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, 15 August 2012

The Birthday Party...

Ryan loved his early football birthday party!  When I started this blog I said that Ryan has always wanted to play in a 'proper' football match and now he has - his friends and cousins meant that he had a 5-a-side football match, they also did penalty shoot out and skills training.  Ryan loved every single minute! Even a shower of rain didn't seem to be noticed.  Massive thanks to Ed for organising the football and for helping make Ryan dream come true.  Thanks also to Exwick Civil Service Club who kindly didn't charge us for the use of their facilities.

This week Ryan has more tests, yesterday he had an MRI, which involved him lying still inside the extremely noisy MRI machine for approximately 50 minutes.   To explain exactly what is expected of him I really have to show you a photo - he is strapped to the table, unable to move.  The sound from the machine is almost deafening at times and so he has to wear headphones to protect his ears.  His music of choice is played into the headphones and this time it was Alvin and the Chipmunks.  Once he got fed up with that Gareth talked, well shouted, to him very loudly trying to keep him distracted.  He did so well and managed it without any tears. 

Tomorrow he has a CT scan and an ultrasound, both of which will be a breeze compared to the MRI.  We are still waiting for the results of both the bone marrow tests and the MIBG scan from last week - I so hate the waiting and was pleased to have the party to focus on at the weekend.  Since then I have to say that the waiting has sometimes got the better of me and I find it hard to concentrate on anything else.  
It never gets any easier waiting for results and it's not something I get used to but you just have to get on with life and wait.

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