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.

Tuesday, 24 December 2013

We wish you a Merry Christmas

Its been another month since I updated and such a lot has happened and its all good.

Our holiday in Euro-Disney was just perfect from the journey, to the hotel, to the weather whilst we were at the park and the way we were looked after while we were there.  Ryan had a wonderful time, we all did.  Miles, the owner of Peak Performance Gym that gave us the break, had a friend at the park Karen, and with the help of her friends and contacts within the park she arranged some special surprises for us like a night at the Wild West Show, a personal meet and greet with the character Stitch and a pass which allowed us to avoid the queues - for once we really did feel very lucky and very spoilt.  

When we left Euro-disney Ryan's adventure wasn't over as then it was an overnight stay in a hotel near London ready to meet Father Christmas at Lapland UK - Ryan thoroughly enjoyed the day, helping the elves in the toy workshop, decorating gingerbread men with Mother Christmas, ice-skating and then meeting the big man himself, Father Christmas.  He had been a little nervous, worrying that he would be disappointed and that it wouldn't be the REAL Father Christmas and only a 'helper' but as soon as he left the cabin in the woods his smile said it all - It was the REAL Santa - he has finally met him!!  If you follow us on Facebook you will have seen our photo's but if not click here and here for the Euro-Disney photos and here for the Lapland UK photo's. (I hope the links work!)

Ryan is excited for Christmas, he has been counting down the days, his sack is ready and there are presents under the tree ready to be ripped open on Christmas morning.  Just as it should be.  But for us just being here at home with Ryan feels like a miracle.  With the complications that Ryan experienced things could have been so different and although we don't like to dwell on that it is the harsh reality.

At this time of year our thoughts are especially with the families that we have met over the course of Ryan's treatment, we feel privileged to have met these families but especially to have known their remarkable children.

We wish everyone following our story a very Happy Christmas, cherish all the important things this year and focus on what makes Christmas really special, your family and friends.  

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