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.

Monday, 1 October 2012

Day +13


He got out and here is the photo to prove it:

He actually enjoyed the hour and I cannot begin to explain the happiness I felt watching him walk out the transplant unit. There is still a long way to go, he still has a fever, CRP and is on morphine and many other iv drugs but this hour was a momentous achievement. But I know Gareth felt the same. When Ryan left isolation following his autoglous bone marrow transplant transplant at the age of 2 he cried in pain when he tried to bear his weight as he had been in bed so long. With our help he managed to walk the 30 paces from isolation to non-isolation before getting back into bed. It was heart breaking. This time though he wanted to walk, we visited the small play areas within the empty hospital (it was deserted as it was a sunday) and then ventured outside to the slide and basket swing. He did need the buggy on the way back to the room but it was still amazing to see him.

He was as good as gold coming back into the room. We had to remove the clothes he had worn outside, wash him and get him reconnected to his iv machines.

His temperature is persisting and with only paracetamol it isnt going below 38.0 so this morning, he is very tired. The consultants here have never known anyone be allergic to novageen and as it is so effective against fever they wanted to be 100% sure that Ryan was reacting to it. So this morning when his fever reached 39.1 they wanted to give him a half dose of novageen and monitor him, with anti-histamine at the ready. Ryan was not impressed and told the nurse they were really mean making him get hives.....  Sure enough within 5 minutes he started coughing, went pink and got hives! But even with a half dose his fever reduced to 38.2!

Today, without the help of GCSF, his WBC is 4,740 and so today he has 2 hours of freedom. His CRP has also increased but we are told this happens during engraftment but as his temperature is persisting unfortunately also means he will change to 4th line iv anti-biotics until the CRP is less than 1 (today it has increased to 3.0 or 30 as it reported in the UK)

He has to wear a mask everywhere except for in our room at the parents house, the car or in his room in isolation and will need to do so until Day +100 but so far isn't complaining. His 'clean diet' has to continue for the same period.

1 comment:

  1. Ryan you are amazing! :-) xxx

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