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.

Saturday, 14 July 2012

Ryan has been well since the last update – he has seen his cousins and three more of his friends have been able to take time off school which has been lovely.  Last week he got to have an afternoon at Crealy Adventure Park with his girlfriend Ella, he went again with Ben last weekend and again this week with his cousins Gabe and Archie – we were really lucky with the weather and there is loads to do there outside which is where we prefer to play.  He loves it there and hadn’t been for a couple months prior to this.  He also went to Clip and Climb again, this time with Ben, and seems to be faster than ever at getting to the top! And then his friend Josh came over for the afternoon.  He is lucky to have so many good friends and they have brought him lots of smiles.

The decision to change his chemotherapy had the desired effect and his blood count has been the most stable it has been in months and he hasn’t needed as many GCSF injections – in fact his neutrophils rocketed to 16 following an injection in the second week after chemo, which is 3 times the normal upper limit! He also hasn’t had platelets for 2 weeks this Monday coming and although they are falling and currently only 29 this is still the best they have been too.  Lets just hope it has also done it’s job as far as mopping up any stray cancer cells.

Since the last update we have also learned that the date of Ryan’s transplant in Tuebingen has been delayed until the 4th September.  This was obviously a huge disappointment, but completely out of our hands.  The unit can only accommodate 8 transplant patients at a time and so only when one is discharged can another be accepted.  The 2 other English families that are going out for treatment also had their dates changed.  It is highly likely that this date will change again, either brought forward or delayed.

Ryan’s blood has not yet been taken for matching but it has been confirmed that Gareth will be the donor as our blood tests showed that I have anti-bodies to a specific virus in my blood and that causes a big threat to Ryan during transplant.  In healthy adults the virus can cause few, if any, symptoms but tends to reactivate intermittently, again without symptoms but for Ryan the symptoms could be life threatening.

So how did Ryan take the news that Gareth was to be the donor? – he cried – with happiness and gave me a massive hug and said he really didn’t want me to have the needles in my arms or any injections.  Then he looked at Gareth and said ‘But you’ll be fine Dad’  Bless!  Obviously I would do anything for Ryan, anything but I am a big woos with needles and have to admit I did feel a little relieved.

Next week Ryan has to have another cycle of horrid chemotherapy.  His hair is almost gone now, not that any of his friends have batted an eyelid when they have seen him.  He has managed to maintain his weight and so we are hoping that he tolerates this next cycle similarly the last one.

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