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, 21 September 2012

Day +3

Ryan had another reasonable night but woke at 5.30 and couldnt get back to sleep. He is still having fluids all night which are very necessary and although less than they were are still causing a disturbed night.

He has said his throat is sore this morning when eating breakfast and so he will probably start on a continuous infusion of low dose morphine later today as the pain will get progressively worse until the new stem cells graft. In himself he is still happy to see his teacher and play x-box but is noticeably tireder these past few days.

A couple days ago we started a laser therapy which is being trialled and is hoped to reduce the effects of mucusitis. It involves a laser being shone onto the effected area, cheek or neck, while Ryan is sitting in a chair watching power rangers. It is supposed to stimulate the blood circulation in these areas and slow the mucusitis. It has been used for 2 years in a hospital in Stuttgart with some promising results but not for long here. As there are no side effects and its painless Ryan agreed to give it a try. It's ten minutes each area twice a day, although so far we have only managed it once as Ryan's mornings are quite busy with the washing routine, breakfast, physio and his teacher but we are trying to rearrange it so we can do it twice.

Unfortunately I felt like I had a cold coming yesterday afternoon and during the evening was sure I had something so left hospital early. Although I feel ok and 'it's just a cold' and i'm not coughing or sneezing I am going to stay away today to ensure i dont pass anything on to anyone, especially Ryan. I hate being away from him but would hate it more if he caught a cold from me. Im hoping a day of doing nothing and a good nights sleep will sort me out and I'll be fine tomorrow!

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