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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 isnít even 2 and is fighting someone elseís 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 isnít 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 isnít, such a mix of emotions.
Luckily my son is very pragmatic and isnít 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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Old 26 Jan 19, 09:58 AM  
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greekgranny
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This is when you need a "hugs" emoji, words cannot express what you want to say.
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Old 26 Jan 19, 09:59 AM  
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nadya
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Oh my god,I don't know what to say.What a whirlwind of emotions for you all to go through.How I admire your sons attitude though,what an amazing boy you have!.I hope you can all celebrate the transplant success for many years to come.
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Old 26 Jan 19, 10:00 AM  
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Bazinga 39
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What a roller coaster of imotions you must of been through, your son sounds like an amazing young man to be coping so well, what an awful thing to cope with for the little girls family and the donor family, my heart goes out to you all x x
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Old 26 Jan 19, 10:05 AM  
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soooexcited!
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There really are no words. What a total rollercoaster of a year you've had. Your son sounds like a truly inspirational young man. I can't begin to imagine what you are all going through.xxx
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Old 26 Jan 19, 10:05 AM  
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macdonald
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Sending my prayers and good wishes Xx
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Old 26 Jan 19, 10:06 AM  
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Dayle
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I canít begin to imagine all the emotions you must be going through but what an amazing attitude your son has to this. You must feel so proud of him.
Enjoy your celebrations as you said your son has achieved so much in the past year that at one point you may only dreamed of for him and some familyís selfless decision has made this possible Thoughts going out to your family and all the other ones involved.
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Old 26 Jan 19, 10:06 AM  
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Rac20
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Your son sounds like a most remarkable and courageous young man. You must be very proud of him. What a time you have been through and continue to go through. Sending pixie dust to you all. Xx
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Old 26 Jan 19, 10:10 AM  
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FamilyGWales
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So sorry to hear this, both for the little girl, but also for the uncertainty your son now faces.
He sounds an amazing young man. You must be very proud.

I think it is a lovely idea to remember the donor and their family in the way you propose.

Difficult decision for them, and it sounds like a challenging one for you at the point of transplant. Don't second guess yourself, the decision you made was the right one. 0.6% was a lot lower risk than what you were facing originally.

Best wishes to you all.

Edited at 10:46 AM.
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Old 26 Jan 19, 10:11 AM  
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Twin mummy
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Your son is amazing in so many ways and so are you. My heart goes out to you, the little girl and her family and the donor's family too. xx
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