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.

Thursday, 27 September 2012

Day +9

Ryan woke up again with a sore throat and mouth despite the morphine having been increased yesterday and so this morning the morphine has been increased again.  It is still considered a relatively low dose but has really helped and he is much more chatty today, although still very tired.   Although he has been in pain his condition has been better than we expected, as he has still been able to swallow and talk.

We had good news today that Ryan's white blood cells have started to appear and, with the help of IV GCSF, should increase over the next few days; today they are 250 (or 0.250 as they are reported in the UK)

It will take days for the new cells to repair the mucous membrane of Ryan's mouth, throat and intestine.  As a result of the chemotherapy the top layers of skin havent been able to renew, some areas are worse than others and obviously we can only see the damage in his mouth but this gives us some idea of the pain he is experiencing and the reason that morphine is needed. There are patches in Ryan's mouth that are white and wrinkled and then that layer of skin will come away and a red raw patch will be exposed until the new skin grows.  This is part of the normal healing process but usually the most painful part.  This is what will happen throughout Ryan's body, the top layer will come away and then the raw skin will heal - so unfortunately the pain usually gets worse before it gets better.  This healing and inflammation of the raw skin causes temperatures and an increase in the infection markers (CRP) within the blood meaning that Ryan will continue on IV antibiotics until his temperature and CRP are within normal ranges.

Ryan is also experiencing back pain which is a result of the GCSF stimulating the new stem cells and although uncomfortable is also a good sign.

And so today is a good day.

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