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.

Thursday, 12 April 2012

It’s only been a week since my last update but such a lot has happened! I am always conscious of not writing too much but lately it has been very difficult not to – so sorry in advance!

First an update about Ryan – he is well, happy, lively, loud – lovely! You might already know that Ryan has a quadbike, he has had it since he was 2 and riding his quad is something that he does with his friend Jack, who is now 8. Jack got a motorbike last year and has already outgrown it so at Christmas Gareth bought the bike Jack had outgrown for Ryan. This weekend was the first real opportunity that he had to go on it. Ryan couldn’t touch the floor or reach the brakes so obviously I was stressing about it – after all that is a mum’s job – but I needn’t have worried as Ryan was a natural and only fell off when the bike stalled. Here is a link to YouTube if you would like to see them in action:

This week Ryan has caught up with lots of his friends, he has been out on his push bike, playing football in the park, on his bouncy castle, playing the x-box and generally having fun. Tonight we go back to Bristol as Ryan is first on the list for a bone marrow harvest – he will have a general anaesthetic and his bone marrow will be extracted from his pelvis and the stem cells within the bone marrow will be spun off and collected. The reason that this wasn’t performed last week is that you also risk collecting cancer cells and so a peripheral stem cell harvest is the preferred route but when this fails this method is a back up, we are hoping that this will be successful and sufficient cells are collected. At the same time a sample of bone marrow will be taken for analysis, we have requested that this is sent to a laboratory in Vienna, which is where were are sent when Ryan was a patient in Greifswald. We are urgently trying to find out if this is going to be possible. Vienna perform a series of very sophisticated immunological tests of the samples and can detect 1 neuroblastoma cell in 10 million!

Ryan will have a very sore back after this procedure but providing he is happy to we will return home later in the day. He will need a quieter weekend than the last one but hopefully will soon be bouncing around again. On Monday Ryan starts a new regime of chemotherapy but I will go into that more on my next update…

Secondly I can’t finish without mentioning our fundraising; it is going really well and we have had lots of help and support from family and friends, I truly don’t know what we would have done without them.

On back holiday Friday and Saturday M&S gave permission for a bag packing and collection to be done in aid of Ryan’s appeal – lots of our friends and family gave up their spare time to help and a huge total of £1,397.29 was raised. Thank you to everyone that gave so generously and for all the kind messages that were received.

Also at the weekend friends of our took part in a Jet Ski competition in Port Talbot, the original competition was cancelled due to lack of waves but as so many people had booked accommodation an alternative event took place. Debbie and Hannah, whose partners were taking place in the competition, did a collection and thanks to the generosity of all those in attendance a massive £610 was raised. I have added Debbie’s account of the event and a link to some photo’s on my events page.

Jamie Quick, aged 6, raised £75.50 when his family held an Easter Auction in aid of Ryan’s appeal and Sara Smale raised over £200 with a coffee and play morning at Tedburn St Mary. Reggie Greenham also opted for a collection for Ryan instead of presents for his 80th Birthday and raised over £300. Thank you so much to all of you and to everyone that has donated to Ryan’s appeal page and to the pages of the team members. If you hold an event and would like me to include a piece about it on the blog please send me the details by e-mail and will happily share your news.

If you haven’t donated yet but would like to have a look at upcoming events on the events page – one of the next events looking for sponsorship is a full body wax! Daniel Hambly might now be starting to regret volunteering to have his whole body waxed for Ryan – his event takes place on the 28th April and you can visit his page with the following link: http://www.justgiving.com/Victoria-Hambly

If you have time to attend an event here are some dates for your diary; there is a Tennis Fundraiser at Exwick Civil Service Club on 21st April, Wear Red for Ryan days throughout April, a Cake and Coffee morning on 28th April and Zumba for Ryan on 12th May - for full details of these events please see the Events page....

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