Monday, July 27, 2009

William's 'Favourite Day Ever'!!

Well, it had to be something to do with Thomas...

When Wills was in Birmingham, recovering from transplant, he saw Thomas Land at Drayton Manor being advertised on TV. He asked over and over if he could go there when he was better and 'could mix again'. Today was the day. Grandma, William, Ellie and I went off to Thomas Land, leaving Hope and home with Grandad. In fact, Hope had an ideal teenage day - in PJs all day long and the day shared between the TV and Computer!! We had loads of fun in Thomas Land and Wills was a real daredevil - going on all the rides he was able to go on. I was a bit less care free as, due to his cerebral palsy, he has limited core strength and is a bit wobbly at the pelvis. While he was screaming with delight, I, or Mum, were holding him tightly to stop him falling. We had to draw the line at 'Trevor's driving school' as they were bumber cars in the shape of the tractor with no belt or way of holding him in and he would have to sit on his own. Cranky was also out as he would have to sit on his own and be dropped up and down at a great height! He went on everything else though. Maybe there is no fear left for fairground rides when you have been so poorly, had such huge operations, including a transplant and had so much to go through in recovery. I was almost relieved when he showed a little fear on the 'troublesome trucks rollercoaster'.
William declared the day his 'favourite day ever' and he was still singing Thomas songs in bed and studying his map of Thomas land at 10pm this evening! This was another day where I constantly felt so lucky we still have William and so thankful to his donor family.

Tuesday, July 21, 2009

School Holidays Day 2

I am not going to blog like this every day of the school holidays - I promise you!

But, today was also rather eventful:

  • For the first time in months, William's blood tests are a bit out, particularly his blood counts. He is fine in himself though so I am hoping it is an inaccuracy. Still, until they have been repeated and we know we have a little hint at something to be concerned about. We have had a good run with not a single worry so it is overdue really. Hopefully, it is all something and nothing. I am waiting to hear back from Birmingham.

  • I got my first proper professional photography booking :) The first of many I hope.

  • I was live on Radio 4 -You and Yours you can listen here I am on in the first 10 minutes, second caller. I started listening but had to switch off a few seconds after hearing myself but others say it came across well.

  • Ellie and I stumbled into what looked like a huge police arrest in The Whitgift Centre only to discover it was filming for The Bill, complete with all the big stars (most of whom we recognised from Eastenders rather than The Bill)

  • I got my long awaited for Canon 5D camera - afterall, if I am a pro, I had better have pro kit. Have played with it already and you can see the difference even when just playing. I had been saving up and then, when I was ready to jump, no-one had any and I promised myself the next one I saw would be mine. I went into Jessops today for a memory card and there it was...

  • I wrote an article highlighting the number of people who die waiting for transplants to send out to all those publications currently obsessed with mortality statistics.

  • Hope did not dye her hair as I am photographing the children as part of a magazine educational shoot with a pro tomorrow. However, she did buy it ready to do the next day.

All in all, a very productive day with lots more little signs that things are coming together and plans I am making are beginning to come into fruition. I need a master plan to tie them all together though. That is my next job.

Monday, July 20, 2009

School Holidays Day 1

  • William, who has been out of nappies for three months now (a pleasant surprise to us all as we didn't know if he had control or not) had so many 'accidents' I actually lost count.

  • Hope and Ellie went into town on their own to watch Harry Potter - and managed to loose each other on the way home.

  • Ellie and William chanted incessantly that they wanted their birthday presents today.

  • Getting up an hour later resulted in the feeling I was playing 'catch up' all day - so alarm set for 6.30 tomorrow.

  • Hope has now gone to the aid of a best friend who tried to dye her hair 'chocolate' and it is now 'ginger'. Hope plans to dye her own hair tomorrow!!

Please all you pandemic planners, do not keep the schools closed in September. Swine flu has got to be better than insanity!!


This is the first school holiday that we have been together for in three years!! Ellie and William will have their birthdays together next week. William has been in hospital for all but one if his so far. I am enjoying collapsing on the sofa with the remnants of the chaos all around me and reaching for a very full glass of red wine. This is the stress that every other Mum experiences and is much better than the stress I was under this time last year when we were in hospital awaiting transfer to Birmingham for an urgent transplant assessment.

Saturday, July 18, 2009

Increasing Efforts

There is a lot I want to blog about right now. There were three subjects fighting in my mind to be the subject of today's entry but, then, something happened that blew them all to the back of the queue to be blogged about later in the week.

The children and I spent today at the seaside today with a fantastic lady and her beautiful daughter, incorporating a Gifts of Life photo shoot. I checked in on Facebook and my emails while I was downloading the photos and there was some absolutely awesome news waiting for me to hear. Gabrysia is out of intensive care and recovering well from her heart transplant last week. There was an email from someone who has become a great friend and who I am really fond of with some really amazing personal news - you know who you are and YAY :) :)!!!! But the very best thing of all was that, there right on the top of my Facebook home page, was an update from the very special Jess saying that she had arrived at Harefield Hospital having been called for the double lung transplant she so desperately, desperately needs. I could not have been more pleased, excited and nervous that this was going to be THE call for Jess. This is a girl who knows the routine very well. She has been waiting for her transplant for four years now and has had seven false alarms. When I met Jess, three months ago, she had just had her last falsea alarm. She has been very unwell several times since then and has been very close to dying more than once. Jess has a lung capacity so low that the best breath out she can muster has less than the power of the fizz when you open a coke can! So, this HAD to be the call for Jess. Inbetween getting William ready for bed and sorted out, I kept checking Facebook for the latest news. I was totally gutted when, there it was, this was Jess's eighth false alarm!! The donor had deteriorated too fast so, despite being already brain dead and on the life support, no organs could be saved before the heart stopped beating. My thoughts and prayers are with this family tonight who did make that choice to save lives in their moment of tragedy and then lost even that chance to hold onto something positive in their day. My thoughts and prayers are with Jess and her family too. Jess will be the first to admit that her time is running out. She is 20 years old and it is unlikely that she could wait a further three months for another transplant call. Please join me in either praying or sending some very positive thoughts that she doesn't have to wait that long.

I made a promise to Jess today that I will work harder than ever before to make sure I do all I can to raise awareness and get her those new lungs. I know there are many others doing the same. So, I am now thinking of more ways 'Gifts of Life' more effective than ever and other things I can do to help people like Jess. I have to think quickly though, Jess doesn't have much time.

Wednesday, July 15, 2009

Swine Flu

One of the most fantastic things that has happened since William's transplant is that we don't have to worry constantly about the sudden life threatening episodes that were happening so frequently, and almost continually this time last year. We now have swine flu and most parents are concerned about the their children contracting the disease. Thankfully, for most children, swine flu results in 3 or 4 days, a week at most, being unwell before making a complete recovery. I am concerned for Hope and Ellie but really just that they will be feeling yukky for a while and it will be unpleasant for them. I don't have any concerns at all that anything more than that will happen if or when they get it. William is, of course, different in that he is a transplant recipient and is kept alive by a balance of drugs to supress his immune system to stop him rejecting his new bowel but not too much so as he is overcome by infection that his body has no ability to fight. This is explained to parents at great length at the time of transplant assessment and we are fully aware of the life long implications when we consent to the operation. This is why transplants are only offered when there is no alternative and the child will not survive much longer without one. William is amazingly healthy these days. I have had several colds lasting days, even weeks and he has had a sniffle of sore throat for less than a day, if anything at all. So, I hope that he will be able to overcome swine flu if her were to get it. Afterall, he has overcome a very severe pneumonia not long after his transplant when he was on a lot more immunosupression and was still very weak, nothing like his is now. Then, he was really ill and nearly in intensive care but bounced back in days, amazing the doctors. I am sure he will bounce back from swine flu too but you just never know do you. He is immunosupressed and, if he were very unwell, the level of his medications could be reduced to allow him to fight an infection, but then he may reject his bowel.

I was terrified about swine flu initially. I stocked up on face masks and tins of food and was ready to seal the children off from the world until it was over. Then, I chilled a bit and was not worried at all, until today. It seems William could well have been very closely exposed to it over the last few days and, once again, I feel a bit like we are haivng to keep a close watch and hope and pray he doesn't suddenly get sick and end up in hospital again. On the other hand, I could well have had swine flu myself last week and he is fine. At the very least, I had a really rotten cold and he didn't catch that so he is obviously pretty strong.

I'm not sure where I am going with this entry really. It is late night musing and venting to a large degree but I guess the main thing is we all want to be able to predict who will get swine flu, who will get very sick and who will die. The media is going crazy trying to predict these things and, in doing so, terrifying us poor parents, especially us who have more vulnerable children. It isn't helpful. I saw a poor official being grilled on BBC Breakfast this morning and he was doing his very best but he just doesn't know.

I am not going to closet William away. Life is for living and we don't know what is around the corner. We just have to make the best of the present moment. I was talking to someone today about a prayer my Grandma told me to adopt when I was a teenager. It is the serenity prayer:

'God grant me the serenity to accept the things I cannot change; courage to change the things I can and wisdom to know the difference...'

There is nothing I can do to take away the threat of swine flu so there is absolutely nothing to be gained from worrying about it and, as my Grandma would have said again 'dwelling on it'. So, instead of going to bed playing out all the possible scenarios I am going to go to bed with a good book and forget about it.

Having worked all that out for myself, I could delete this post but maybe I will leave it just in case it helps anyone else to try and stop worrying about it too.

Thursday, July 09, 2009

National Transplant Week

It is National Transplant Week this week - a week where people are urged to think about organ donation. I could blog on for ages about this but there is one main message really. Today, I woke up, cuddled, got ready and sent three very happy and healthy children to school. If it were not for William's wonderful donor and her family, one of those children would be missing from our lives.

The more I meet donor families and also meet people who lost a loved one but didn't donate organs and wish they did, the more it becomes clear that talking about organ donation is as important, if not more so than signing the register. Your loved ones need to know your feelings about it so that your wishes can be known if they have to make such a decision.

This week, think about it, talk about it and sign up here


Monday, July 06, 2009

A Lovely But Emotional Weekend

William's new special friend

And another special friend

The lovely Holly, making butterflies with Hope and William

And Ellie hard at work with hers

Planting the Memory Rose

Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.
We stayed with a lovely family and made some great new friends. We felt so relaxed with them and had lots of laughs and fun. The children were all up playing and watching DVDs until midnight on Friday, with William asleep on the sofa between them. The adults were sipping wine and chatting and the rest of our time with them followed on in the same way. It was hard to believe we had only just met. William was particularly taken with the family dog. He was somewhat worried at first and declared that he wanted to go home as soon but would not leave her by the end of breakfast time the next morning. The children haven't yet stopped talking about their new friends, the fun we had with them and their hope that it won't be the last time they see them.
The Donor Family Network meet was an emotional day. I felt very privledged to be there with all these wonderful people who have donated organs. I spent a lot of the morning with the children, settling them into their craft workshops but did find time to catch up with the lovely Holly and Oli. I also managed to catch part of a workshop led by recipient donor co-ordinators which I found really interesting. It was a fascinating, emotional, of course, insight into what happens on the other side of the gift on transplant day. We had a very nice lunch, during which we were asked by 'Aunty P' to speak about our experiences as transplant recipients as part of the next session, which was in the main hall and involved everyone. This was the first time I have spoken about William's transplant journey. I followed Holly reading a very beautiful poem and Oli speaking with great confidence about his own transplant. I was very nervous and emotional and nearly got overcome a couple of times. I didn't have anything prepared and was conscious not to say the same things as I was planning to in the address that I had prepared for the service the next day. I think I managed to get our story across in a sensitive way. It is especially hard to talk to donor families as you feel conscious that your story is happy where their's ended in tragedy. It was clear that these families really wanted to hear our storied though and drew strength and encouragement from them. This is the way of the transplant community. We are one big family that are always there for each other. We are so lucky to have each other. My transplant family grew a whole lot bigger over the weekend with new friends that we are looking foreward to meeting again at the transplant games in July. Some of the donor families will be there, cheering on the participants and awarding medals.
After the recipient talks, the really moving part of the day came with families being awarded certificates and angels to commemorate their loved ones. This was done against a back drop of a slide show of photos and accompanied by music. I doubt a single adult in the room had dry eyes. After the ceremony we planted a rose. The families wrote tributes to be planted in with compost with the rose. I wrote a short and simple thank-you to our donor. William was presented with his own angel to remember his donor by. It is now hanging over a frame of photos depicting his transplant journey.
In the evening, I had the opportunity to go out for a meal with Aunty P, Holly and the Donor Family Netork Trustees but opted to stay 'home' with the children and our host family. We had another lovely evening. The children played hide and seek and bounced on the trampoline and the adults chatted some more. We had an earlier night though as adults and children alike were tired after Friday.
On Sunday, we went to church with Aunty P and then met with Holly who treated us all to a greasy cafe brunch sandwich. Thanks Holly, my shout next time! It was then time for the 'Giving for Living' Thanksgiving Service. I was giving the address so pretty nervous. The service began with welcomes and then the wife of a donor lit the Paschal (Easter) candle. Holly, Holly's parents, Hope, Ellie, William and I lit seven candles from it to represent the seven main organs given for transplant (including the small bowel) and the main candle was extinguished to represent that the donor's life is over once the organs are given. It was very moving. The lady who lit the candle gave a really interesting and moving reflection on her experiences. She described being asked about organ donation as a glimmer of hope and light on the day she lost her husband. Nothing could be done for him but this was something positive that could come out of their tragedy. I gave my address and got through it OK after a small wobble at the start, where I thought I may have got overcome, but managed to hold on and recover. William's transplant consultant was there for the service which was lovely and meant a lot to me when I was giving my talk. He said afterwards that he likes to get to it to give thanks for those children he is able to save through transplant. The service was led by the chaplain who has a special responsibility for the liver until where William had his transplant so it really was lovely to be able to share this act of thanksgiving and remembrance with these two members of our transplant team. I won't describe my address on here but I will send a copy to anyone who would like to read it. Holly followed me with a very brave and moving account of her transplant story.
After a buffet and some long goodbyes to some very special people whom we had got to go over the weekend, we were on our way home. We will certainly get to that special service as often as we can do. It is an honour to be able join with donor families in the act of thanksgiving for their loved ones.