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.

Friday, 24 October 2014

Life is continuing to feel more normal, and slowly we are allowing ourselves to make plans more than a week or so ahead which is something we haven't felt able to do for a long time.  It is still hard to accept normality unreservedly especially when other families that we are close to receive bad new about relapse or post treatment complications.  My thoughts are always partly with others.

Since the last update we have had a few hospital visits; Ryan developed a rash which spread all over his front, back and down his arms and legs.  He felt well but it reminded us immediately of when his GvHD started and so we took him into be checked over.  His consultant reassured us that she didnt think it was anything sinister and gave him some anti-bacterial lotion, thinking it could have been caused by a low grade infection picked up from swimming or something similar and after a week it had disappeared.  He had an Audiology appointment to ensure that his hearing had not deteriorated further, as he has some high frequency hearing loss due to treatment.  He did make the lady laugh as when she asked him if he knew why he was there he informed her that he did but that it was a total waste of time as he can hear fine "even when my mum is whispering stuff she doesn't want me to hear!"  And he was right as the results were unchanged which was reassuring.  He had a full body MRI scan and urine catecholamines to check for any evidence of disease and both were completely clear.  His next scan being an MIBG scan which is being arranged for sometime in November.  He has now had an appointment come through with the respiratory consultant but that is not until the end of November.  He also had a review with his lead consultant from Bristol Children's Hospital who was delighted to see Ryan looking and feeling so well.

Since we returned from Germany we had wanted to meet up with the other families that we met out there from the UK and so in August we managed to see Jamie Inglis family from York.  Ryan and Jamie's sister Poppy hit it off instantly and seemed to have a special friendship despite never having met before which was really lovely to see.  And in September we met up with Vanessa Riddle and her family, who live in Scotland, and again it was like we had only seen them yesterday.  The bond that you make with other oncology families is one that is life long.

Ryan is now 8, (going on 18) he had a fantastic birthday party and this year for the first time he invited some of his new school friends to his football party and had a great time.

This year Ryan went to school on the first day of the new school year for the first time ever.  He is now in Year 3 and has been made so welcome by the children at his school.  The staff at the school and his tutor have done everything possible to make his integration into school a positive enjoyable experience and so he genuinely enjoys going to school.  He has joined the after school football club again and has swimming lessons and has never been more active.  He goes to school every day although starts a little later than others.  On 3 days he stays until 1.30 and 2 days until the end of the day.  He does find school tiring, but his time in school is steadily increasing as his stamina builds.  He is eating well and has regained most of the weight that he lost in the summer.

We are so very grateful to see Ryan enjoying life to the full.  On the way to school this week the sun was shining and the birds were tweeting from the trees and he said to me "I really love this world that we live in mum".  And then I realise that it is not just Gareth and I that will never take things for granted again but Ryan too.


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