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, 13 March 2012

Back at Sams House

Ryan seems to be quite at home in Sam's House (a home provided by Clic Sargent). We have been given a self contained flat which is on the ground floor. It was designed to enable children who have an infection following a bone marrow transplant to leave hospital without the risk of the infection spreading throughout the rest of the house. We have made it clear that should such a circumstance arise we will happily move into another room within the house where we would have the use if a communal kitchen. For the time being though we are extremely grateful of such a lovely room. Over the years we have donated things to the house, such as Ryan's cot - which had belonged to his cousins Freddie and Lily. It is still here and has been used loads and still referred to as Ryan's cot. We also donated a small chair and footstool and Ryan was delighted to see it in our room!

He was such a brave boy this morning, he did have a few tears and needed quite a bit of coaxing to get onto the table but eventually he co-operated, his mask was fitted and the required measurements and photos were taken.

He then wanted to visit Day Beds and Ward 34 to see 'his nurses'. They were obviously delighted to see him and said how well he looked and it was sad having to tell them the reason for our return. We did a bit of shopping then returned to Sams House for the rest of the day. We will have full details of the immediate treatment tomorrow but do know that Ryan will not be having chemotherapy this week which means we can come home this weekend.

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