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.

Saturday, 9 March 2013


I haven't really got much change to report, some things have been getting better and some worse, each day it seems that Ryan has another symptom to deal with.

This past week his blood pressure has caused problems again and so the medication had to be increased to 4 times daily, meaning we need to give him tablets during the night.  The kidneys have continued to 'leak' minerals and so an ultrasound of Ryan's liver and kidneys was done to look for possible causes but nothing obvious was found.  And so Ryan has needed to have a continuous infusion of amino acids which replaces the minerals he is loosing and has remained an in-patient.  The doctors are now arranging a portable pump so that Ryan can become an out-patient with daily visit to the clinic and then sleep with us at the parents house.  It is hoped that this will happen sometime next week.

I cannot remember the last time that Ryan actually ate something significant, for example yesterday he ate a third of a banana, thats it, nothing else. He is drinking water and has tried energy shakes but simply has zero appetite and feels full or nauseas.  So he is still very weak and exhausted, his stomach is bloated and he is very thin, which I find upsetting to see, especially as he was at his heaviest ever weight just days before the GvHD started.  

When you look at the numerous medications that he is currently taking it is no surprise that he doesn't feel like eating, each day he has to swallow around 40 tablets/syringes of medicine, (it was more than this) some are to supplement his body and some are prophylactic medicines like anti-virals, anti-fungals etc.  At present all are essential but this can't help the situation with his stomach or appetite.

The viruses remain present in his stool and blood but are not currently causing problems, we just have to wait for his t-cells to multiply and destroy them.

The good news is that the steroids, which have the biggest impact on suppressing his immune system, have been stopped.  The other immunosuppressent drug has been reduced.  His blood counts have been quite stable since the new stem cells have grafted and he hasn't needed a blood or platelets transfusion for about 10 days now.  The GvHD on his skin is barely visible, his mouth is still slowly improving, his liver enzymes are 'ok' but his stomach is slightly worse again as we try and introduce foods.  The GvHD is still clearly effecting the gut, and could flare up again if the immunosuppresent drugs are reduced too quickly.  It is all a very fine balancing act to get the levels of drugs right - enough to control the GvHD but not to increase the side effects.

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