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.

Thursday, 28 February 2013


We didn't get to leave hospital after all.  The blood pressure became quite a problem causing severe headaches and nausea.  Ryan stopping eating again and generally felt quite rubbish.  The cause is suspected to be the higher levels of the immunosuppresent drug Tacrolimus.  The switch from IV drugs to oral has meant the drugs are effecting Ryan differently and it is a fine balance getting the levels right.

The immunosuppresent drug has now been reduced and the nausea has gone but the blood pressure may take a little longer to correct itself.  Ryan has been started on blood pressure tablets and today has been his best day since the problems started last weekend.

And so instead of being discharged to the parents house Ryan has been moved out of isolation in the bone marrow transplant unit and into a room in the oncology ward.  (There is no longer swine flu on the ward, thankfully)  We have our own room and as Ryan has an infectious virus in his stool we are 'barriered'. This means that we are not allowed to use the communal kitchen, as children with low immune system eat in the kitchen on this ward, and so if Ryan or us want any food or drink we have to buzz for a nurse to get it for us. (As if they haven't got enough to do!) This is not ideal as you can imagine, although the staff assure us that is has to be this way.

Looks like tea and toast will be on the menu for Gareth and I of an evening, although Gareth is considering buying steak and potatoes to see if the nurses would cook steak and chips for him!  

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