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.

Monday, 10 March 2014

Another month has passed and what a month it has been!

The view from our apartment!
Our planning came into reality and we took Ryan to France skiing, to Les Arcs 2000, and it was wonderful.  The apartment we booked proved to be a lot smaller than the photo's suggested and so it was quite a squash with friends and family staying but I think having lived in one room for 9 months in Germany we were used to be organised and nobody complained.  The apartment was fairly close to the slopes but still meant a 10 minute walk in ski boots each morning.  Ryan found the altitude exhausting initially, but both his breathing and his stamina were much better by the end of the holiday.


We were lucky to also have friends staying in the village so we had lots of fun and Ryan loved spending time with everyone.  It wasn't always blue skies and sunshine, there was plenty of snowy days so all in all the conditions were great.

The resort was ideal for beginners but also had more challenging runs and lots of off-piste too.  It was possible to go to neighbouring resorts via chair lifts and Ryan skied the whole of the area!  He really liked the Freestyle Snowpark which has purpose built jumps and the Bordercross which was also purpose built like a racetrack in the snow, with banked turns, bumps and jumps!  Right up Ryan's street and he loved it.  Gareth is a great skier and Rya loved to try and copy his Dad and was soon spending more time off the side of the piste rather than on it!  We were really surprised by Ryan's strength and determination, within days he no longer needed the harness we had bought for him and was skiing by himself.  Im really not sure how I am going to keep up with him in years to come?!  We will upload some video to YouTube and post a link when we have done it.


And now the medical bit and its only a brief but significant update: Ryan's full body MRI in January was clear - he remains 'with no evidence of disease' and his autologus t-cells have now reduced to just 1% meaning that his body is no longer capable of overturning the transplant:  both of which which was wonderful to hear and a great start for our holiday....

Ryan's first cannula experience was 'ok'.  There were lots of tears when it was being inserted, it didnt work well enough to enable a venesection (blood draw) to be done but once it was in the tears stopped and Ryan coped well for the 4 hours that the infusion ran for.  Next time (the 17th March) he will need the cannula inserted into a larger vein in his arm so that blood can be taken to reduce his iron overload.  He is very apprehensive about this, understandably.  His consultants have decided that they will coincide the venesection with bone marrow aspirates and trephines so that he only has one trip into hospital so he is even less keen about this but will hopefully cope as well as he usually does.
Ryan getting some air on the jump at the Freestyle park