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. 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, 10 September 2012

Day -8


Today is Day -8.  I havent explained that Day 0 is the day that Ryan will receive my stem cells. Then on Day +100 the clean diet restrictions are lifted and most of the medications that Ryan is now having will cease - but that is a way away yet.
Since my last update Ryan has tolerated the ATG much better, he has not had the high fevers and his blood pressure problems have not reoccured.  He has needed 2 platelet transfusions and a blood transfusion already though.  He has been happy in himself except when we ask him to have a break from the x-box! 
Today he has started the first high dose chemotherapy drug, Fludarabin.  He will receive this drug for 4 consecutive days.  This part of the treatment is called conditioning and is the preparation for the stem cell transplant.  During this period Ryan's existing bone marrow will be completely destroyed.
He is receiving many drugs to prevent infection and limit side effects but is totally oblivious as the machine which infuse the drugs are in a separate room and Ryan is connected to them by several metres of line.  
 
Here is a photo of Ryan today & of the machines that he is connected to.  Ryan continues to eat well at present and each day we have brought a small trampoline into his room to keep him mobile - seeing him jumping up and down while receiving such toxic drugs is a very strange experience but that is Ryan for you!
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