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, 27 August 2012

More good news...

We heard last week that Ryan's bone marrow aspirates that had been sent to Vienna show no evidence of disease - the result we had been praying for.  There had been a delay and initially they had found 7 cells that had been classified as 'suspicious' and these had needed further analysis.  These have now proven not to be neuroblastoma.  Subject to receiving the results of the bone marrow trephines (the core of bone) this will mean that Ryan remains in remission, for the third time in his life, which will put him in the best possible position for the haplo-identical transplant.

Ryan continues to look and feel really well, he has been happy and active and has been enjoying all his early birthday presents.  He has been to the skate board park with a couple friends and his new JD Bug scooter which he loves and has generally been having lots of hospital free time.

This weekend we took him to a fund raising day at the Coaver Club who have made Ryan their charity of the year.  As the weather held off and all the events could take place outside there is less chance of Ryan catching an infection and so we decided to let this be his last day of mingling with so many people - he had a great time on the bouncy castles, penalty shoot out, dancing, and generally running around like a looney.  His energy amazed people, those that knew him and those that met him for the first time, he really is an amazing boy and I really believe that his attitude helps him cope with everything that he has to endure.

On paper his counts have been stable, his platelets are hovering around the 20's, his HB is holding around 8 (borderline for a transfusion) and his neutrophils are wavering around 1 and so he has needed the odd shot of GCSF.  He is having a count tomorrow to see if he actually needs blood this week and on Wednesday he has been invited to a day out courtesy of CLIC Sargent at an airfield and has the chance to fly in a small aircraft with one parent (Gareth) and apart from that we are having a much quieter week to ensure that he remains well before travelling to Germany.


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