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, 28 April 2012

The past week has flown by and we have been really busy with all things fundraising.

Firstly there are now photo’s of the Tennis Event on SteveAshton’s website; you can also find details of the tennis coaching and club sessions that Steve holds and his contact details: http://www.satennis.co.uk/club-gallery/

This past week Gareth has been on Exe FM and Heart FM and we have been on ITV Westcounty Tonight.  I was very nervous about being on TV, my mum has only a handful of photo’s of me during my whole life as I have also dodged the camera so having a massive one pointing at me in my living room was a nerve wracking experience.  But I needn’t have worried as Richard Lawrence from ITV edited the interview into a very nice piece which got our message across and raised awareness of Ryan’s appeal. You can see the website write up and the interview if you missed it here:http://www.itv.com/news/westcountry/story/2012-04-26/child-cancer-victim-campaign/

This week has been a busy one for fundraising events; on Friday there was a  ‘Wear Red for Ryan’ day and many office's, shops and business wore something red to work and made a donation to Ryan’s appeal – it will be some time before all the money is counted and showing on the website but we did make a surprise visit to the Co-op Supermarket in St Thomas Precinct and Ryan had his photo taken with the staff, who were also raffling a food hamper in aid of his appeal.  They raised a total of £226.63, which included donations from customers to the store. We really do appreciate every penny. Bath Travel in the precinct, were my sister Jackie works, also supported the appeal and sold cakes on the day and raised £170.17, and Exeter College had a collection and raised £167.58.  We really cant thank people enough for donating and getting involved.

Here is Ryan with his Auntie and the staff at the co-op

Today there have been two events; the Cake and Coffee morning at Alphington Village Hall arranged by Becky Hill, which raised a massive £1150!! I understand that the hall was packed from the minute it opened until the event finished – it was a huge success.  Thank you to everyone who baked cakes, bought cakes and helped on the day. 

Also today was Daniel Hambly who was having his whole body waxed in aid of Ryan’s Appeal.  I know only too well how painful waxing is, most women do, but for a man to have his WHOLE body waxed is an entirely different ball game!! The pain must have been excruciating!  The event started at around 11am and I think the last strip was pulled off at around 4pm!! His ‘friends’ even sponsored him to have an eyebrow waxed!  The shop also held a raffle.  I will let you know the total raised when themonies have been counted but whatever amount it is we are in awe of Dan for going through with this event.  Garethdid manage to make it along to witness some of Dan’s pain and to take him a video message from Ryan to spur him on.  We are hoping for this event to be covered in the Express and Echo with some photo’s of his ordeal!

Since finishing chemotherapy Ryan has been surprising well, he hasn’t had the anticipated diarrhoea, yet - which is fantastic, he taste buds have changed and his appetite has reduced considerably but he is eating enough to maintain his weight, and his counts have been stable, so far.  He has just started to feel tired which is probably a sign that his counts are about to drop and so he will probably have less energy in the coming week.  That said today he had a birthday party, his good friend Alfie was 5.  We hadn’t told Ryan about the party as we weren’t sure that he would be well enough to go but on Friday we told him that he was going to a Clip and Climb party and he was very excited – Alfie was equally excited when he heard Ryan could come. In his life he has been to so few parties either due to being intreatment or having no immune system and therefore being at risk of infection and so it was not only Ryan that had a great time but it was lovely for Gareth and I to see him doing something fun and being excited with a group of children his own age.  Here is a photo of him inaction.

Finally, we are still waiting to find out in the bone marrow harvest was a success and also the results of the bone marrow trephines but expect to find this out next week. 

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