It has been an emotional few days. On Saturday, I received the very sad news what a friend of ours died suddenly of complications with chemotherapy for bowel cancer. We all knew his prognosis was not good from the onset but no-one expected him to die so suddenly so soon. He had a very special bond with William as they both had their stomas and a lot more in common than William would have understood. William heard me telling Hope and Ellie and knew exactly who I was talking about. His immediate response was "Who will I watch the football with now?" (the Kick London footballl coaching we are involved with together) followed by a pause, then "I will miss him!" I was surprised how much he seemed to understand. We are all so so sad and will all miss him. He leaves behing a wonderful family who are in our prayers.
William is muddling along but his bloods are not too good. He also keeps spiking temperatures so the difficult decision has been taken to remove his new hickman line on Friday and put in yet another on Tuesday. He can't carry on having so many infections and the team are not at all happy about things. They are looking into some options to try and stop his gut leaking so much. I am hopeful but these treatments are all expensive and experimental and they have to put a case to the Health Care Trust to get permission and funding to try them. They will not cure him but should help him get to transplant.
We have had some good news today. The other child here waiting for an urgent liver and bowel transplant got her call today! She was discharged from hospital here and got called 15 minutes after getting home. I am very very pleased for them as they have waited 8 months. I would be lying if I said there wasn't a bit of me feeling desperately dissapointed that today's call was not for William. I always wanted this little girl to be called first as she has been waiting so long. It is a strange feeling to be so pleased for someone but feeling a bit flat about it at the same time. As news has travelled, everyone has first expressed their excitement and then how they hope William's call comes soon. I kind of think it is unlikely as children's transplants do not happen all that often and one is going on now. Of course, we don't usually know when they are doing transplants and so can't think like that on any other given day. They did 2 transplants in the week we were there for assessment so it doesn't necessarily follow that there can't be more than one in a relatively short time either. Someone once posted in a forum that they always took peace by thinking that their time will come when it is right for them. It was right for this child today. She was home from hospital as well as she gets. The right time for William will come too one day.
3 comments:
If you flick back through some of my blog entries when I was waiting, I talked about this terrible dichotomy; your relief for the other person and your envy and disappointment at the fact it's not you.
I think it's a natural human feeling and one you should feel as well; it's a sign of survival instinct, of fight and of desire to move forward and get to this next step, and this is the drive that will get you there and keep you going.
You know sometimes Transplants are like buses....let's hope this is one of those times :)
xxx
Hiya Sarah,
I just wanted to let you know that you and William are always in my thoughts and prayers. I remember feeling exactly the same emotions as you describe and it is hard to get your head round, but as Em says, it's a natural human feeling.
Sending you lots of love always.
xxx
Hi Sarah
I felt the relief/envy feeling many times whilst watching fellow dialysis patients get their new kidneys whilst I was still waiting. It was then followed by a terrible guilt feeling that I could ever feel like that. But as Emily says I think it is completely natural. I'm sure William's transplant is just around the corner....good things come to those who wait :)
Big hugs for William.
xxx
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