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, 11 August 2015

It's been a while since I have written an update and it's great to report that 'no news is good news'.  Life has been busy with normal things, I love normal mundane life, it's so easily taken for granted but it is the best.  We had a slight hiccup in June in that Ryan was recalled for an ultrasound of the neck following a routine tumour board review of his scan from May but thankfully this did not reveal anything abnormal although did put us in a spin until the results were known.  

Also in June my lovely sister Jackie got married and it was so good to get together with all the family, it doesn't happen very often and it was great to get together and for everyone to see Ryan looking well.  Ryan had the best time at the wedding, he was so looking forward to the evening disco as Jackie had given him the important job of starting the dancing to a song that he choose, The Macarena! He didn't stop dancing all night and thoroughly enjoyed himself.  

Throughout July Ryan got to be involved in all the usual school events for the first time, he went on school trips, to the summer fete, summer disco and sports day.  He still has a later than normal start but stays every day until the end of school and has even been attending a couple after school clubs: most recently ultimate frisbee and science.  July was also a significant month for me as I have a new job, I cant quite believe that I was lucky enough to get a job at Ryan's school, working in the office. Returning to work after so long was a bit of a shock to the system but it has been a positive step for me in many ways, especially being part of something other than the world that is cancer.  
At the start of the summer holidays we have had a visit from our good friends the Bird Family and Ryan really enjoyed spending time with Adam's sister and brother and even managed to talk Jessica into trying out Clip and Climb, despite her fears. It was lovely to catch up properly although unfortunately Gareth was ill with a fever and flu like illness and conjunctivitis, it was awful and put him in bed for a week - the first time I have ever known him ill.  Unfortunately as he improved Ryan caught the same illness and has been very poorly for the past ten days, although is now on the mend.  Hopefully by the end of this week he will be back to his usual self.  

We have planned a short break towards the end of August, Ryan's first taste of camping in sunny Cornwall.  Fingers and toes crossed for good weather!  And before we go back to school we will also be celebrating Ryan's 9th birthday - he hasnt actually decided what he wants to do yet and keeps changing his mind but we will make sure it is a very special day.  

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