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, 1 April 2012

A weekend at home

Ryan's blood results last Thursday were really good, in fact his neutrophils were so high that we were told to stop GCSF injections until Saturday. Ryan was very pleased to hear this! As he didn't need any blood products this meant that after radiotherapy on Friday we came home for the weekend. We expected that Ryan would need blood and or platelets on Sunday and so the plan was we would have a count done in Exeter on Saturday.

However when we had the count done his counts again were holding and had not plummeted as expected, Ryan never seems to react as anticipated.

Ryan had his cousin sleepover, caught up with friends and family and generally has had a good weekend. Today he has complained of lower back pain, any pain is always a worry, but this can be a side effect of high dose GCSF. After talking to his consultant we took him in for another blood count today to see what his neutrophils were doing and as they are still high we are hoping that this is the cause of his pain.

Tomorrow morning we return to Bristol for radiotherapy. On Tuesday his blood with be tested to discover the levels of stem cells that have been produced by Ryan's body as it recovers from chemotherapy. A stem cell is essentially a 'blank' cell capable of becoming another type of cell i.e. red blood cell, platelet or white blood cell etc. These cells will be collected from Ryan's blood via a vascular catheter, which is surgically inserted into his groin. His blood will then be extracted, passed through a machine which spins off the stem cells and the remainder of his blood is returned to him.

He will need a general anaesthetic to have the vascular catheter inserted and we are dreading telling him about this. It will greatly restrict his movement, confining him to bed and from what we have been told will be uncomfortable but should not be painful. All in all it will be a awful experience for Ryan but at the same time a successful stem cell harvest is essential to his future treatment. We are looking forward to putting this week behind us.

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