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. 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.

Saturday 12 January 2013

Ryan and the instructor in a 'race'
After having platelets on Wednesday we decided that we would take Ryan back to Feldberg in the Black Forest for a ski lesson on Thursday. He was very keen and wanted the lesson as soon as we arrived! 

As most of the other children there were not complete beginners they suggested a one on one lesson for an hour with an instructor. It soon became apparent that Ryan didnt have the physical strength of most children his age as he couldnt do a snow plough which is where the front of the ski's touch and back are wide apart and forced into the snow - this move is the brake and therefore an essential basic control. However that didnt bother Ryan as he was quite happy with both ski's pointing straight now the hill! (So much like his Dad!) He had great balance and held a good position on the ski's and amazingly didnt fall over. It just meant we had to catch him at the bottom to stop him going into the fence!  He had a great time but was exhausted afterwards and we even thought he might fall asleep at lunchtime but he didn't. He is now the proud owner of a ski-ing medal and certificate which says 'Super Fast'! 

Then yesterday it was back to clinic for an infusion of immunoglobulin (to give him protection against infection while his immune system is compromised). 

Whilst in clinic we got told the results of wednesday's t-cell analysis. 21.47% now originate from my donated stem cells! A very significant increase which the doctors are very happy with and our glimmer of hope feels a bit brighter! Needless to say we are (cautiously) delighted to have this good news and have fingers and toes crossed that the new cells continue to multiply. 

Our hope too is that Jamie's parents John and Vicky also get some good news very soon, Jamie remains critical but after a very worrying start to the week has remained stable on the ECMO machine which is oxygenating his blood. There have been many ups and downs this week but he has a CT scan of his lungs on Monday and we hope and pray it shows improvement. 

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