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12 January 2013

Sad news

Our darling girl, Alice, gained her angel wings today. She passed away peacefully with Simon, Milly and myself by her side. We are devastated and know that our lives will never again be the same. 

12 January 2013


1 January 2013

Happy New Year

Can't believe that I'm really saying 'Happy New Year' to you all.  I don't think that there is a single doctor that would have expected me to be here when they sent me home over two years ago (although i have had a fair bit of help in keeping going LOL). Anyway, I did promise that I'd do an update …

I've only really managed one really good day in the last month and that was Christmas Day, so I don't know if that says it's in my head or if it was just luck, but it was the right day to have a good day LOL.

I'm on my mums laptop (which is a mac thing and really difficult to use) so I can't put the photo on here, but if you follow me on facebook, there's a photo of me on Christmas Day with all my dotty stuff. I was so pleased and have a whole dotty bedroom now and even a dotty iPod player / radio. Not on everyones list but I do practically live in my bedroom!

I'm not eating as much as I should so mum and dad keep making silly things with my food … yesterday, for lunch I got a bagel with Babybel eyes on top and french fries sticking out the sides of the bagel … that was their idea of a spider.  I am beginning to think that we are like care in the community and that they need looking after too LOL.

Thank you to everyone who has being leaving me messages on my facebook wall. I do read them all but sometimes I'm just too tired to start replying to everyone. Someone wrote that I can get my iPad battery looked at and make it last longer so thank you for that. My laptop is too heavy in bed but my iPad battery has been losing charge really quickly so we're going to get that sorted.

This month (that sounds good) my charity caravan will be arriving and I hope that I'm going to be well enough to go and spend the first night in it and pretend that I'm on an Alice's Escape LOL.  Mum and Cathy are planning all the bits for inside and figuring out the games system and TVs for it.  I'm so excited about this happening because every time I plan something, I always think that I won't be here to see it happen and then I am! So I'll try really hard not to pop off in the next few weeks and then I can be at the open day we're planning! Mum is busy planning another trip up Kili - she didn't quite make it last time and so she said she won't be beaten and she's going back again in October.  She's also hoping to do her training for Anthony Nolan and start running information sessions in work places and schools and colleges around here and then doing a clinic to join people up after she's told them all about it. It would be really good if I could just get a bit better and go to some of them with her. It seems to make people really think about it when they see me there, and realise that they might get the chance to save another me.

I'm back down to hospital tomorrow and Mum has told me that I've GOT to have another NG tube in, to see if she can fatten me up a bit. I know that it will help, so I'm okay with it, but I just don't like them and they make people stare at you even more.  Other than the fact that I'm really tired and funny lights still bother me, I feel a whole lot better and the lumps in my neck have actually gone down again. So, my New Year mission is to get a bit fatter which will hopefully give me more energy!

Oh and I want to say a special hello and Happy New Year to everyone back at Alder Hey because although I'm down at the Royal Marsden, I don't want them to think that I've forgotten them all.