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, 4 March 2013


Unfortunately the improvement in Ryan didn't last longer than 24 hours; the nausea and headaches returned the next morning and he continued to feel exhausted.  The levels of the immunosuppresent drug present in the blood are now less than half of what they were and so the doctors informed us that the symptoms are probably due to the low levels of sodium in the blood.  Several other levels are also low such as magnesium and phosphate but sodium is the most effected.  Ryan had been taking tablets to supplement his sodium but these were not enough to raise the levels.  The exact cause of these low levels are not known but it is listed as a side effect of the immunosuppresent drug…..

And so on Saturday he was started on a continuous infusion of sodium which has slowly been increasing the levels in his blood.  By Sunday the difference in Ryan was noticeable, the nausea had gone and he was much brighter in himself.  He started eating, albeit very small amounts, but at least that is better than nothing and a step in the right direction.

Another piece of positive news is that yesterday Ryan's platelets incremented, without a transfusion, for the first time since October.  They were 34 on saturday and today they are 66.  Still a long way to go until they hit normal ranges (150-600) but a positive sign that the stem cell boost that was infused 19 days ago has grafted and his body is trying to produce new cells. His HB seems stable but his white blood cells are still being suppressed by the steroids and immunosuppresent medication.

And finally we would like to wish my lovely niece Chloe, who is 18 today, a very Happy Birthday.  We are all sad to be missing her birthday celebrations but hope that she enjoys her special day.

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