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, 17 April 2012

Ryan started a new regime of chemo yesterday; temozolomide and irrinotecan. This involves Ryan taking 5 capsules of oral chemo, 2 hours after and one hour before food. Then an hour after having the tablets, being connected for just over an hour IV chemo.

We opted to give Ryan an early breakfast, wait a couple hours to give him the chemo tablets and then head into hospital with a packed lunch. Ryan has had no immediate adverse reactions and so far is tolerating the treatment well , but it's still early days.

The most problematic side effect is severe diarrhoea along with the usual side effects of sickness,low blood counts, hair loss. So diarrhoea is something that we are hoping that Ryan won't get, it can occur this week or next and so there is still some time before we will know if he has avoided it. The chemo is given daily for 5 days and then 16 days recovery before the next cycle. He will receive 2 cycles before being re-staged and all of this will be done at our local hospital in Exeter.

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