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, 2 June 2012

I meant to say in my last post that we have heard from NB Alliance, the charity that we are fund raising with, and they have confirmed that they have sufficient money in their charity reserves to make the advance payment for Ryan's treatment.  This is a big weight off our minds, as you can imagine.  As we have said it has always been our intention to try and raise the money and this is still our aim so that the Charity can do the same for another family in the future.

Ryan has a busy long weekend planned including a visit to clip and climb with his girlfriend Ella to celebrate her birthday, this is a bit of a risk with his poor immune system but likely to be last time he has the opportunity to do something like this in a long time. He also wants to get out on his motorbike with his mate Jack, which is good timing following a platelet transfusion yesterday, we have a BBQ garden party to go to and hope to get out on the push bikes again too - although it's a bank holiday so it's bound to rain!

This weekend's events that I know about:
Saturday 2nd June: Suzanne Yeo is doing a 15,000ft tandem sky dive at Dunkeswell Airfield, Honiton
Sunday 3rd June: Daniel and Arron are running the Plymouth half marathon
Monday 4th June: Tracy Derges has a stall at the Exminster Village Fete selling cakes, wristbands, cards and great raffle prizes.
Tuesday 5th June: Jackie Chalk has a stall at the Waterfront Jubilee Street Party selling wristbands and raising awareness of Ryan's appeal.

Thank you all so much for giving up your time to raise funds and awareness of Ryan's appeal.

Finally my brother has an event planned next Saturday 9th June: a 50 mile cycle ride from Exeter to Okehampton and back again.  He has made the event open to anyone and everyone, with or without sponsorship, and will set the pace on the slowest riders ability.  But so that he can plan the event and so that they don't leave without you, if you would like to join the team on the ride please contact Dave on 07809 295380 or 01363 82918.  For more details go to http://www.justgiving.com/dave-smith4ryanedwards

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