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.

Friday, 31 May 2013


Last weekend we got to meet up with our friends for a couple of hours as we hoped and had a day out and about in the black forest.

On Tuesday it was back into clinic for IV medicine and, as a 'low level crackle' could be heard in Ryan's lungs, he also had a CT scan.

On Wednesday Ryan had more IV medicine in clinic and we were told that the the CT showed slight changes since the one they did at the end of March, which was an indication of GvHD.  Not the news that we wanted to hear by any means.  Ryan was therefore started on a steroid inhaler, more prophylactic antibiotics and a drug to open his airways.  

Today it was back into clinic again for more IV medicines and we got the results of the autologus t-cells which showed an increase from 9% last week to 15%.  So a week of disappointing news really, although looking at Ryan we can only see improvements.  He is eating and sleeping well, slowly gaining a little weight and gradually feeling stronger and we are very thankful for that.

We are hopeful that we may be able to return home for a couple weeks sometime in June and will be talking to our consultants here and in the UK next week to see if this weeks developments will change things.

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