Tuesday, 21 October 2014

Day Eleven

1. A Part of Me

I give to you my heart
Please, handle it with care
It never got the chance to break
Though had much love to share

To you, I give my lungs
Air streamed deeply, never a wheeze
Now you’ll be able to run and jump and sing
Breathing at last with ease

I’m giving you my liver
I liked my coke flavoured with rum
So I know it is a good one
But please don’t tell my mum!

I give both of you a kidney
They kept me going strong
In miles and miles of training
and gold in the half marathon

To you, I give intestines
So at last you’ll be able to eat
I bet you can’t wait to savour
Vanilla was my favourite treat

I’m giving to you my pancreas
I had a very sweet tooth
and was pushing it right to the limit I think
Be thankful it’s still in it’s youth

I’m giving you all something precious
Things I’ve had all my life, parts of me
So now, I’ll always be part of you
In every new moment you see

I don't normally write in rhyme but, when I do, the poems flow from the pen quickly. They tend to be quite light poems, not very deep. Like everything on here, that poem needs a bit of work but it is a special one to me.

2. In The Tail Of Hurricane Gonzalo 

Leaves flitter and glide
Glinting gold against ashen grey storm clouds
Stars shooting from the sunny side of the street
Is it wrong to wish on dead matter?

Something I wrote when I was looking out of my window this morning.

3. Be careful what you wish for!

In April, shortly after Wills and I had come out of our long hospital stay and were trying to catch up with what 2014 had bought for the rest of the world, we went to a celebration of 25 years of our amazing liver unit at Birmingham Children’s Hospital and 20 years of intestinal transplants within the unit. It was a wonderful celebration of the most awesome team of people you could ever meet. We arrived the evening before and spent some time chatting in the hotel bar with other intestinal transplant families. I noticed, as I have done before, that the strapping big, healthy teenagers, some of whom had their transplants as infants, seemed to be mostly combined liver and bowel transplant recipients, while most of the the children I know who have struggled since their transplant, at least with rejection, malabsorption and other bowel function related issues, seem to be isolated bowel recipients.

When we were told that it was time to think about re-transplant a few weeks later, I asked if  there was any truth in my observation and if we could think about a combined transplant for William this time if there was any substance at all to my theory. I was told that I was right, there did seem to be a bit of a pattern, in some cases at least, to suggest combined transplant recipients did better in the long term, but only after a much more challenging initial couple of years that isolated transplant recipients and you have to get through those first. And, although most do, we have lost some beautiful angels along the way. The consultant told me that it was only of there were specific antibodies that a liver would help. I didn’t completely hear or understand what she said but said to myself, ‘then I hope Wills has those antibodies!’

At that time, I didn’t realise that liver and bowel combined re-transplants had not yet been successful within our team and so within the UK (Kings, London now do intestinal transplants but, until 2008, it was only Birmingham). I didn’t fully understand the added risk of double transplants. I just saw a group of children struggling and big, healthy looking teenagers, some at 18 on the verge of adulthood. In my mind, if Wills was going to go through all of this again I wanted it to last as long as possible, even if that meant accepting some additional risk initially.

At the British Transplant Games in August, in fact in the days directly leading up to our admission for re-transplant assessment, I spoke about it with some of the other mums, one of whom has a strapping, healthy looking teenager who had an isolated bowel which reassured me.

And then we got to the assessment and we talked things through….and I felt relieved that Wills was only needing an isolated bowel re-transplant. And then, right at the end of the week, some blood results came back… and William had the donor specific antibodies! When we were talking about liver and bowel re-transplants and our wonderful specialist nurse was explaining it, she said; “We will have a first liver and bowel re-transplant! It will happen!” I hear her say that almost every day. It has almost become a mantra. At first, a part of me felt I had ‘tempted fate’ by wishing it on Wills but now I prefer to think that, if I did put it out there, if I did ask the universe for him to have a combined transplant because of my hunch and my observations, then it was because that will be the case for him. His beautiful first donor gave him an organ that kept him alive when we were so, so close to losing him. Her gift say him grow from a small child into the funny, quirky, intelligent and sensitive young lad he is now. His new donor will give gifts that will see this lad grow up into a young man.

It’s true, you do have to be careful what you wish for, what you ask the universe for but I believe…and I really do believe, that this time, the wish will come true.

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