1,000 days

It's a thousand days since my sister left us (and almost as long since I've updated this blog). I didn't realise it was, but Mum has this date and time app and every so often, it pops up and tells us it's been so many weeks or so many days and she doesn't like to delete it now. So it keeps popping up.

I was trying to figure out how old I'd be when it reaches 10,000 days ... 100,000 days ... dead probably. It seems an awfully long time away and yet it's strange, because it doesn't seem two minutes since Alice was here. But time is just that and nothing more; it doesn't blur the memories I have. As a ten-year-old, I can recall my disbelief at not being old enough to join Mum on a girls spa day. In the background, desperate to rescue the situation, Alice was busy creating our own spa escape, offering nails, Lush baths and massage, complete with snacks and drinks. We finished the night off snuggled together watching a movie. In all honesty, I probably had more fun than I'd have had at the real spa. Those are the kind of memories that feel as if they happened yesterday (minus the Princess strop) and those are the things I miss.

Alice's spa sign

In my last blog post, I was just into my GCSE exams. With the exception of a couple, they weren't as bad as they could have been and I was happy with my results. I had been accepted onto a Film Production course (screen writing is something I'm really interested in) but my results also gained me a place at Lancaster Girls Grammar Sixth Form, which left me with a dilemma. Ultimately, I decided that A levels were the best route for me and I'm now studying English Language, English Literature, Art and Geography - all subjects I love! In art, we're studying Juxtaposition and I've chosen to do War and Peace which I'm enjoying developing. Lancaster is a beautiful city, the school is full of opportunities and I think I made the right choice.

One of my art pieces

Through the summer, we returned back to Cornwall with my friend, Callum, and the Mums even attempted to learn to surf (which was semi successful)! We enjoyed camping back at Wooda with fantastic weather and many memorable days on the beach with the fantastic team at Big Blue Surf School. I also travelled to Italy and visited Rome, Pisa and, most importantly, Pompeii, where we scattered some of Alice's ashes according to her wishes.

Me and Callum in Cornwall

I also experienced my first solo festival, Kendal Calling, which was a fantastic experience, saddened by the death of a fellow festival goer on the first evening. I didn't know the person concerned, but it certainly affected people. Life is so fragile.

I'm continuing with my volunteering. Alice's charity has been really busy through the summer and we've met some amazing families. Mabel is often down at the charity office and the children love her - Lottie is kept hidden as she is full of Tigger-like bounciness!  Starting at LGGS gave me an opportunity to continue volunteering at Oxfam as part of my Enrichment Program. It's really good to be able to continue to volunteer locally as these places couldn't operate without volunteers.

Yay, no uniform!

I've just turned seventeen and for my birthday, my Nan and Grandad bought me ten driving lessons! I had my first one on my birthday and it's going well, if a little scary. Thankfully, I've improved since lesson three when I almost drove into a wall - dual control has its benefit!

Only two weeks from now, I'll actually be in PERU trekking for Alice! I can't believe it's come around so quickly. I'm taking my GoPro with me and hope to edit a video of my trip. This will be my first big trip without Mum being a part of it which will be strange, although she was lucky enough to do the same trek a few years back as part of a fundraising team for Great Ormond Street Hospital. Anyway, sponsor link for my trek in aid of Alice's Escapes is HERE and if you keep an eye on Alice's Facebook page, I'll be making some Alice things to raise funds too.

I'll hopefully update when I get back ... will leave you with the last training video I edited.

Milly x

My Amazing Girls ...

Yesterday morning, after six days of climbing, my amazing Milly mops summited the world's tallest freestanding mountain for her sister.

She battled on despite severe sickness and pain and managed to fulfil Alice's wish to have some of her ashes scattered on the top of Kilimanjaro, which is almost 6,000 metres high.

This is definitely a proud mummy moment - I was blessed with two extraordinary girls 

Thanks Tesco :)

Wow, guess what?  Tesco have phoned my mum and I'm getting to choose a new phone and they are getting me connected again and I shouldn't be without a phone for too much longer. Thanks for all the tweets, i'm getting to be a big twitter fan, it's cool once you get used to it. So if you don't tweet yet, go and try it lol :)

Look no hair!

It's actually look no hair for the 6th time and I was a bit upset at first, but I'm fine now.  The reason it's dropping out is because I've been trying a new drug that will hopefully slow things down and give me longer - I'm aiming for Christmas partly because because it will be my 16th and partly so that I can write my Christmas list to santa.  I didn't want to say anything about it until we knew if it was helping me in any way, but that's why i have gaps away from here.  Anyway, I've been having it for about 6 weeks and it seems to be working at the moment but the downside is that I'm quite tired and also that my hair has fallen out.  Mum has been busy ordering me some new bandanas because we gave all of mine away last year to some other girls on the ward as mine wasn't going to fall out again.  Nice one mum!

I'm glad that I've now got a sim card for my iPad because my mobile phone still isn't working.  Mum and Dad bought me a top up voucher for my new Nokia at the beginning of August and it didn't work and we went backward and forward in-between hospital stays and Tesco gave us another one and then another one.  None of them worked and then the store said it was my phone and we had to call Tesco mobile and sort it out with them. So my mum rang them and spent ages on the phone and they said that it's not their fault and that it is the stores fault and that mum has to go back to the store.  Mum said that she's been driving up and down to Tesco and it's 20 miles every time and that she wanted them to sort it as nothing was getting done and I have no phone and the woman said she'd put her through to another department and then they cut mum off!  So I've had no phone for nearly a month and I can't get a different sim because it is stuck to them.  So Tesco, if you're reading this, please sort my phone out for me.

This is my big surprise.  I got out of hospital just in time to take Mabel for a photoshoot with Jason because guess what Mabel is going to be a Pet's at Home cover girl and go on the front of their new dog treat packets.  So every time you go into Pet's at Home, Mabel will be hanging up on a packet somewhere in the store.  And that's another reason I want to be here at Christmas lol.  We had lots of fun having the photos taken and trying to get Mabel to sit still with her mouth just a little bit open and her tongue hanging out.  That was my first day out of hospital and basically I've slept every day since that until today when I got up at lunch time to go shopping at Pet's at Home.  I bought Mabel and Bess a new squashy bed.

Although I've been tired I do feel a lot better at the moment and I'm looking forward to doing a few more things but I still can't really get on a plane and go just anyway so it's lovely to get nice offers from away, and I'd especially love to do the Whale watching in Alaska but it's not going to happen and I did get a cool video sent to me.  I might try to go to Scotland if Mum and Dad will take me because ages back, we did have a lovely email offering a whale boat trip and things in a seaside village.  That would be quite nice I think :)

Right, I'm going to go to bed now I'm tired but I wanted to update you all and ask you to all keep spreading the bone marrow word ... spit spit spit!

Milly's GOSH Christmas Card

Hello, I've had a much better weekend and although I'm still stuck in hospital, I hope to get out soon!
My little sister Milly did some drawings for Great Ormond Street a few years ago and in May, they asked Milly if it was okay to use them to create a new card. Her last Christmas card raised over £50,000 for GOSH, so I hope you'll all buy this one and support the hospital where she has been treated since birth. She loves her hospital and we really hope this gets them lots of money to help the kids there.
Please share the link that I'm going to put on the side somewhere - buying just one pack will really make a difference!
Oh and I'm also going to try and link to a video of Milly's Snowman card from a couple of years ago. It shows you why you should buy charity cards direct from the charity and not through a high street store!
Alice :)

Still here :)

Hello everyone, sorry it's been ages. I've not been well but I'm doing okay and there's no way I'm going anywhere yet! I'm not allowed to use the hospital wifi and it's been a bit boring so mum went out today and bought me a sim for my iPad and so yippee, I'm online.
It's a bit ago now but I had a night at Livingston Lodge safari park which was amazing - I left from hospital and came straight back here but it was really cool, we got to feed the giraffe really close up. Miranda and everyone at the Thistle made me feel very special too.
I was really cross on Monday when mum and me watched Granada news and they said that I had been admitted to hospital in a really sort of glum voice and made it sound really serious. Mum got loads of texts and emails from friends who thought that I was about to drop dead. We can't stand negative people. Mum said that they must have been short on news, but if they wanted to do something about me, they should have picked up on my Emma Bridegwater story which was nice and positive. Liberty of London are now selling my mug and so are Murrays in Barrow (mum says thank you Helen), and you can still get it online at Emma Bridgewater.
I have just seen a lovely message from Priya but I really can't travel anywhere which is sad but just life, but thank you anyway. I would have loved that. And I do remember you, the nice security man from when I met Take That. There's been so many nice people, I wish I could remember all the names.
And I'm sorry I can't post photos, we are still trying to do it securely. It's sad that a few feel that they have the right to pinch photos and then pretend to be me, but that's what happened on Facebook at the beginning and because of them we have to be careful.
Okay, I'm going but I will be back. Tomorrow is Milly's birthday so we're having a party lunch on the ward :)

RAISING AWARENESS ...

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

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

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

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 :)

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

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

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.

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

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 :)

Can't sleep ... again

Another night exactly like every other :(
Although I cough all day, the second I try to get some sleep, it starts off big style. Mum is laying on her air mattress pretending she doesn't mind being awake. We've been to the doctor today and I now have a variety of things that are going to calm the coughing and knock me out ... except they're not working and we're all awake.
I've got to be up early to go down to hospital so that'll be great. A million weeks after mum mentioned my line splitting, they are going to do something with it.
Last night I had a great time at my local cinema, the Apollo in Barrow. They'd arranged it as a surprise for me and I even got to go in a limo! Along with Team Alice, I watched "The Bucket List". I didn't cry, but I caught a few out lol. Small town, big heart!
Then tonight, I went with Milly, Clarissa, Sammi and Megs for a girly photo shoot at Kells Studio in Barrow - that was fan dab and Dawn managed to make me look quite good too (I usually look half asleep and I never wear make up).  Mabel managed to crawl her way into some of the photos so they will be special. We had so much fun!
More big news is that my mug is available to order on the Emma Bridgewater website ... so if you want one, hurray!
Got to go because I'm coughing so much that this is taking me hours to type.

Oops

I'm sorry that some of you can't find me on Twitter. I promise I'm there, just look for @Alice_Pyne and you should find me. I actually quite like twittering and as I had to close my Facebook account, it means a lot.
I've been getting loads and loads of emails and messages about my mug and I'm a bit worried if there'll be enough for everyone. The mug should be on in about 2 weeks time, that's all I know. They're supporting the THHN, a great charity that is very close to my heart
I will get the original - the very first stamped by me, next week. Tempted to say I'll auction it to raise even more for charity, but I know my mum will use it forever so maybe not LOL!
Tomorrow, I'm having my very own cinema screening at the Apollo in Barrow so I best get my invites out as I've only managed to tell a couple of people. Oops!

Mug heaven

There was a point when I thought we were never going to get there, but after 3 1/2 hours and three major hold ups, we got to the Emma Bridgewater factory in Stoke. I have been so excited about today, because we've collected Bridgewater pottery for years and to have my own design in production is unbelievable. The mug will be available on the Bridgewater website in around 2 weeks time, supporting the THHN. Stock will be limited and all will bear my signature x
Tired now, bed time, night night x

Doodle jump and Angry Birds ...

Oh wow, I am having so much fun with this ipad I can't believe it.  I have started buying some of the games (oops mum will be reading and it's her itunes account) and I'm getting quite hooked on Angry Birds.  Every time I almost get it but not quite and then I just have to have another go!  I'm not that good at Doodle Jump yet, it's taken me ages to figure out that the thing jumps off the side but comes back on again. I keep missing it and die, more practise needed.
I'm also having so much fun using all the camera bits and I keep getting unsuspecting people to pose for me, which makes it even funnier because they don't know ;)
Today wasn't my best day :( I can't get to sleep at night and then by morning I'm so tired that I could sleep all day.  So I didn't even get up until 2 today, how bad is that.  But once I was up I went to see my neighbour Adrian (he bought me my ipad) at his work and I wandered around and said hello to all the staff there.  I even got David to play Doodle Jump but he was about as good as my mum which is not good lol. Then we went for a drive around and went out for some tea because mum hasn't been shopping for about a year. 
Tomorrow is the first of my massage and treat days and I can't wait for that.  My skin is all dry and a bit of a mess really so I hope that I feel a bit nicer afterwards.  Mum is going with me and I think she is planning to sleep in the waiting room for an hour lol. 
Please don't forget to keep asking everyone you know to go and join the bone marrow register in your country.  Somewhere out there, is a young lad in his 20s who, a year ago, was told he was a match for a child in the UK.  Whoever you are, thank you for been willing to save me x

ipad heaven

Oh wow I am in ipad heaven, I love it!  My mum does too but not for the reason you will think, you'll laugh.  I can't sleep at night and usually mum or dad end up staying up all night to keep me company but last night I had my ipad to play with.  I watched a film on it and then I played games on it and then I checked my twitter on it, and then I played with the camera thing that makes your face look all weird lol. My nan bought me a itunes voucher so I'm going to buy some more games and films with it. Any ipad app suggestions you think I should try?

My mum is trying to protect some of my photos for me and then we'll put a few up on here because I really want to share some of them with you, especially my dad in a pink hummer lol.

I have a really huge thing happening on Friday and I'm so excited about it.  I'm going to the Emma Bridgewater factory to design my mug and I can't wait.  I have my idea and I'll have to see if they like it and if it will work on a mug.  My mum is dead funny because she said, right that's everyones xmas pressie got lol.  I don't think she's joking.
On a serious note, some sick person has managed to hack into the Post Pals site again, only this time they're changing the pages and content.  Sadly, the site has had to be taken offline for a bit while they sort this.  Would you please follow 'Post Pals' securely on facebook and use the secure donation link to the left to donate directly (without going near the Post Pal site).  I can't believe anyone would want to take from such poorly innocent children, please don't let them win.