Saturday, July 26, 2008
Wednesday, July 23, 2008
I have known of 2 children who died waiting for a small bowel/liver transplant. I have also heard of countless young adults dying whilst waiting for new lungs. We coudl find ourselves on the transplant list within a few weeks and, if so, I will do all I can to use our story to promote organ donation. This petition is mainly about bone marrow donation but will also include blood and organ donation.
I have just received this from a friend, having been out all day. It concerns a petition that is being delivered to Downing Street tomorrow as part of a campaign to include education on organ, bone marrow and blood donation in schools. Currently, only 20% of the population are on the organ donor register but over 80% think it is a good idea and would hope to get an organ if they needed one. There are over 7500 people waiting for organ transplants. Last year, 450 people died because an organ did not come their way in time. Obviously, 1000s more receive blood transfusions. A petition is being delivered to 10 Downing Street tomorrow. It's part of a campaign to get the government to make it an obligation of colleges to provide education on organ, bone and blood donation to students up to 18 years old: http:/petitions.pm.gov.uk/bone-marrow/ If they can get a few more signatures before midnight tonight (Wednesday 23rd July) it will register as the 6th best supported petition to the government. It's been started by a guy called Adrian Sudbury who you may have seen in the media a lot lately. Adrian has just had his 27th Birthday but has only weeks left to live because he has leukaemia. He has decided to spend what time he has left ensuring that he leaves behind a lasting legacy of education on bood, bone and organ donation for everyone before they leave school. He has met with the Prime Minister and key government officials and they are starting to look at ways to implement the scheme, You can follow Adrian's blog here: http://baldyblog.freshblogs.co.uk/ He's an amazing guy and it will make a huge difference to have every extra signature on the petition. Thanks!
For more info on transplants and joining the organ donor registry please see http://www.livelifethengivelife.co.uk/
Tuesday, July 22, 2008
Sunday, July 20, 2008
Yes, you heard right. Thomas the Duck, not the engine. That is what William chose to call his new duck. He has been playing with it with Hope and Ellie all day. Thomas has had TPN and drugs with William and has been everywhere with him today. The surgery to form an illeostomy and insert a gastrostomy went very well, thanks to red felt and Velcro, and Thomas was well enough to join William in bed before morning. We popped to the Build a Bear factory this afternoon as Ellie wanted to spend some pocket money on bits and bobs for her bear. There we found a ruck sack so Thomas can have his TPN in a ruck sack just like William's and a little bag of medical things, including the dreaded blood pressure cuff. William really hates this and calls it 'arm of squidge'. We even found a Thomas sized wheelchair so Thomas can sling his TPN ruck sack over the chair like William does.
*Update to this blog - As he was playing with his duck at bedtime, William decided that Thomas was not a good name for a duck afterall and renamed him 'Manny'. Manny does go better with the names of his other favourite cuddly toy - Nester. Manny is currently sitting watching William play with Thomas the tank engine.
So far, it is a 'nothing right day' and Wills is in a very funny mood. His stoma output is pouring. We are just a week and a day from Ellie's birthday and a week and two days from William's and hoping every hour that Wills stays well enough to be home for them. It looked certain he would be in recovering from his gall bladder removal but Birmingham want to assess him for transplant first. This means, we will be home until mid August as long as William stays well!!! *
Manny the duck is going to be a very special friend for William. Huge thanks to Post Pals and even bigger thanks to the family and friends of a special little boy called Nathan. Nathan sadly died of cancer and the Chemo Ducks were donated to Post Pals in his memory. There is more about Post Pals in yesterday's blog.
Saturday, July 19, 2008
The party was to celebrate 5 years of 'Post Pals'.
Post Pals is a fantastic organisation existing to help put smiles on the faces of children whose lives are dominated by treatments in hospital and in the home and for their siblings. All the children are called 'pals' and their stories are featured on the Postpals website http://www.postpals.co.uk/. People can then read about them and send them 'smiles' through the post through letters, cards and gifts to help cheer them up when they are going through the mill. It is a lovely idea. We have only just got involved with Postpals. William is not yet a 'pal' but will be soon. The site is full of children whose difficult lives are brightened up by receiving their smiles. I know that William, Hope and Ellie will feel the same.
As you can see, Postpals have already put big smiles on their faces (Hope and Ellie were also smiling and laughing but not captured on the camera - William hardly stopped smiling!). We were invited to the party a couple of weeks ago but I only told William yesterday in case he wasn't well enough. He was so excited and kept talking about it. He loved every minute, especially the ventriloquist/puppetier. The puppets were performing bursery rhymes and often got them wrong - MUCH to William's amusement. I have never seen him so involved in an enertainer. His giggles were very infectious. He also shouted down the microphone to help a koala who had forgotten the words to his nursery rhymes. We had a fantastic barbeque and William enjoyed smelling sausage rolls, cheese straws and sweets. Thank-you so much to everyone involved in such a fab afternoon.
The children were given balloons and a party bag and William was given a 'chemo duck'. This is a lovely cuddly duck in pyjamas and with a Hickman Line and IV splint. They are designed for children with cancer but William uses the same lines. He has already called his duck 'Thomas' - which goes to show how important it is to him as NOTHING has ever been named after his precious engine before. Thomas had IV drugs and TPN with William at bedtime and I have been instructed to make an illeostomy and put a stoma bag on. Thomas is about to undergo surgery when I have finished this blog. I will post a photo of him when he has recovered tomorrow.
There was a display of photos of all the Postpals at the party. I am fast learning how small the world is becoming in the internet age. I recognised many faces from other sites and message boards. It is so fantastic to be able to keep in touch with people who are in similar situations. It makes life a lot less lonely. It is great to hear from new people commenting on my blog. I love reading comments on here. It helps keep me going and I am going to spend some time over the weekend reading blogs of people who have got in touch with me here. This network is so special to people who are stuck in at home a lot of the time through their own poor health or because they are looking after others. I am so glad to have found the transplant kids forum as well. Although there are some very sad stories, on the whole, it seems a very positive place to hang out and I am looking forward to getting to know people on there. A few words of encouragement now and then are so important. It is so important to give and receive support. I am going to look out for opportunities to send some smiles to other Postpal families when they are going through tricky times. Please have a look at the site - maybe you could help spread some smiles too.
Post pals - http://www.postpals.co.uk/
Thursday, July 17, 2008
From now on, they will always be in Stoke-on-Trent while we are in hospital. Ellie has dual school registration. We are still working out what is best for Hope as being thrown into a large comprehensive school while your brother is sick and everyone is worried would be the last thing she needs. With the transplant assessment in August, next term is unlikely to be anything like settled. I worry about the impact things have on their education. I am lucky that they are such bright girls and work hard when to keep up when they do have to be out of school. At least we will have a more structured se of contingency plans next year. If William goes on the transplant list we will all have to be ready to drop everything and uproot for 3 months. Hope has a fantastic group of friends who have stuck by her and supported her throughout the year. Ellie just makes friends wherever she goes. We are very very lucky.
Tuesday, July 15, 2008
Things are very raw at the moment with the transplant assessment getting ever closer and following Friday's clinic. The weekend excitement has not passed enough for me to think about what was said and what, unfortunately, Ellie overheard. William's doctor explained that she thinks we will eventually 'loose the fight' with things the way they are as William has very limited venous access for the Hickman Line that delivers his TPN. He also has infections far too often and is now getting liver problems, such as his gall stones, an enlarged spleen and some evidence of damage to the blood vessels around the liver. The liver aspects (apart from the gall stones) are all very minor and totally reversible at the moment but shows his body is struggling with TPN. This is why we have reached the time where an urgent transplant assessment is necessary. William was referred to the transplant team in May and we were all expecting his assessment to take place within weeks. We had thought that the Birmingham team did not agree he was quite so urgent but have since learned that, sadly, all the children referred for transplant over the last few months have been urgent cases. Everyone is disappointed that they can't all be assessed as quickly as usual. However, we are expecting William to be assessed in the middle of August and he is unlikely to be bumped down now as he has some acute problems that need addressing after his assessment. We have been warned that the small bowel transplants are not as successful as 'solid organs' such as heart, lungs, kidneys, liver etc. This is very difficult because you feel stuck between a rock and a hardplate. If we go for transplant we could loose him and his life expectancy is not that encouraging. If we don't we could loose him and his life expectancy is even less encouraging. Either way, if the outcomes are not good we will feel we made the wrong choice. We both know the transplant offers the best hope and, by far, the best expected quality of life and are hoping more than anything that William will be accepted and listed.
Earlier today, I managed to prize Ellie off the various Lee Mead appreciation websites and You-tube vidoes of 'Any Dream Will Do' long enough to look at some stories of other children who have had bowel (and liver in these cases) transplants. I am so glad I did. Many people reading this blog are family and close friends so you will all be as encouraged as we are. Have a look at this http://www.transplantkids.co.uk/stories.html - Aaron and James are the bowel/liver children. Aaron had his transplant at 3 years old and is now an 11 year old snow boarder, mountain biker and footballer, as well as transplant games medalist. James also had the transplant at 3 years old, was eating 2 weeks later and went home 5 weeks after the transplant. Of course, it isn't easy all the time and both boys have had their ups and downs. I so want to be able to post pictures of William eating on here. Both of these boys had their transplants around 3 to 4 months after being listed. Wouldn't it be something to have a picture of William nibbling at Christmas dinner. We have heard other stories and, Jo, if you still read the blog, my thoughts are with you and the family tonight. However, myself, Paul and the girls have all read these stories today and feel so positive about them. William is amazing. He is such a little star and everyone who meets him is touched by them. When he sings that Joseph prologue, I know that he has already made more of an impact than many people do in a lot more years on this planet. Since having William, that song always brings tears to my eyes and, although I never give up hope, I never let myself dream too far into his future. Seeing Aaron at 11 years old is incredible. I hope we will be posting pictures of William at that age. It almost feels safe enough to wonder for a while what he may be into when he is that age. Mind you, having only experienced girls growing up I actually don't have much of an idea. Perhaps, for now, it is just as well.
Monday, July 14, 2008
Shortly after the teachers left, we had a very special delivery - William's long awaited electric wheelchair. He has been in hospital every time we were due to collect it and, when we finally managed to get there, one of the functions was not working. Thankfully, it can be driven from the back so I can keep control while he is learning. This didn't stop him managing to switch it off while we were half-way into getting off a tram to pick Ellie up from school. It took 6 people lifting and pulling frantically to get him into safety before someone noticed what he had done! He hasn't found the horn button yet but I'm sure it won't be long! I can see we are going to have fun and games getting to grips with it. I think we will stick to the buggy whenever we need to rush anywhere. It will be great in the classroom though as it will give him independence while he is stuck on his TPN. For now, we are sticking to safe places, like Ellies school playground, before letting him take control of the joystick.
William also had bloods today. Thanksfully his liver tests have stabilised and even improved a tiny bit. This is good news as the transplant team in Birmingham want to assess him before making plans to remove the gall bladder. It still needs to come out but they want to decide how to do things in the context of decisions made about transplant. The more surgery a child has prior to the transplant, the more complicated things can be so it may be that the gall bladder and liver situation is assessed as part of the whole of his condition and incorporated into the speed at which he needs the transplant and where he is placed if listed. If it is likely that he will get a transplant relatively quickly, we may be able to wait until then before the gall bladder is removed. If they do feel the gall bladder operation needs doing more quickly, they may well do it themselves. Everything now rests on the assessment, set to take place in a few weeks time. We have been told that we need to bring him into Chelsea and Westminster if he seems to be in a lot of pain or gets fevers. Apparently, he could get a sudden and serious infection due in the gall bladder or the blockage in his bile duct could suddenly worsen. As ever, we have the risk of sudden line infections and another risk of him becoming suddenly and severely unwell along side it. It is so hard to get the balance right at the moment. Hospital bags are packed and contingency plans in place. He is having his ups and downs at the moment but is OK. I just hope we can hang on in at home for another couple of weeks so Ellie and William get their birthdays at home and all together. Hope is worrying about us going into hospital. Ellie is blissfully protected in her bubble of lovely memories and lingering excitement from Friday. I just it doesn't pop too suddenly. She would go down with a bump.
Sunday, July 13, 2008
Ellie hasn't come back to earth yet! She is still very excited and really happy. If you didn't read yesterday's blog about our fantastic evening at 'Joseph' then do scroll down. You will see why Ellie has been floating about in space all weekend. It has been a lovely weekend and so nice to be posting such happy photos of the children.
I wanted to start the blog today with the three of them together. You can really see how much they have enjoyed the past few days. Ellie was so upset on Friday to hear what is coming up for William, and for all of us, over the summer. She is like a different child this evening, all three of them are. For Ellie, it was her wonderful evening that pulled her up. All three of them have benefitted from a weekend at CHASE at Christopher's Hospice. Ellie wrote about CHASE in the card she wrote to Lee Mead when we went to Joseph. It was interesting because she gave a great insight into what she gets from being there. She said in it 'You can do whatever you want to there'. Hope agreed that being able to do what you want is something really great about being at the hospice. They feel relaxed and free there because there is so much to do, a lot of space, a relaxed environment and someone else is taking responsibility for William's care. This weekend was the first time I have not been there with them all the time. William went on his own and was met there by Granny who stayed with him there for the weekend. Hope and went on after the sibling day on Saturday. I went this morning to join them for lunch and take them home. It was really interesting to see what they were up to as they were 'doing what ever you want to'. Ellie, as ever, had made new friends. She makes friends wherever she goes. They were raiding the fancy dress cupboard and playing 'let's pretend' games with dolls. Hope was playing with the keyboard. The keys light up to guide you as you play pieces. Hope loves it and always makes a beeline for it. That and the computer room and 'den' for older children. William, of course, had every Thomas the Tank Engine toy and book all around him. I was assured that he had been in the soft play and sensory rooms and had not spent all weekend watching Thomas DVDs. I was given some fantastic photos of him on a fire engine with the fire brigade who dropped in to see them on Friday evening. He has had a great time. It was so lovely to see them all having the time and space to be children and play, away from all the responsibilities and worries we are all living with at the moment. CHASE provide respite for families like ours. We often think of that word in terms of doing all the practical things for William and cooking us lovely meals so we can just relax. It is so much more than that.
Both girls enjoyed the sibling day. Ellie was reunited with one of her best friends at CHASE and someone she hasn't seen in a while as William has been in hospital for the last 3 sibling days. Hope also made some friends with whom she has agreed to keep in touch and keep each other updated on what is going on in their lives so they can support each other. I only spent a few hours at the hospice this time but that even that was enough to feel relaxed and to have the opportunity to chat about what has been happening with Wills lately and chew over some of the huge decisions that have to be made over the next few weeks. CHASE really are our lifeline.
Our other lifeline, of course, is Chelsea and Westminster Hospital who have kept Wills alive for the past 2 and half years. Regular readers of my blog will know that we affectionally call the hospital our 'Chelsea Pad'. We spend more than half our life there so need to think of it as a second home. Yesterday evening, Paul and I went to a ball to support the surgical team in raising 1.5 million pounds to refurbish a brand new state of the art paediatric operating theatre. The Trust have promised to fund the building and the staffing but fundraising is underway for the equipment. They are hoping to raise enought for a surgeon controlled robotic instrument. This will make our Chelsea Pad only the second hospital to provide this for children, confirming its status as the leading centre for children's surgery in the South of England. Chelsea and Westminster are a key centre of excellence for 'intestinal failure' and intestinal surgery, among other surgical specialities. There were some videos of surgical success stories and about the robotic machinery too. I felt really proud of our team. Everyone was there too. Most of the paediatric staff and nearly all the gastro and surgical teams. It was a somewhat surreal situation to be in - at a ball with all our team in their glad rags. It was a bit like stepping into one of those 'Holby City' episodes when they are holding a charity event, but with our own, real life team. I will do all I can to support them. Please do have a look at the site at http://www.surgery4children.co.uk/
William is featured on the site 'about us' page (with Mummy too looking at her hospital best) He has had several trips to the operating theatre and, of course, another one is coming up very soon to remove his gall bladder. Although, transplant aside, his condition can not be cured by surgery, many of these procedures have been life saving.
The main reason Paul and I were at the ball is because Paul was singing with some of his opera friends. He was actually really nervous. Everyone on the ward knows that Paul is an opera singer and always say 'go on, give us a tune' etc. Other than a few carols with some other friends at Christmas, no-one has heard him really go for it in a big aria - until yesterday!! He went down really well and everyone was really impressed.
Friday, July 11, 2008
We waved William off to CHASE with his nurse, waited for Hope to get home from school and set off to the theatre. We got there a lot earlier than I had planned but I am so glad we hung around! We picked up the tickets first and got our first lovely surprise. With the tickets were three programmes, personally signed by Lee for Hope, Ellie and William. The girls were so happy and, as ever, very pleased to see one for William too.
Ellie so wanted to catch a glimpse of Lee and give him the card and letter she had made for him. It was very early but we decided to go to the Stage Door where I was hoping to have a quick chat with someone and ask if they could ask him to say hello to her as he entered or make sure he got her letter. I explained the situation to a girl on the door who said she would try and talk to someone when they arrived but that it would be a while everyone would turn up. Just as she was saying that she said 'Oh, speak of the devil' and there was Lee!
Ellie got her moment, gave him her card personally and we took some lovely pictures. I gave Lee a very brief version of Ellie's story and why she loves his music and asked him to read her letter. Ellie was beside herself and kept on hugging me and giggling all night. I haven't seen her so happy in such a long time. Hope was very happy for Ellie but she is not so 'star struck'. Over tea, she told me that she thinks everyone is the same, just some people choose to be actors or pop singers - 'People like Lee are very talented and I really love to watch them do what they do but it doesn't mean they are anything special when they are just shopping or out with their mates really does it!' An unusual opinion in someone her age and very healthy too I think. Hope's highlight came later when she got to see backstage. She asked loads of questions about how things work and how practical challenges are met. She was fascinated by the how the back drop and curtain changes work, how actors deal with fast costume changes, the revolving stage and what measures are taken to make sure Joseph is safe when he is elevated.
We were invited backstage by one of the guys we were talking when Lee turned up. After Lee went in, he carried on talking to us and wanted to help make our evening special. Having met Lee so early, we were able to have a long and relaxing meal at TGI Fridays. Hope and I waved at Ellie up on the ceiling and threw her up the odd forkful of food and spoon of ice-cream! Ellie kept on grabbing us and hugging us with excitement.
The show was fantastic. The seats we had were perfect, near the front of the stalls and right in the middle. The whole cast are amazing. Both girls were really happy and excited throughout. I sat between them and it was so nice to be able to cuddle up together and enjoy an evening away from all the stress. None the less, I was relieved to get a text from the hospice to say that all was well with William. Ellie kept on saying over and over again 'I met Lee Mead!' 'I can't believe I met Lee Mead!!' We danced, sung and clapped our way through the 'mega mix' and had loads of fun together. There were a couple next to Ellie who were celebrating their 10th wedding anniversary and had left their own children at home. The poor things had an over excited Ellie chatting to them throughout the interval so they didn't quite get the child-free break they had hoped for. They did say they enjoyed Ellie's company - I hope so!
We then waited in our seats for the guy who had promised to take us back stage. It was fascinating to see everything. We saw how everthing worked, sat on the golden chariot and saw all the props and the animals. We were shown all Lee's costumes and all tried on THE coat. It is really hot and heavy. I am so impressed with how he bounds around the stage so energetically in it. On the way home, Hope and Ellie sung '
"We wore the coat, with golden lining, bright colours shining..."
"So Hope, Ellie and Mummy went backstage
No longer feeling cold
And Chris said we could sit in Joseph's chariot of Gold - Of Gold!
We wore your coloured coat, your amazing coloured coat!"
Ellie declared that her dress will never be washed again because Lee hugged her in it and she wore his coat in it.
It was a fantastic evening and we are all so grateful for CHASE for arranging it, the 'Really Useful Company' for donating our fantastic tickets, Lee for giving Ellie a few moments of his precious time and to Chris for showing us around the stage. Yesterday, I said I wanted to give the girls a really special evening to remember forever. All of these people made that happen. I know there are going to be more blogs about surgery and hospitals over the next few weeks. We will all be looking back at this one to cheer us up and I know the girls have a fantastic memory of a very special 'Mummy Day'. That is what was the most important thing about today for all of us. A special time together away from the stress and upset and a time where Hope and Ellie had Mummy all to themselves. This is why Ellie loves Joseph and Lee Mead's music so much. From the moment we decided that watching 'Any Dream Will Do' was our girly time with a rule of no non-urgent medical stuff, Ellie had those special memories of Mummy time. Her CD give her the same feeling when she is away and when William is ill. She now has a very special memory to think of to go with all that. Unfortunately, things have become more unsettled and complicated with William over the last year and the 'ring fenced' girly time got somewhat more ad hoc. We all agreed we need to find it again and have more special days out together too. They enjoyed and appreciated even little things, like going on a tube - impossible with William unless you know in advance there are lifts at all stations. For now though, there are two very tired and very very happy little girls tucked up in bed right now and that makes for a happy Mummy too.
Thursday, July 10, 2008
William is packed and ready to go to the hospice with his lovely CHASE nurse tomorrow. Granny is staying there with him so the girls and I can enjoy tomorrow and the girls are going on after the sibling day on Saturday so Paul and I can enjoy the ball. It is the first time we have had him there so we can all do our own thing a bit and I'm sure it will do us all good. I will miss him heaps on Saturday but will be there Sunday morning.
The only question is - will it all happen???
We had a liver ultrasound today and it showed that William has gall stones, caused by the huge amounts of bile he produces crystallising. William's intestines don't move properly so it can sit around a while. That would be bad enough and perhaps something to sort out in the near future. However, William's bilirubin levels are increasing in each weekly set of bloods. He is now a little yellow and doesn't seem all that well (although not in the way that makes us rush to hospital in fear of a life threatening line infection). He is having intermittent pain and his urine has been very dark for a few weeks. This suggests that one of the stones has blocked a bile duct, a much more urgent situation.
We have clinic tomorrow and I wonder if we will be coming home or staying in! I hope we can go home and come back in next week. If the worse comes to the worse though we will still see Joseph and go to the ball as both are in London and pretty close by the hospital. One thing is for certain, with this and the transplant assessment coming up, we are going to have another hospital dominated summer! All the more reason to do my very best to make sure the girls have a really fab evening tomorrow - even if it means a fruitless wait outside a stage door in the rain!!! Remember a similar situation Mum? Nik Kershaw on a dark, wet and foggy evening!!! I wasn't lucky enough to get a glimpse or an autograph at that stage door vigil but did get a personal one, thanks to a next door neighbour, a few weeks later. I will remember that if we are unlucky tomorrow and tell Ellie that she may get lucky another time.
Tuesday, July 08, 2008
I have a great weekend coming up so hope to put all this behind me. Via the hospice, The Really Company' have donated tickets for Hope, Ellie and me to see Joseph on Friday. We have stall tickets so will be close to the action. The hospice were hoping to get us in to meet Lee Mead but his management are saying he is too overwhelmed with requests. I am a bit disapointed for them. Ellie loves Lee. We watched 'Any Dream Will Do' together and made sure William's treatment was over in time for us to sit down and have some girlie time together. When William was in hospital, we would phone each other afterwards and discuss how everyone was doing. Ellie associates this with me and listens to Joseph and Lee's album when we are apart when Wills is in hospital. She has them on to sleep and whenever she is missing me. It would have made her little life so far to meet him He does come out of the theatre at the end of the show but there are crowds there then. However, being the determined little thing I am, I have emailed his agent to ask if he could say a special hello to them when he comes out. I have also emailed Denise Van Outen, via Capital Radio. Of course, she will probably not even get the mail as I am sure her producer gets mail addressed to her but you never know, if she gets it, perhaps she can use her girlfriend charm to ask Lee to say hello to Hope and Ellie when he pops his head out of the theatre at the end of the show. Just a simple 'Ah, you must be Hope and Ellie. I heard you were coming, did you enjoy the show' would be enough to make them very very happy! The girl from the hospice said it is easier to arrange 'meet and greets' for the sick children themselves but siblings need and deserve these special treats just as much - if not more! In any case, we will have a special night.
Wills is at the hospice for the weekend with Granny. Hope and Ellie have a sibling day on Saturday and then will be off the hospice too leaving me free to go to a ball It is a Paul for Chelsea and Westminster paediatric surgery. We need an extra theatre. Paul is singing at it. We haven't been out together since I had Wills - nearly 4 years ago!! I am looking forward to that very very much.