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.

Tuesday, 5 February 2013

Ryan's night was much the same, no significant deterioration and no improvement either.  He felt sick and was sick and overall had less sleep than ever and so today he was back to being very subdued and not speaking.  The procedure for the investigation of the gut took place in his room and he was so good while the consultant set up all the equipment and the only questions he wanted to ask were what was the consultant's name and how long would it take.  Dr Sturm introduced himself and said it would take 15 minutes.  There were no complications and Ryan woke up from the sedation without any tears and soon was back to sleep again.

This afternoon the doctor on the ward has confirmed there are no evidence of bacterial or viral infection and that by tomorrow the analysis would be complete and a diagnosis of GVHD is expected.  This gives him the ability to add some medication to try and reduce the frequency of the bowel movements and to try and retain fluid in the blood which will be passed as urine and not passed through the bowel.

Ryan has so many side effects of both the GVHD condition and the numerous medications that he is on that I cannot write about them all, it is not expected that his condition will improve short term, this will be a gradual process.

No comments:

Post a Comment