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.

Tuesday, 26 May 2015

Just wanted to do a quick update to let you know that Ryan's recent MIBG scan still shows no evidence of disease.  It has been 6 months since the previous scan, which is the longest we have been without a scan and so the wait for results this time was even more significant for me.  I am hoping that one day the waiting will get easier and although I can manage to keep the negative thoughts and 'what if's' at bay, they are still there lurking in the back on my mind.  To hear the news that the scan is clear still makes me emotional.

These scans are always in Bristol Children's Hospital and involve an over night stay and this time both the CLIC Sargent House's were full and so we had to find a hotel to stay in.  It made us realise how different things would have been for our family if the CLIC Home from Home's were not there, they really were a haven for us.  We try and make the trip to Bristol as enjoyable as we can once the cannula and radioactive isotope injection have been done and so this time we went to the cinema to watch Avengers - Age of Ultron.  Because it was the middle of the afternoon we had the whole cinema to ourselves which was perfect.  Ryan was able to return to school as couple days later once the radioactive drug had left his body.


He is feeling well and enjoying being a typical boy.  It is hard to get a photo of him these days as apart from when he is on his x-box he is never sitting still.

Yesterday we went on a leisurely bike ride with friends and when we sat down for well earned light refreshments all the boys wanted to do was skid on the grass on their bikes despite having already cycled miles!!

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