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Old 26 Jan 19, 09:54 AM  
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danisleigh
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Update on my sons transplant...mixed emotions

Last year I posted around this time as my son had been diagnosed with liver cancer aged 16 and placed on the transplant waiting list. In February he got his gift which was a split liver between my son and a baby girl from a deceased donor who had a brain tumour. We were informed how the chance of a brain tumour passing the blood/brain barrier was about 0.6% and therefore safe to use and as my son had a massive tumour on his liver we figured 0.6% was much better than the odds he faced by doing nothing.
He recovered well and so did the baby but by October she had some issues and was sadly diagnosed with cancer in her liver which had metastasised. Obviously we panicked and my son was scanned and found to be clear and they put it down to the baby being very unlucky.
This week we had the awful news that the cancer is donor derived and she has a brain cancer on her liver. She isn’t even 2 and is fighting someone else’s cancer. My son is at massive risk now and is being scanned this week and will be scanned every 3 months for life now until something happens...they say it isn’t guaranteed he will get it but the chances are massive. We have gone from feeling so happy and planning a celebration next month for the one year anniversary to feeling he is now carrying a time bomb around inside him. I also feel guilt that my son is ok and the baby isn’t, such a mix of emotions.
Luckily my son is very pragmatic and isn’t worried at all, he says the one thing you can guarantee in life is that we will all die and he just wants to concentrate on living so we are trying not to think of it as much as possible and live life to the full!
So I am going ahead with the cake and the celebration next month as we have to celebrate the decision of the donor and their selfless family, it must have been an awful decision for them and I can only imagine how they will feel when they hear the latest developments. This last year has seen my son start his driving lessons and have his first girlfriend and a lovely holiday to Lanzarote all which may not have happened without our amazing donor.
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Apr 98..Quality Inn, Dec 2004...hotel Cheyenne, may 2006...Emerald Island, Mar 2013..Regal Palms / AKL / Rosen Inn / HRH, Oct 14..Cypress Pointe, July 2016 Newport bay club, Aug 2016 magic med cruise, Aug 2017 SSR/Rosen pointe/HRH, Aug 19 Northern Europe Disney magic, Dec 2019...Sequoia Lodge, Xmas 2021 Rosen Plaza/HRH, May 2022 POFQ/HRH, May 2023 Disneyland LA.
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