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.

Sunday, 22 April 2012

Ryan has now finished the first five days of chemo and, as we were able to have this in Exeter, he has enjoyed seeing all of 'his favourite nurses' - not forgetting his consultants, doctors and everyone else working on the ward who all welcome him back like a member of the family. We are so lucky to have such a good relationship with our hospital, it makes all the difference in the world. He skipped in and out each day.

So far he has tolerated the chemo well with only nausea or sickness first thing in the mornings but has felt quite well by the afternoons. We are hoping that he will not develop diarrhoea next week. His platelets are falling but the rest of his counts are stable. This could be due to the fact that in the last two weeks he has had a stem cell and then bone marrow harvest which would have depleted him of stem cells, it is unlikely to be the effects of the chemo, yet.

During the week Ryan got to see one of his friends that lives close by but was quite sad about everyone being back at school. He got to see the teachers in hospital each day and despite the fact he normally calls learning boring he actually enjoyed doing it. For the next few weeks he should be able to see his tutor a couple times a week too. He has 16 days off treatment but in that time his will counts will drop so he will be neutropenic and needing blood products, they they should slowly recover in time for cycle 2.

We are still awaiting confirmation that the bone marrow harvest collected sufficient stem cells and have been disappointed to find out that the sample of bone marrow sent to Vienna could not be processed as there was a problem with the storing of the sample. We are awaiting results of the bone marrow trephines, which will be another week.

Yesterday we went along to watch his mate Jack playing football and then, as he was feeling well, we went to the Tennis Club event that had been arranged to raise money for Ryan's appeal. We hardly saw Ryan, he ran around playing tennis games with all the other children, and had fun throwing sponges at the victims in the stocks. He had a great time, which was even better as some of his friends were there. Huge thanks to Emma Chant and Steve Ashton for organising the afternoon and to all those that helped at the event, which raised £674 for Ryan's appeal.

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