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, 21 November 2012

Ending with some good news....

We have had clinic every day so far this week and the week started with disappointing blood results. 
On Monday Ryan HB had dropped to 7.1 and his platelets were just 5.  The blood test was repeated and his platelets were 10 - both well below the limit for transfusions so a bag of platelets were ordered urgently for that afternoon and a bag of blood for the following day.  His platelets had been stable in their 20's the previous week and no one can give us an explanation as to why they might have suddenly dropped.  The only glimmer of good news was that his white blood count was still good.

On Tuesday, when we went in for the blood transfusion, his WBC had also dropped and so he was given some GCSF to boost it up again.  The doctors told us that they were planning on giving a further infusion of T-Cells the following day.

Today we went in for the T-Cells but had to wait 3 and a half hours while the analysis of the cells sampled on Friday was finalised.  Eventually it was confirmed that there was no change and all the T-Cells were still Ryan's.  So a further infusion of 50,000 of my defrosted T-cells was given.  

But it was worth the wait; this afternoon we found out that Ryan's MIBG and MRI scans were both clear of disease; Ryan remains in complete remission!  We will never ever take this for granted and, although we can't waste energy worrying about it either, it is always a relief to be told this wonderful news.

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