'!  This has got to have been the first 'proper' illness he has had since starting school, which is a great sign of his new immune system coping with the germs it is encountering daily.

Ryan continues to enjoy school and later this month takes part in his first school play, he has a part as a narrator and is really looking forward to it.  This month he also took part in his first World Book Day and really looked the part of Harry Potter.  He has decided he wants to have his hair longer and announced the other day that he thought he finally looked like 'a normal boy', bless him.

Ryan as Harry Potter for World Book Day


However the day coincided with a scheduled hospital appointment for a venesection (blood draw to reduce his iron overload) and so he didnt actually arrive at school until 2.30, but at least he got to school and of course the hospital staff got to see him in his great outfit.  This time he had 170ml of blood taken and so for the next couple weeks he will be feeling a bit tired.  He had had the same hospital appointment 2 weeks earlier but unfortunately the cannula wouldn't work and he was too upset to have it re-sited in his other arm and so it was delayed.

15 of the 17 syringes of Ryan's blood
He only has to go to hospital every 12 weeks now and although it is for an unpleasant procedure he still looks forward to going and seeing all the doctors and nurses that have been part of his life for so many years.  He has also had his lung function fully investigated and although it is impaired it seems to be stable and so he is being weened off the steroid inhaler and asthma drugs that he has been on since his transplant.  We will have regular lung function tests over the next few months to make sure that his lung function remains stable.

Other than that his next hospital visit will be for an MIBG scan, which will take place at Bristol Children's Hospital, and should be around May time.  Ryan doesn't like these scans as they involve a cannula for the injection of a radioactive dye but after discussions with the doctors we unfortunately feel that currently this is the best scan to detect any signs of cancer.  Ryan accepts this in his usual way saying ' well dont forget I'm going to need a good present!'


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