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 January 2014

Time for an update

After a lovely December, Christmas was as special as we had hoped for Ryan.  This year we managed to see all our close family and friends as everyone was well and we had several get togethers which Ryan really enjoyed.  On Christmas Eve after sprinkling reindeer food on the lawn, and putting out carrots, mince pie, gingerbread man and milk for Father Christmas Ryan ran upstairs and came down with his autograph book that Karen had given him at Euro-Disney 'I bet no one else thinks to get Father Christmas's autograph!' he announced and left the open book and a pen beside the goodies!  On Christmas morning he ran down the stairs, shouting 'He's been AND he signed my autograph book!' His new prize possession.

During December we had been discussing with Ryan the need for his central line.  This line has been invaluable and was an access for IV medications, drugs and blood products for the past 3 and a quarter years and affectionately called his 'wigglies'.  In the last few months it has only been used once every 4 weeks but each week I flushed it at home with heparin to stop it blocking and also changed the plaster which secured it at the site it exited his chest.  Ryan still needs IV access every 4 weeks and so we made a list of Pro's and Con's : The only Con being the need for a cannula as Ryan is not great having needles but the list of Pro's was long: deep baths, showers, swimming, karate, freedom to play rough and tumble with his friends, being able to play without mum and dad watching like a hawk and for us not having an automatic admission to hospital for IV anti-biotics if he gets a fever over 38.0 degrees. And so on Tuesday the 7th January 2014 at 9.30 am Ryan went into theatre to have his line removed - a huge milestone for all of us.  The procedure was straightforward and took only a matter of minutes but as he needed a general anaesthetic it meant a morning in hospital.  The previous week the line had been used for the last time for the 4 weekly infusion of immunoglobulin, which he needs to support him while his immune system is very low, and for the blood draw to reduce his iron overload.  After a week, when the site had healed, he had his first long shower in years, he loved the feeling of the water running down his face and stood in there for ages giggling which was lovely to hear.  Next week is his first infusion via a cannula and we are hoping that he doesnt find this too traumatic.   He asked me to take these photo's to share with everyone:
Going, Going, Gone!
Ryan continues to attend school but still only 2 mornings a week for 2 hours each time, he arrives at break time but until this week he hasnt wanted to join in and play, just to observe, but now his line has gone he was off playing with his newly made friends and this is another huge milestone for him.  He then goes to a separate classroom with his tutor and 4 or 5 children from his class to reduce his risk of infection.  He is very much looking forward to joining the classroom and we keep hoping that his immune system will recover enough for this to happen, the numbers are slowly increasing but he is still way below normal and no one is able to tell us how long it is going to take to recover.    Once at safer levels his immune system will be comparable to a newborn baby.... We just have to continue to be patient and thankful that he is doing so well.

Last week he had a routine full body MRI scan to check for any visible evidence of disease.  Ryan has scans approximately every 3 months.  There is no set protocol for this but we agreed with his consultants to alternate between MRI and MIBG and to do bone marrow biopsies every 6 months.  I have seen him have this scan so many times but it still amazes me that at his young age he can lie in the scanner for 40 minutes or more, completely still!  I didnt take a photo this time but this is the last scan in July 2013 and it was exactly the same this time (although Gareth has finally stopped wearing shorts!)  We await the results.....

If you look carefully you can see his toes!
And now on to the next exciting adventure for Ryan - next month we are going to take him on a ski-ing holiday to the French Alps.  Ever since Ryan was born Gareth has been planning to take him away ski-ing as soon as he was old enough, but we have never had that opportunity. He did have a few hours on ski's on a of couple days while we were in Germany which he really enjoyed and he seemed to be a natural but that was just before he suddenly became very poorly.  But now as he no longer has his central line, he is feeling good and as he is not currently able to fully participate in school we decided it was a good time.  We are going to drive and have booked an apartment and will be able to have family stay with us so Ryan really is going to have loads of fun and is very much looking forward to it.  It feels almost unreal to me that we are making these plans, planning does not come easy after years to only being able to take things day-by-day, it is scary but exciting at the same time, part of me wants to wrap him up in cotton wool and the other part wants to make up for all the years lost in treatment.  We try and fill Ryan's life with fun and happiness, where ever we are we try to always give him happy memories that we hope will eventually outnumber any bad ones and we will always try and do our best for our gorgeous boy.



2 comments:

  1. Ryan looks wonderful health and strong! Enjoy your skiing holiday together. What a great vacation and adventure! Prayers for continued health for your precious boy.

    ReplyDelete
  2. DESPINA ZERVOUDAKI7 March 2014 at 14:31

    Hope you are enjoing your skiing my little sweet superman!!!!!!!!!! Wish you all the best for all your long life.

    ReplyDelete