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.

Saturday, 5 May 2012

A spell in hospital

Ryan developed a cough earlier in the week which was half expected as the radiotherapy had touched the top part of his lung and could have happened much sooner. However as usual it is difficult to know the exact cause of the cough as there are so many germs around. As the week went on the cough got worse and as Ryan's blood counts started to drop he seemed to be brewing a temperature. Overnight on Thursday his temperature hoovered just under 38 so I packed a bag and set my alarm to check it every hour and in the morning it hit the magic number 38.1. We were due in hospital anyway for platelets but went in early. Ryan had blood cultures taken from his line but when his temperature was checked it was 37.7 and so he wasn't started on antibiotics but they wanted too monitor him as his pulse was high 140-150bpm. After lunch the consultant came to review him, had a mandatory play on the wii with Ryan and said we could go home.

However at 4pm when we were packed and getting picked up his cheeks were glowing again so I checked his temperature and is was 38.3. He was therefore admitted to hospital and started on IV antibiotics. Which means a minimum of 48 hour stay in hospital. He was upset at the time, as he was meant to be seeing his mate Adam and family this weekend, but we have assured him, and Adam, that we will get together as soon as possible.

In himself he is tired but ok, we have his beloved wii and he is re-discovering his games as he has been playing the x-box at home lately. (he does have a half hour time limit at home though!) His chest sounds tight and congested and he has a bit of a snuffy nose but if his temperature stays down he can come home Sunday night. He cheered up when his good friend Josh came to visit and the two of them were soon laughing and joking and playing games on the wii.

He is due to start chemo Monday but it has been delayed to Tuesday due to the bank holiday. But if his blood counts don't recover it will be delayed until he is not neutropenic (neutropenic means you have no means of fighting infection as your white blood count is low)

Ryan is hoping for a speedy recovery as he is hoping for another go on his motorbike on Monday apparently!

No comments:

Post a Comment