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30 October 2011

Lazing in the lodge

Hello, I've had lots of messages asking why I haven't updated and I'm pleased to say that I've not died yet, i've just been busy lol.
There's a lot been going on. I've been down to Devon with my family and we stayed in a really beautiful lodge at Finlake which was offered to us through the THHN. We had a really nice week doing not very much, watched lots of DVDs and me and my sister got invited to go for horse riding at the Finlake riding stables.  I haven't been on a horse for years so I was a bit nervus but once I got going, it was really good fun. We also went to Angel's Tea Rooms in Babbacomb which is our favourite place to visit when we go down there. You've got to go, it's amazing and I love the heart shaped scones.
When we got back, mum did some more decorating cos she's trying to finish our hallway that she started two years ago lol.  She also did my room and I've got nice sandy gold walls and aubergine cushions and bits and it looks really nice, I'm dead pleased.
I've been down to Pets at Home in Barrow to see Jason and all my friends there and Milly bought loads of things for our rabbit and then she cleaned his house out which is her old playhouse so it's huge for a rabbit. He's quite lucky I think!  I'm dead excited to see the treat packages that Mabel is going to be on soon. I'll be sending them to all of Mabel's doggy friends with a ribbon on.
We took Mabel to see the old people down the road again. They all give her biscuits which she loves, but some of them forget who she is and tell us that they've never had a dog before. Mum is dead patient and just says oh haven't you, well we'll come back should we.  And we know that when we go back they've probably forgotten us again. It's quite sad but mum said at least they won't sit there worrying about things at night cos they won't remember lol.  Anyway there's a couple of them who do remember Mabel and their faces are really happy when they see me walk in with her so that feels really good.  I'm hoping to go again this week, but I've got my infusion tomorrow so I'll have to see how I feel.
Tomorrow will be my last infusion which is a bit weird cos I know there's nothing else.  My scan isn't booked for a bit so I think that it will be too late to do the radiation thing by then, so there's nothing else now.  I know I can't keep having things done but if they did the radiation now on all the lumps on my neck, it might just help a little bit.  But I don't know and I suppose it probably costs a fortune and if I hadn't done my blog I wouldn't even have been given the trial stuff cos they'd already sent me home, so I suppose I've had longer anyway really.
You will probably laugh at me because we're having Christmas in November this year as well as in December ( i hope). I've got a chocolate advent calendar and on Tuesday when it is the 1st, me and Milly are going to start our Christmas thing. I've bought a new gold tree for my room (cos it's gold) and mum is going to decorate the house and all that.  We were going to have Christmas Day on the 25th but it will be year since my little friend Fergus got his wings so it wouldn't be right to do it on that day so the 26th can be Christmas Day and we're going to have a proper lunch and open a gift and have a party for my friends on the Sunday. Last year I was so ill at Christmas that I didn't even open a present and dad had to eat his lunch on his own. So we aren't been miserable we're just making sure that we do get one this year. 
I can't say too much but I'm really excited that I'm going to be launching my own charity very soon. It will help lots of other kids like me and it will something that my mum can do to keep her busy. I think that the website will be working very soon and that I will be able to tell you all about it in the next week or bit more.
Sorry I was a long time writing this. Have a nice week, love Alice :)

13 October 2011

A lot to say :)

I've had such a busy week that I am having to think about what I told you last time (I can't see what I wrote when I do this).
I think it was my Grandad's birthday and we all went out for a meal which was nice to be together but our meal was horrid.  I made Grandad a photo album of mainly me and Milly and he loves it. Mum had got him a Emma Bridgewater 'Papa Bear' mug cos thats what she calls him lol.
The day after, I went to Alder Hey and I had my scan as well.  The new drug has been helping massive amounts on my chest areas but the cancer is just not playing and it is growing new lumps in my neck.  So I don't think that there's anything else really, unless they blast them with more radiation or something? I've had radiation before but not on my neck so maybe they can do that. 
After Liverpool, we went down to London and the train was a nightmare.  We missed the first one so that was our fault but the second one had no seats and then the man on the train told everyone to get off at Preston as the line was closed further down, so we got a train back to Oxenholme to get our car and by the time we got back, the line was open again! Anyway, Kevin at Oxenholme put us all in first class and I slept almost all of the way cos I was so tired, but the seats were nice and comfy.  We arrived at our hotel, The Mayfair, after midnight and it was really posh. There was a bit of a mix up with our room so we got upgraded to a suite and it was amazing - it was bigger than our house.  On Friday daytime, we all loved the rooms so much that none of us went out!
At night time it was the Inspiration Awards and everyone came to our suite for drinks before we all went.  When we got there, we stopped the taxi and sneaked in the door at the side so I didn't have to go through the cameras lol.  It was a lovely night and I met Beverley-de-Gale who is such an inspirational lady - I'm going to add a link somewhere. I was really nervous so I was glad my category was first, but I still couldn't believe it when I won.  I was terrified so I ran on and took it off Jay Bothroyd who was presenting it and then I ran off again.  But when I went backstage with him we laughed about it, I said I didn't know what to do and he was really nice.  The singers were amazing and we all really enjoyed listening to them.  We met Sky who is the founder of the awards (he is dead dead funny). Then it was Milly's turn to find out and I was really happy that she won her category too.  She was much better than me and managed not to fall over in her huge heels and stood on the stage looking really good. And Mum said I've not to really mention this but that doesn't normally stop me, so (ha ha).  Sky went on stage and started reading about this amazing group and we were all just listening and then I heard dad go oh no, and then Sky called our entire family up for a special award. Mum's face was so funny and she couldn't even talk properly on stage.  After that Mum was dead excited to hug a lady we met backstage and I didn't have a clue who she was, and mum was like, what, you must know who she is! It was Annie Lennox (I've looked her up now, doh). 
The next day, we had to go back to our life and move from the very posh suite to the Premier Inn at Euston lol.  Our room there was about as big as the bathroom in the Mayfair, but it was fine and staff were really nice too. At the awards, Dad promised me and Milly a treat and so we asked to go to the theatre.  We wanted to see War Horse but the only tickets we found were really expensive and so we ended up going to see the Wizard of Oz, which was brilliant and we all really enjoyed it.  We got the train back up on Sunday - the Virgin man at Euston was so unhelpful when we tried to sort out getting on with my wheelchair, but then a lady told dad to go to mobility services and they were really helpful and smiley with it!  We arrived back into Oxenholme to the smiles of Kevin who had waved us off on Thursday.  I enjoyed visiting London but I was glad to be back in Cumbria!
On Monday we did a radio interview at like 6.45 and I went blank and there was this silence on the radio and mum had to help me.  Then, I was back down to Alder Hey and neither of us felt like the long drive cos we were so tired.  Although my scan wasn't really good news as such, I feel so much better at the moment and they've decided that I can finish off the stocks!  So I had one on Monday and I have my final one in two and a bit weeks and then, if there's no radiation, I guess that's it. 
I've only just got up today because yesterday was one of those days and the first thing I've opened is a gorgeous huge card from Emily, congratulating us all.  It's so funny that I'll try to scan it onto here.
One of my missions at the moment is talking to any card companies that want to help me gain more bone marrow donors by raising awareness through their 18th cards, and I'm really happy that both Hallmark and Clinton cards have been in touch with me. A few others have been in touch for more details but a lot haven't - I'm waiting!
Next week, mum is taking us off for a break with the THHN and we're staying at a place called Finlake. Dad has to work, but I can't wait and I'm taking lots of DVDs and planning some duvet days lol.  I will update from Devon and when I get back I won't have long until I can share with you my really big news. No, it's not a cure for me, but it's something that means so much to me and I'm hoping that Cumbria will support me!

4 October 2011

Another for the bucket list

I have a few missions in my head. One is going to become real very soon and then I can tell you about it, but there's another thing that's bugging me. It's really good that I'm getting so many people to join the register, but what about when I'm not here? I don't want it all to stop and I've been thinking lots about how to carry on telling everyone forever.  I said something the other day and I can't even remember why I said it, but I said that it's a pity that the card people don't put details of Anthony Nolan on the back of their 18th birthday cards.  And that made me think why don't they - it's a really simple idea but for whatever reason it doesn't happen and I really think that it could work to encourage young, healthy donors.  

So my next mission is to start another Twitter campaign and contact all of the big card companies like Hallmark, Clinton, Carte Blanche, Camden, Phoenix and the internet places like Moon Pig and Funky Pigeon, and get them to think about doing something about it. Such a little thing could make such a big difference and I bet that some of their workers must have been affected by cancer and in need of a transplant.  There's must be loads and loads of 18th cards bought every day and I want them all to have a message on them.  

So email me and I can come and meet you with one of the Anthony Nolan people.  I really, really need this to happen!

2 October 2011

Big Smiles :)

I have had probably the best weekend that I've had for ages and ages.  Alton Towers was brilliant and they really looked after us and the Chocolate room was really cool. There was a really cute teddy waiting for me with a load of balloons! It had loads of chocolate hidden and every time you walked in, it had all these sound effect things, like been on a steam train.  We had a good meal in Flambo at night and Cristina looked after us with lots of smiles :)
They even gave us fastpass tickets so we didn't have to queue which was good. I really did try to do a big ride.  I nearly did 'Air', but I was a bit unsure so mum said she'd go on and wave at me and I could think about it.  Uncle Gary stayed with me and mum took Rhys and Sammi with her, but they were gone for ages and the ride had stopped but we didn't know why. When they arrived back, guess what?  They'd got on the ride and it had clamped their legs and then it had tilted them so they were hanging face down and then it broke down.  So they'd been stuck in it, hanging there for about 20 minutes.  Mum thought it was hilarious, but it put me off.  I loved the mine train and we all laughed cos it was quiet and they gave us extra goes and every time we went through, we shouted 'Choo choo' (cos that's what the man had to say but he was laughing with us).  So thank you Alton Towers, I had a really brilliant brilliant time x

On the way back from Alton Towers, we called in to see Leigh and Rachel at Emma Bridgewater and we met some new people too.  It was really good to see them and they were having a coffee morning downstairs, so we bought some cakes and I painted a new bowl for my cereal with Mabel on it (mum smashed my last one by accident). I got some bits in the shop for presents and I bought a chocolate labrador mug (we already have a yellow one and a black one). I've got another reason to try and get to my 16th birthday, because I decided that I'd like a pottery party there for me and my friends.  Mum said that we can book a hotel down there so it's not too much on one day.

And then, my weekend got better because I went to the Andrew Collinge Salon in Liverpool to get my wig. We were really late because the M6 had an accident on it and the traffic had stopped but we phoned and Amy was really nice and said not to worry.  I got to meet Andrew who was a really nice man and he introduced me to Olivia who was doing my hair.  It was really weird because you have to put it on so that it can be cut into a style on your head.  I was watching myself in the mirror and I just couldn't stop smiling. Gemma did mums hair and mum was so happy and it looks really nice.  So I'm going to put a photo on here of me with my new hair, because I love my new hair. Thank you to everyone at Andrew Collinge and the Teenage Cancer Trust.

Me and my new hair
We were staying in Liverpool for the whole weekend as my treat and I got to go to Pizza Express for my dinner and on Saturday I found a dress for next Friday.  I was really worried about finding something to wear but I'm quite happy and I think I look okay in it.  I haven't found any shoes yet but I'm looking.  I know I don't have to worry, but I'm a bit nervous about the awards night. We are going to London on Thursday night so that I don't have to travel on the day of the awards and we might get to stay an extra night and do a show on the Saturday night.

Yesterday, mum did a workshop thing at the Apple shop in Liverpool and she started to put her photos in order but she has got thousands of them so it was a bit of a mess. She's trying to do a video of me but she is finding it hard to work her new laptop. But they were really good and then today she had a proper lesson and she said it was really good and that she thinks she gets it now. So I'm in my bedroom doing this and Dad is doing work stuff (for a change NOT) and Mum is in the study doing her photo thing.  So I've got to say a special thank you to Chris and everyone in the Apple store who helped my mum.

So I've had a really nice weekend :) I better go now cos we're going to go and meet my sister from her school trip. I can't wait to see her and here about her adventures.