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.

Thursday, 9 August 2012

Ryan had a great weekend and got to go out on his motorbike with his mate Jack. I havent been to watch the last few times, as i have enough stress to deal with in my life as it is, but this time Ryan talked me into it. They were both very good and go far too fast for my liking!

This week though has been far from great. On Monday Ryan had bone marrow trephines (a core of bone) and aspiates (liquid) taken from both sides of his back under GA. While he was asleep the consultant also had to do nasal aspirates which involved washing out his nasal passages with saline. This was requested by germany to identify any potential infections prior to transplant. But there wasn't any mucus there, only a couple boogies apparently! Unfortunately, despite having gone to sleep quite happily, ryan woke very tearful, sobbing uncontrollably for quite a while. He didnt seem to recognise Gareth or I for what felt like ages. Apparently he had wriggled during the procedure so was given additional anaesthetic which may have caused him to feel so emotional. The bone marrow was packaged up and sent to Vienna again for analysis and this time it was received in good condition and is currently being processed.

Tuesday was a quiet day at home with his x-box. He was very sore and stiff and after talking with his consultant we gave him some morphine which helped a lot. But his friend Ben came over for the afternoon and stayed for tea which cheered him up lots.

Yesterday we had to go to Bristol Children's Hospital for the first part of an MIBG scan. We put numbing cream on both his hands so he was ready to have a cannula when he arrived, which he really wasnt looking forward to. There were lots of tears and it really hurt when it went it and unfortunately really hurt when the radioisotope dye was injected so a rubbish time for him. But his back is loads better and he showed us by performing a dance act early in the morning!

We spent the night at Sam's (the clic sargent house) and all the staff there were pleased to see him. This morning he had to lie still for about an hour for the scan and we are heading home now and await the results.

This weekend we have arranged his early birthday party which he is excited about so at least after such a pants week he has something fun to look forward to!

No comments:

Post a Comment