Day Forty-Eight

1. Happy news at the start of the day

I talk a lot on this blog about the number of people who die waiting for transplant. Well, today, we celebrated the happiness when someone gets that wonderful call to say a donor has been found, someone has said yes to save and transform their life. Today, in the early hours of the morning, our friends Alana and her daughter Madiee got just that call. Madiee had only just a few days ago gone back to the active list after a period of suspension following a virus. I talk about this being a metaphoric journey for us but for Alana and Madiee this is a literal journey too, and a long one. They have travelled from New Zealand to Birmingham for Madiee’s transplant assessment, to wait here for the call, for the transplant and recovery and then for a period of around a year or two afterwards. Intestinal transplant is a tough old road but to travel that away from your family, friends and home is even harder. I was so pleased to hear the news this morning, not just because it means Madiee is on her road to a new and transformed life but because they have just taken one huge leap closer towards being home again. My thoughts have been very much with them, and with their brave donor family today.

It is a little bit tough though when someone close to you gets the call when you are waiting too. I’m not going to lie about that. It’s not that you wish it was you instead at all, well not for me anyway. I am always so so pleased for the family who's turn it is. It’s more that it feels that your call is further away than ever because it has just happened somewhere else and can’t happen so soon again. That’s how it feels to me but I also know that these things can come in clusters. When Wills was so so sick and living in hospital before his last transplant there was also another little girl who spent a lot of time with us there. She was also very sick and was also waiting for a bowel and also liver transplant. When she got her call we were all very excited but a few nurses acknowledged it must be hard for us. I remember writing on my blog at the time that I didn’t think Wills would get the call in time now because someone so close to us had just got a call and it couldn’t happen in the same place again. Wills got his just ten days later! Not only that, there was another little boy who got his call a week or so before her. There were the three of them recovering in adjacent cubicles this time six years ago. So, really, the chances stay the same whatever is happening elsewhere.

I have been thinking about Madiee and Alana all day, thinking about what would be happening and when and re-living our own transplant day. I’ve been thinking about our wonderful team too and the energy and care that would have been happening on the unit today. It’s been a trigger for me to remember how it felt, and how it will feel again. So much mixed emotion. Such happiness mixed with worry and fear and sadness for the donor and their family. I really hope Madiee has a settled night and Alana gets some rest to give them strength to carry them through. I also do hope that this is part of a cluster for our team and we join them there soon. We have spent a fair bit of time together in hospital at the start of the year and Alana and Madiee popped in to see us during our transplant assessment week. They are great people and we’ve had some fun together so I would love us to share more of this journey together.

2. Sad news later on

It’s been an emotional day today for another very sad reason. Today, for the first time ever, I had to take a pet to the vet to be put to sleep. William had a wonderful dog called Ollie. He is a beautiful golden retriever and we love him very very much. Sadly, we had to rehome him because of the risk to William’s line and infection as William has a room at the back of the house and there is no option other than for Ollie to come in through William’s room from the garden - not what you want in a room where you do TPN! Also, we have spent so much time in hospital and have a lot more to come and it was hard to keep looking after him. So, at the start of the year, Ollie went to live in the New Forest and is very happy there with an amazing family, a huge forest to run in and a girlfriend too by the looks of the pictures I’ve been seeing of him snuggled up together. It would be cruel to bring him back, to him and the family who have adopted him and it’s out of the question now.

William was given three rats by a friend who needed to rehome them and we have loved and played with them since the summer. They were already pretty old ladies though and sadly one dropped dead very suddenly on Tuesday. One of them had been looking a bit tottery for a few weeks now and I was surprised it wasn't that one who had died. Today, I was talking to the TPN delivery man who remarked that the rats were quieter than usual. I explained one had died but realised he was right, they were very still. So I picked up their little house and the healthy, oldest one came scampering out but the one I had been worried about didn’t move. I picked her up to absolutely no protest or movement away and thought she was holding her legs a bit oddly. When I put her on the floor she just fell on her side. It was horrible picking up a cold dead rat from the cage on Tuesday so I put this one in a little box with some hay and called the vet.  I ended up carrying her around with me all day, cuddling her, holding her and hand feeding her all her favourite food. I knew what was coming. At the end of the afternoon, Wills and I took her to the vet who confirmed my fears. She had had a stroke or something similar and all her legs were partially paralysed. She was also incontinent and probably feeling very dizzy. We kissed her goodbye and left her to be put to sleep. It was so sad.

This has led, of course, to deep conversations about death and about how strange it is that the oldest rat, who happens to be mum to the other two, although only a few months older, has outlived her daughters. Wills has been asking some searching questions and it has been hard. Small pets teach our children about life and death but Wills knows too much already. He even questioned the poor vet assistant taking our payment today about euthanasia and how it’s strange it is seen as cruel to keep an animal in the state Vitani was in today alive yet it’s murder if you help a human in a similar state to die. It was a deep conversation for a ten year old.

Of course, he is now also questioning again about his dog coming back home now he has lost two of his pet rats in just two days. With the remaining rat on very much borrowed time and now very lonely too, I think we’ll to look into finding some new friends to join the family.

3. A scene from the play 'Nothing to do But Pray.'

It’s Thanksgiving Day in the US and Wills and I have been thinking about everything we are grateful for and how it is all down to his wonderful donor. She has given him every moment we share and every breath he takes. She, and her family, are our heroes.

This is a scene in a play that I wrote a few months ago and am rehearsing for production early next year. In this scene, a mother is wondering whether to donate her daughter’s organs after a sudden brain death following an accident earlier in the day. The play is dedicated to William’s amazing donor.  It is a one act play taking place in the chapel of a busy London hospital during the 24 hours following an accident outside the hospital that will change the lives of many directly, and indirectly involved forever. This is a sneak peak at one of the scenes. If you'd like to read it all then do get in touch.


9.00 pm: Tanya

[Tanya walks in slowly, she is pale and drained in every way. She has some leaflets in her hand. She sits on the first chair she meets]

Tanya: She’s gone! Her body is there, the machines are keeping it working but my baby has gone. They took the machine out of her mouth and she did nothing. I willed her, ‘Come on Molly! You can breathe! I know you can’ I tried to give her all my strength but she did nothing. Two different doctors came and tried all those tests. She’s dead.

[She cries and then tries to speak again, panicking]

I don’t know what to do! What do I do now?

[She breaks down]

Molly.... my baby... I don’t understand what’s been happening today. This can’t be real. Nothing makes any sense.

[She cries quietly then tries to pull herself together and opens the leaflet]

They asked if I would consider donating her organs. I didn’t know what to say. Someone will come and talk to me in an hour. If I say yes, Molly will save lives tonight. I don’t want them to hurt her anymore. She’s my baby. I don’t want them to cut her. I don’t want them to take anything away. [cries again] She’s such a kind girl. [she laughs through her tears] Yesterday she was skipping around in her wings and ballet shoes. You wished you could be a real fairy and grant real wishes. You asked what my three wishes were. I could only think of two. Here you are Molly, here is my third wish. I wish that the clinic had been a little bit longer. I wish I had had one more question to ask. I wish we had stopped for some coffee and ice-cream on the way out. I wish I had done anything to make us later getting to that bus stop.

[pause]

[Tanya looks towards the light coming from the window]

Yellow and pink, your favourite colours.

[She walks towards the light shadows and stands in it so the colours flash on her skin. She sways and dances, being a fairy, connecting with her daughter.]

You wished to be a real fairy Molly. To make magic happen. That was the last thing you ever asked for. My third wish is to make that come true for you. You and me together Molly,  we’re making Mummy’s third wish come true.
And lots of other Mummies and children are making wishes tonight too and you, my little fairy, are going to fly around making them come true. Tomorrow, there will be people who are alive because of you. There has never been a fairy who worked more magic than that!

[Tanya lights a candle]

For you my beautiful girl. I love you so much. I’ll never stop loving you. I’m so proud of you. Be a brave girl now and I’ll try and be a brave girl too

[lights down]