30 July 2011

RAISING AWARENESS ...

Abigail Breslin, Cassidy Reiff and their band 'CABB' wrote and recorded this for me -

28 July 2011

I must learn to shut my mouth!

I said that I had a quiet week ahead in my last post lol. Well, it turned into a mad week back in Alder Hey. I had got more and more puffy through the week and they called me to say that my scan showed loads of fluid around my lungs.  I guess that was why I couldn't breathe!  Anyway, they got over 2 litres of fluid out of me in theatre and I feel almost new again.  So my quiet week didn't happen and we've had visitors all day every day since I got back so I'm still waiting for my chill week. 

I got back to lots of nice post, including some from two very special people DF and JI ... it was so lovely to hear from you both and Mum is figuring out how I can send mail back to you.  I also had a video sent from Abigail Breslin and Cassidy Reiff who have written and recorded a song for me, to be used to promote bone marrow awareness in the States and worldwide.  It's so awesome - I'm hoping that we'll figure out how to put a link on here but don't hold your breath, you know we're useless at anything technical.  I also had a lovely package from Beads of Courage.  They've sent me a load of beads, each symbolising a different treatment or procedure through my journey and I'm hoping to take them away to do next week.  

On Monday we are going to stay in a caravan (thank you to Heather and family) and I'm really looking forward to that as no one will know where we are and we can just stay in our jim jams and do nothing all day lol.  I'm off for a really nice treat day at the Lakeside Hotel with Milly and Mum on Wednesday and then we're back to Alder Hey, before heading on to London.  So it's busy, busy again but in a fun way.  Liberty is going to be stocking my Emma Bridgewater mug and I'm so excited about that, it's a really big thing, so I'm hoping to pop into the store and have a gawp at all the lovely things.  My mum takes Milly in there when Milly is at GOSH, but I've never been. If I'm up to it, I would like to go and see Shrek one of the nights and I also need (need not want) to go and look in the pet department at Harrods because I just love the stuff they have - it's really expensive but it's just so amazing.  Then on the Sunday, I'm going on safari in Kent lol ... I always wanted to go to Kenya and I know that's not going to happen so this is Kenya recreated in Kent and I'm really, really excited about it. 

The most exciting thing that's happened is that when I got back from hospital, Jason from Pets at Home came to visit me and I got two geckos.  They are so, so cute although my mum said they're ugly!  The bigger one is called Humphrey and the teeny one is called Wally, because we keep having to look really hard for him.  When I was going into theatre last week, Mum was trying to distract me with 'Where's Wally' (the book) and the anaesthetist then said he had an app on his iPhone, so I had the Wally bit in my head lol.

If you can, email me a photo of you with your mug - the furthest one has gone to Sydney at the moment.  I know that there's a million other things I should be writing, but because I'm so far behind, I can't remember what they are lol.  So i'll post this and then I can just add the other bits when I think what they are!  

Love Alice x

18 July 2011

Another gap!

I'm sorry that I haven't updated for a bit. I've had such a mad week and it left me feeling a bit worn out.
I had a scan at the hospital on Tuesday and it was a nightmare because you're expected to lay flat for ages and I couldn't manage to without coughing and that messed the image so they had to start it all over again. So because the scan took hours, we missed our train to London and then we were all really stressed. We shouldn't have been because the Virgin staff at Liverpool were really nice and gave us first class tickets and I just snoozed!
We didn't arrive at our hotel until quite late and we were just all so tired but, as usual, I couldn't sleep. I couldn't believe how noisy it was, I'm used to hearing nothing at night and just the cows in the morning - it was sirens all night in London.
In the morning, I got up late (but was still tired) and then we were picked up to go to meet John Woodcock who is our local MP here at home. We went to the House of Commons firstbto meet Ed Miliband. He must have thought I was a right numpty. I was dead nervous and struggled to open my mouth doh. Thankfully, by the time we went over to Downing Street, I felt a bit better and wasn't quite as nervous, plus the PM joked with me about sharks and that made things easier. I think that the day achieved a lot for Anthony Nolan and the NHS BM services, let's hope. Downing Street was amazing and I loved looking at the Prime Ministers portraits hanging all the way up the stairs. I had a few photos with the PM and we had some photos at the front with our MP although Dad joked that we looked like the Royle family (we are a bit mad)!
We went straight from Downing Street over to Chiswick to a film set where we'd been invited by a lady called Malina (I might have spelt that wrong)! The director and the producer were there (Ol and Pete) and they made us feel so welcome, Milly was in her element with headphones and a directors chair lol! I met Dakota Fanning and Jeremy Irvine who were so nice to me. Unfortunately I was feeling so tired from the day that we didn't get to see the Snow Angel's scene, but it was still so amazing. Hopefully, if I can pick up a bit, they've said I can go back which I'd love.
After London, we had to be back in Liverpool for Thursday morning. I spent all of Thursday and Friday in Alder Hey and it was stressful because they couldn't find a vein to get a cannula in. There's always a problem because I live over 100 miles away and I'm "out of area". Really, they'd just like me to use our "local" children's hospice, which isn't local, it's over an hour away. But then they wouldn't need to bother with me although the nurses are really nice at Alder Hey and I do love lots of the other people there. My mum is determined to make things better for other kids and their families in the future, it's not fair that kids like me miss out purely because we live in the wrong place.
I've had a quiet weekend doing not very much and I haven't got anything planned this coming week, which is nice for a change! I'm hoping our 'Alice' mugs arrive tomorrow! Hope you have a nice week x

12 July 2011

Leaving ...

Well, mum is running around shouting like a mad thing so I guess that means we're leaving soon! I've got to go to Liverpool first, and then I think we're getting on a train at tea time to go from there to London.
I'm not really nervous about tomorrow's meeting with the PM, I'm just worried about getting there and it happening lol. Mabel has gone to my Nan & Grandad for a few days and I'll miss her, although she probably won't miss me cos she loves being there, it's like a holiday camp for dogs!
Then, on Thursday I've got be back at Alder Hey again, but hopefully home on Friday so that's not too bad. Okay, I've got to go cos mum is getting stressy! I won't be able to update my blog for a few days because I don't have a sim card for this yet, but I'll update at the weekend :)

10 July 2011

Oops

Another oops - I can't figure out how to put the link to my mug on, so I'll have to get mum to do it tomorrow. I should have known it would go wrong. Sorry!
Well, I had another surprise tonight and I went to the Brewery Arts Centre in Kendal and they put us in a gorgeous private cinema room with squashy sofas and coffee tables. Then, they started the film and suddenly, there was Tracey Jackson who wrote the film 'Confessions of a shopaholic' talking to me! She was really nice and quite funny too and she has sent me a huge signed poster and a flip camera I'm so excited about. I did some animation when I was in hospital and they told me about these flip cams so watch out, I'll be making a film next. The film was fab and it was so nice to be chilling on a sofa with Sammi, plus popcorn and drinks of course! Thank you to Tracey and to everyone at the Brewery Arts.
I'm not too good at the moment and so we've had to decide against the trip to Alton Towers next week. I don't think I'd enjoy it and it seems a waste just to go for the sake of it. Hopefully, they'll be another chance.
Mabel has been very naughty again and eaten yet another flip flop (green this time). It's almost funny, because mum shouts at her but you can tell she's not really serious. I know that she has a big soft spot for Mabel and Mabel gets away with murder! Bessie isn't quick enough, she always gets caught!
Hope you're all having a nice weekend,
Alice x

9 July 2011

My Emma Bridgewater mug ...

A few people have asked how to find my mug, so here is a link which should take you straight there - www.emmabridgewater.co.uk/specials/alices-12-pint-mug

8 July 2011

A bit of a delay

Sorry I've taken ages to update. We had a THHN break last weekend and it was really nice to be away. The sun stayed out most of the time and we had lovely lunches at the Cliffs Railway cafe and at Angels. I love being by the sea, especially when the sun is smiling! I've been a bit tired this week and haven't got much done really. Today I was back at Alder Hey again - my line is still playing up and I feel really ill every time they flush it, so I'm hoping that it gets sorted.
This weekend, there is a surprise arranged for me but I don't know what yet. Knowing mum, we'll be jumping out of a plane or something! Then, on Monday, I get to go and stay in the chocolate room at Alton Towers, with all my friends, which I can't wait for. On Wednesday, I'm going to London to meet the Prime Minister which I'm really nervous about. I know what I want to achieve, but I'm not sure that it will come out right. Perhaps I'll write it down and just smile and hand it over lol.
Im still having lots and lots of fun with my new iPad. It is so amazing and I keep finding more things to do with it. And I've found lots of new games and apps. I really like camera+ which Annabel told us about.
Okay, tired and yawning so I'm going to go. I do manage to sleep better now. I think it's a mix of all your ideas - vicks on feet, lavender oil, lemon water, oh and sleepy tablets lol.

2 July 2011

Happy smiley day :)

Today was a good day :)
I actually managed to sleep a bit last night, so that meant I felt better today!
About 10 years ago, a photographer called Annabel Williams took some lovely photographs of our family. Me and Milly look dead cute in them :) Well, just after my blog became big, Annabel contacted mum and offered to do some up to date family photos for us and today was the day. We did some photos in the house, some in the field and then we went down to the beach with the dogs for more. I was quite tired by the end, but I'm really excited to see the results, especially the ones with Mabel in. Thank you to Annabel :)
Then tonight, after I'd had a good snooze, Clarissa popped to see me and I showed her how to tweet - that was funny because just a week ago, I didn't know what I was doing! Now I've just got to get Sammi and Megs on Twitter.
I have lots of things arranged in the next few weeks - we're hoping to visit some friends in the south, I'm off to stay in the chocolate room at Alton Towers and I'm going to be meeting the Prime Minister to discuss bone marrow registry.
Oh and Mr whatshisface didn't get to me, I'm made of much stronger stuff!
Night, night .... keep spreading the words BONE MARROW REGISTRY x

1 July 2011

Mr John Smith ...

Mr John Smith from the US who posted a message on 30 June ...
Your blog comment is ignorant ... I've pasted extracts below. Has it occurred to you that we have both researched and tried several alternatives.  That may be something to do with why I'm still here FOUR YEARS after being diagnosed!  I'm confused, do we not all die eventually?  As for wasting a huge amount of time, I've spent four years fighting this - now I am resigned to nothing other than filling every day with magical moments ...
"you seem resigned to death and wasting all your time and blogs and lists. i really think you and your mother should be researching alternative cancer cures instead of wasting all this huge amount of time on collecting randoms people sympathies and trying to become famous"
BLAH DE BLAH DE BLAH .... (several hours later) ...
"might be best if you invested some of your time in doing your own research as unfortunately free things are seldom appreciated and often resented. up to you. adieus.i won't be posting again as i don't believe in mollycoddling and if you can't be bothered then why should i?"
At least we can all thank our lucky stars that you won't be posting again. Please don't, you're not welcome on my happy pages ... saddo :P

Normal update to follow for the happy people :)