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. 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, 3 January 2013

Here's to 2013

Every New Year since 2008 we have had only one wish: that the forthcoming year will be the year that Ryan beat's this disease once and for all.  The hope remains as we start this year. 

We travelled back to Tübingen on the 1st January, after spending the night at the home of Family Bird as Adam was also home for Christmas.  It was lovely to see Adam and his family.  Adam is recovering from a painful surgery for an abscess on his bottom, it is so painful that he has to lie on his side, as he can't sit or walk without feeling pain but not once did he complain.  The boys enjoyed their time together and it gave Ryan something to look forward to when we had to leave home.  He felt sad about coming back to Germany not because of going to hospital or the travelling but because he will miss his friends. He said x-box live and Facetime are great but it's just not the same.  He has every right to feel that way but he didn't dwell on it and we hardly heard a peep out of him in the back of the car as he watched Tom and Jerry, Sky Kids and Home Alone.

We were due in clinic yesterday but when we called to ask what time to come in we were told that the blood test machine had broken and that they had 20 patients already waiting to be reviewed by a doctor and so they asked if we felt we could wait until tomorrow and so we are going in today at 1.30 which gave us plenty of time to unpack, settle back into our room in the Parents house and get some food shopping done.  

Ryan was pleased to see Vanessa Riddle who also came back to Tübingen yesterday for her third cycle of antibody treatment -she looks and feels great which is wonderful to see.  Within minutes he had her playing x-box with him!

Sadly our little friend Jamie deteriorated over Christmas, despite having fought to recover from the encephalitis he then got a second pneumonia which caused devastating damage to his already damaged lungs.  He is now on full life support with a machine oxygenated his blood outside of his body.  Over the coming days we hope and pray that his lungs will heal, they simply have to, it is not Jamie's time, he has fought so hard. It is absolutely  heartbreaking.
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1 comment:

  1. Sara McGinnis3 January 2013 at 11:52

    Get well Jamie! Much love prayers and thoughts from us! Thoughts to you all xxx

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