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.

Monday, 21 May 2012

Some news...

We found out today that Ryan's MIBG scan is clear!  This means that there are no neuroblastoma cells taking up the radioactive dye. Unfortunately it doesn't guarantee that there are no neuroblastoma cells in Ryan's body but this is the result that we had hoped and prayed for.  The MRI is not yet reported and without this we do not know the full picture.  Both scans will be reviewed at a tumour board meeting in Bristol on Thursday and so we are hoping to find our more news following this meeting, at the end of the week.  I think it is fair to say that neither Gareth or I can really believe this, maybe we are afraid to believe that it is true after having been in the situation of getting told results of previous scans, in Germany, only to find that the whole truth is a slightly different story.  But on face value this is good news, great news and we hope that by the end of the week, we will know even more.

A bit about our fundraising:

In Portsmouth on the 10th June Alex and Ben Keyte have arranged a family fun day in aid of Ryan's appeal.  They have never met us or Ryan but have been so touched by his story after hearing about him from his Auntie Vicki (Gareth's sister) that they have given up hours of their spare time organising their event.  Alex is Vicki's hairdresser.  I appreciate that most people that read this blog do not live near Portsmouth but in addition to arranging a fun day they are also having an auction.  The items for auction are incredible and there is no reason why anyone needs to miss out as they intend to accept e-mail bids for the items on offer.  Full details of the auction are on the poster and events page but include:

  • Signed Manchester United Football with certificate of authenticity (COA)
  • Signed Steven Gerrard photo with COA
  • Signed Arsenal Team photo with COA
  • Signed Leon Spinks Boxing glove with COA
  • Signed Amir Khan Boxing Gloves with Letter

I have added details of the auction to the events page and also added a poster to the Downloads page in the hope that you might print it and display it at work or anywhere that it would get notice by the right audience.

To read an article about Alex that appeared in the local paper in Portsmouth click here.  Thank You to both of you, Alex and Ben, for everything you are doing to help Ryan.
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