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, 26 May 2013


On Wednesday i updated our facebook page with the following update: (don't get too excited as the news changed on Friday).

Last week we didn't get any t-cell results but were shocked to learn that adenovirus had showed up again in Ryan's blood. They repeated the test on Friday and it felt like a long wait until Tuesday when we learned the test was negative again. The virus is obviously trying to rear its head but the t-cells are keeping it at bay at present. We were also told that the virus was no longer detectable in the stool which is the first time in months. 

But the best news was that all t-cells are now 100% donor, no autologus t-cells exist. Now we just want this weeks blood, stool and t-cell test results to show the same great results! 

In himself Ryan is feeling ok, he still gets tired easily but there is still so much going on in his body. But at the weekend we took him to a theme park for a few hours and he had a great time on the rides, and is still a bit of a speed demon! It was a great feeling to see him having some fun.

That was the update i was going to put on here too but then on Friday we got the results from Tuesday's blood and t-cell analysis:
'The adenovirus is negative and autologus t-cells are 9%....'
'Sorry did you say 9% - last week it was 100% donor?.......' 

Apparently, on closer inspection, errors were found in the results and the analysis had 'failed' or so they think. It is a sensitive test and we knew it could sometimes 'fail' but still. 
And so 9% is an improvement on the result of 11% 2 weeks ago so we have to be thankful for that. 

As Ryan's GvHD symptoms are under control the immune suppression has been reduced again and so we simply have to wait until the end of next week for the next results. I forgot to state in the last update that the virus HHV-6 remains in the leukocytes but not in the blood plasma.

We have had some hospital free days but the weather has changed so we haven't been up to much. Tomorrow though we hope to meet up with friends who our touring the area on their motorbikes, weather permitting.  Not posted a photo for a while so here is a recent one:


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