Sunday, July 13, 2008

Still on Cloud Nine

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
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.

John Hannah was also there. He has a child who has been in the hospital a few times. I have seen him before, in the playroom. I didn't talk to him yesterday as everyone knew him and it seemed most uncool to go up to him and say hello. Hugh Grant was meant to be there too but tied up. I won't repeat here John Hannah's after dinner jokes about what that might be. OK magazine were there taking snaps. I certainly did not look glamorous enough to be featured but Paul should get in with a performance shot. It will be funny to see all the docs and nurses in there. They all looked really great. It was really nice to be there and support them but I am still not sure how I feel about watching people get drunk on the dance floor who, the next time you see them will be operating on your child or having to deliver those heavy 'we are reaching the end of the road, it is time to consider transplant' type conversations. It's just all a bit surreal. Perhaps it is a good thing we left not too long after the dancing was really getting going.
The picture at the start of the blog was taken at the Croydon Summer Festival. This is a great two day free music festival. We love to get there if we are home. We popped up for an hour or so this evening, between getting home from CHASE and getting Wills up on his TPN drip. Today was the Mela. We had a great time soaking up the atmosphere and watching some acts on the main stage, bollywood stage and the classical tent. It really has been a full weekend. Ellie said she felt like it had been a lot longer than a weekend and more like a holiday. I agree with that. It has been a very welcome break and an important one too given all that is coming up.

1 comment:

Chrissi said...

Glad Ellie and Hope had fun at sibling day. It sounds like CHASE provide a lot of play opportunities for William. I must say CHASE sound extremely supportive and as you say.. a lifeline.