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, 31 May 2012

The weekend after learning Ryan was in remission was very emitional. We felt elated, and so very very lucky that we were in this position again. But then also very apprehensive about putting him through the haplo-transplant. This doesnt mean we are having doubts. But Ryan has had a transplant before, we know the risks, how poorly he will be and it also commits us to another 9-12 months of hospital treatment, in another country when what we would love to do is take him away on holiday and let him enjoy life. We like to think that we fill every day when he is feeling well with fun things to do but it obviously isn't the same. But we know what we have to do and why we are doing it.

We have arranged to have a consultation with Dr Lang in Tubingen on Monday 11th June. We need to fly from Heathrow the evening before for a morning appointment. It is not mandatory for Ryan to come, and as we never really like to talk about treatment in front of Ryan, we have decided he can have his first sleep over at his cousin's house. He was excited about this but after some thought has decided he will miss us! After all we are never apart from each other so its only natural but hopefully he will enjoy it.

This week Ryan should have started his 3rd cycle of chemo but his blood counts, platelets and neutrophils, were too low. He has continued to need GCSF injections to boost his neutrophils and his platelets today are only 13 so he will be having a transfusion tomorrow.

This morning we were in hospital for a synacthen test. Ryan stopped producing the steroid cortisone as a side effect of dexamethasone. This has meant we need to give him hydrocortisone 3 times a day and carry an injection of cortisone with us at all times in case he become unwell as the body needs cortisone to respond to a crisis situation. In such a situation the pituitary gland in the brain releases a hormone which gives a signal to the adrenal gland to produce cortisone.

Today we didnt give him his morning dose of hydrocortisone but instead went to hospital at 9 o'clock for a special test. Ryan was injected with a synthetic form of the hormone released by the pituitary gland and then blood taken at regular intervals to see if his body could respond appropriately.

We also had a review with Ryan's lead consultant from Bristol and he is going to start the process of applying for funding for treatment, although it is expected it will be declined!

This afternoon Ryan has a review with his tutor and her manager to assess how his home tuition is going. We are really pleased with his progress and despite the fact he only sees his tutor twice a week for one and a half hours, she says he is doing really well. He didnt see her at all for 5 weeks when he had radiotherapy but she says he had remembered everything she had taught him so she could pick up where she left off. I have to be honest though and say that he still thinks learning is boring and would rather be learning stunts!

A bit about our fund raising; THANK YOU, THANK YOU, THANK YOU!! We cant believe that in the last month the fund has increased from £30,000 to just over £60,000! Its just amazing and we are so so thankful to everyone helping us.

I have spent some time updating the events page with all the public or sponsored events I know about and will try and keep it up to date. Thank you to everyone supporting these events. We try and attend any that we can and I'm sorry that we can't make them all but this past weekend we managed to catch up with the Robinson Family Cycle Relay team after they finished their 80 mile relay. I've added some photo's and news of amounts raised at recent events to the events page, please take a look.

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