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, 25 October 2012

Our worst fear.....

We had another clinic appointment yesterday and it's not good news. All Ryan's counts have dropped again. The doctors say there is now only a slim chance that Ryan will not reject the stem cells. This had always been our biggest fear. 

The reason for this is that somehow some of Ryan's own T-cell survived the conditioning treatment and are essentially attacking the bone marrow that originated from the new stem cells, and are destroying it.  The centre here in Tübingen have been doing haplo-identical bone marrow transplants for over 15 years and we had been told that for other cancers the host rejects the donor stem cells in 10% of cases.  However they have been doing haplo-transplantation for neuroblastoma for over 2 years and have not have a rejection for the 30+ children that have so far had the treatment.  Why oh why does Ryan have to be the exception the rule again!?! 

The doctors and consultants here need time to get together and discuss the best plan for Ryan.Yesterday they gave him GCSF to try and force the new stem cells to reproduce.  The T-cells that were infused last week will not be effective until next week at the earliest, the hope was that they would be stronger than Ryan's T-cells and be able to destroy them before they destroy the new bone marrow. However now there is only a very small chance that the new bone marrow will survive long enough for my T-cells to establish themselves enough to destroy Ryan's, it is only a tiny glimmer of hope.

However there are options, and the doctors say there are good options.  One option would be that Ryan be given back his own cells however although Ryan has a back up of his own cells but they were collected when he had 20% contamination with neuroblastoma cells and so we never want to use these. He also has a small number of his own stem cells that were collected when his marrow was clear. These are not enough for a successful transplant but may give him some bone marrow function.  This option would only be used should the powers that be decide that they want Ryan to go through the conditioning again and then for Gareth to be the donor.  The other option would be that Ryan is re-transplanted with my stem cells.  He would need immunological conditioning to destroy his surviving T-cells and should not need chemotherapy.  But at the moment this is all just hypothetical as the decision will not be ours. But we will ensure that we understand fully the reasons behind any plan that is made.  We may get a plan tomorrow but it may be early next week.
We are obviously devastated, and very shocked by this news.  I swing from feeling really upset to really pissed off.  The thought of putting Ryan through more treatment when he already had more than 99% people would have in a lifetime breaks my heart, it really does. But we have to choice as he without a functioning bone marrow he cannot survive.  
Ryan is totally oblivious to all this stress, he is happy and active, eating, drinking and sleeping well and he looks great.  He is the heaviest he has ever been and is really enjoying his food, although still only really wanting my home made spag bol most nights! The likely hood is that he will very soon have to be admitted back into the bone marrow transplant ward and so we have tried to explain to Ryan that his body is fighting mummy's new stem cells and that the bad news is that his body is winning.  We have told him the doctors will have a plan but that he will need to go back into isolation.  His first concern was would he need to have a wash every day? and his next was that he had better not have a small room like he did the first time!  
Anyway onwards and upwards! What other choice is there, sitting in a corner and crying isnt going to help Ryan one bit and wont do me any good either so after we heard this devastating news yesterday I went food shopping, just like I had planned to do before I found out.  It did take a little longer than usual as I kept forgetting what I was looking for but hey.
I promised to try and upload the video of him screaming all the way down the roller coaster and here it is for your enjoyment but best not have a cup of tea in your hand as you might spill it laughing!

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