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, 29 March 2012
On Tuesday we went out for tea with his new friend Beck as it was Beck's birthday which was a real treat for Ryan and the boys had a great time.
Ryan's blood counts haven't dropped as yet and but we are having them checked again today as they are expected too. He has had 2 of 8 injections of GCSF and as it is a high dose it is 0.7ml which looks quite a lot in the syringe and stings a LOT when it goes in so there are unfortunately lots of tears but not for too long.
Yesterday we found a new park and so Ryan was able to enjoy a bit of the lovely weather -here is in on the rather high rope bridge!
Tuesday, 27 March 2012
Today Ryan starts GCSF which should encourage his bone marrow to start to recover. This is normally given as an injection and as Ryan got used to having injections in Germany we are hoping that he will tolerate these injections without too much upset, although his reaction to this news was understandably not great. In the past we have requested that this is given IV which means a 2 hour visit to hospital but the injection is something that we could give him at Sam's house and gives him more time out of hospital which we feel is the better option.
Saturday, 24 March 2012
We would really like to say a huge thank you to everyone who has donated to Ryan's appeal, we can't believe it has already reached almost £11,000 although we realise there is a long way to go it is still a very significant amount in a relatively short time. Thank you too to everyone who is giving up their spare time to help raise awareness of Ryan's appeal, we really appreciate it.
Friday, 23 March 2012
We had originally hoped to spend the afternoon at home tomorrow but that idea is no longer going to happen. We could drive home and back on Sunday but we will wait and see how Ryan is feeling before suggesting it to him.
Thursday, 22 March 2012
Wednesday, 21 March 2012
Today we hope to find out when he is being admitted for chemotherapy, it will be Friday, Saturday or Sunday and will mean a 24 hour stay in hospital. Here he is being super brave, the mask covers his head and shoulders and is bolted to the table during radiotherapy.
Sunday, 18 March 2012
Thursday, 15 March 2012
We have been told that radiotherapy can cause the tumour to swell and although this is a good sign in that the treatment is working we cannot afford for Ryan's tumour to swell because of its position. So on Monday Ryan was started on steroids to counteract any swelling. He also started a daily tablet to protect his stomach as the steroids can cause stomach ulcers. So far we haven't seen any sign of mood swings so fingers crossed. There is little chance of him gaining weight because although he's eating well he can't stay still for long and is literally sprinting up and down the corridors at Sam's House.
Wednesday, 14 March 2012
This afternoon we took Ryan into town to get a charger for his x-box controllers, the x-box being his reward for being such a big boy and lying still for radiotherapy. While we were there we were able to take him on a big wheel, it was 60 metres high and he loved it. Here he is at the top...
Tuesday, 13 March 2012
He was such a brave boy this morning, he did have a few tears and needed quite a bit of coaxing to get onto the table but eventually he co-operated, his mask was fitted and the required measurements and photos were taken.
He then wanted to visit Day Beds and Ward 34 to see 'his nurses'. They were obviously delighted to see him and said how well he looked and it was sad having to tell them the reason for our return. We did a bit of shopping then returned to Sams House for the rest of the day. We will have full details of the immediate treatment tomorrow but do know that Ryan will not be having chemotherapy this week which means we can come home this weekend.
Monday, 12 March 2012
Today we are packing and go to Bristol later. We are assume for 4 weeks but hope to get home in between treatments if Ryan is well enough. We still don't have a firm plan but we know radiotherapy 'verification' is tomorrow and treatment starts Wednesday. We will keep you updated.