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, 16 September 2012

Day -2

Ryan woke at 5.30pm yesterday after 5 hours sleep and wanted breakfast again! This time it stayed down and so he had seconds. He had a reasonable nights sleep and today had the second dose of melphalan. I hope and pray this will be the last dose of chemotherapy he ever has to have.

Although he did feel sick this morning Ryan hasnt actually been sick and has eaten small amount of breakfast and lunch and his mouth is still ok. We are very surprised he is so much better today and really really pleased. So he is back on-line on the x-box!

Today is the end of conditioning and tomorrow he has a drug called cell cept which is designed to reduce the risk of Ryan rejecting the stem cells.

First thing tomorrow morning I have to go to a different clinic where my stem cells will be harvested. My sister is coming over for a few days to help out and Ryan is looking forward to her coming. Hopefully I will get to see Ryan later in the day and by the end of tomorrow I should know whether I have to repeat the procedure a second day.

No comments:

Post a Comment