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.

Sunday, 10 June 2012


Ryan has been well the past week despite needing a blood transfusion and regular injections of GCSF to boost his neutrophils.  With it being half term he managed to catch up with some of his friends although the weather limited any outdoor activities.  

Here he is scooting with his cousins Gabriel and Archie:

Later today Gareth and I will be driving to Heathrow so that we can be in Tubingen early tomorrow morning for our meeting with Dr Lang, the consultant in the charge of the facility where they will do the haplo-identical transplant.  We have not been apart from Ryan since he relapsed in November 2010 and so it will be very strange to leave him, Ryan still has mixed feelings about it.  At least it is only the one night but there is more to having Ryan to stay then just an over night bag – we have to explain what to do in an emergency with his central line and how to administer an injection of cortisone should he become unwell and make sure that my sister Jackie has the number of the local hospital!  But our lovely CLIC nurse lives fairly close to Jackie and has given us her personal mobile number and has said that Jackie can get in touch at anytime if she has any concerns about Ryan.  Best to cover all angles that way we know that he will be just fine!

But we have tried to make it as much of an adventure for Ryan as possible and so this afternoon he is going to the Circus, courtesy of CLIC Sargent.  He is going with his auntie Jackie and cousin James and is very excited about it.

Yesterday his cousins from London came to visit which was great and the boys played football for hours! There have been lots of fund raising events taking place this weekend; the little ones sky dive team did their jump, Uncle Paul ran his marathon, Donna Hawkins held a Waxing event (Gareth had to have his chest waxed!), Uncle David and Team did their 50 mile cycle ride, Alex and Ben's fun day and auction in Portsmouth is being held today and the 4 soldiers in Germany from 64 Fuel Sqn’s are currently in the middle of their 24hour event – details of all these events are on the Events page.  Thanks to everyone for all the hard work that has gone into making these events happen.  I hope to update the events page with photo’s from all these events over the next week.

1 comment:

  1. Such a brave little boy! See you at Miss Dot.com , Rache x

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