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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.
Posted by Milly ... for
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61 comments:

  1. Anonymous8 July 2011 at 01:25

    Can't wait to see you on the BBC news when you meet the PM! World famous then :) hopefully millions will sign up to the BMR and you can tick that off your list as something huge you've achieved. After meeting him scream into a camera "SIGN UP TO BE A BONE MARROW DONER!" or something!! Put him on the spot and ask him if he is on the list ;)

    Hope your surprise is good. Looking forward to hearing what it is.

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  2. Simon Wallett8 July 2011 at 01:48

    I have never heard of the Chocolate room at Alton Towers, as I assume your can't eat the fixtures and fittings it had better have a fridge full of the stuff for you. Enjoy the rides and make sure you get cue jumping privileges.

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  3. Simon Wallett8 July 2011 at 01:53

    We are currently tendering to build the new Alder Hey Hospital, it would be a great chance to build a new up to date unit which would hopefully benefit many.

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  4. Siobhán8 July 2011 at 01:55

    You are an inspiration and I look up to you. I love reading your blog and I wish you all the best in the future. I hope that you have an amazing weekend.

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  5. Angella8 July 2011 at 02:06

    LOVE a good surprise! Make sure and tell us what it is. Thoughts and prayers with you and your family...and cuddle puddles for Mabel. xx

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  6. JuJu8 July 2011 at 02:11

    Have a marvelous weekend dear Alice!

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  7. traceyjackson@mac.com8 July 2011 at 03:34

    Alice, so glad you are sleeping better. It's awful when you are not feeling well and then not sleeping on top of it. But it sounds like you have a fun filled couple days coming up. I'm still awed that you get to meet David Cameron next week. Wow! You are really accomplishing more in a short period of time than many do in decades. I hope you enjoy the chocolate room. Is there actual chocolate in the room or it just looks like chocolate? Glad the lavender oil might be helping, that was my suggestion. I do like it. Sometimes I carry it in my bag for when I'm nervous, maybe before you meet the Prime Minister you will want to take a whiff. I know I would.
    Well, darling girl, take care, enjoy your weekend of activities and just keep on being you.
    xxoooxxo Tracey

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  8. Jim and Sandie8 July 2011 at 04:00

    So many exciting things going on in your life, no wonder it's hard to sleep. But I am glad you're getting more rest. Sleeping is a good thing.

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  9. TGS8 July 2011 at 04:30

    Hi Alice! How cool to be meeting the Prime Minister!!! I think writing down your ideas would be a great plan. I've always found it much easier to do this when it's something important.
    Have fun this weekend, I'm sure your Mum has planned something great.

    Tina, NZ

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  10. RAJESH R8 July 2011 at 04:41

    you are someone special...

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  11. Unknown8 July 2011 at 05:12

    Dear Little Alice, There are many instances where desires overcame and cured diseases. You can easily do that. I would like to see you for many more years to come. So do not go from this world, pump your desires and stay remaim................. Loads of love....


    P.Muhammed Jafar
    Bangalore.
    India

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  12. Basil8 July 2011 at 05:38

    You are a miracle Alice hope that God will do miracles in your life...

    Cheers!!!
    Basi
    India

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  13. AnnaGoAnna8 July 2011 at 06:35

    Hi Alice, lovely to hear your news and so pleased you had a wonderful time away. Can't wait to hear what your surprise is.. Nor about your visit to the PM!

    Big hugs to you all
    Annagoanna

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  14. IT8 July 2011 at 06:47

    Great to hear from you. Good luck with your trip.

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  15. Anoop8 July 2011 at 07:09

    hey Alice,

    I am Anoop from India. very happy to see that your bucket list is getting done...:) reading all your posts... great to see that you are very happy and enjoying ur days. very prod to be a follower and I like to receive a reply from you... hope u will read this comment...

    Enjoy life... tk care..

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  16. Bryan Burke8 July 2011 at 07:13

    Oh I love surprises, wonder what it will be?
    Like many others I would assume, I am now wondering if we have a problem with the royal mail, we are all waiting on our invites top come along to the chocolate room too. Does it just not sound absolutely fantastic, more chocolate than you could point a stick at!! I think I would maybe make a pig of myself :0)
    As far as the PM goes, don't worry about it. He's just a normal person who just happens to do a different job to the people you know. He's no different to your teachers, doctors, nurses, mum or dad.

    Bryan

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  17. Shorefield Parks8 July 2011 at 08:25

    Hi Alice, we'd very much like help you with your wish of staying in a caravan. I work at Shorefield Country Park and we are all very touched by your story. You can contact us via our Twitter page ShorefieldParks.

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  18. ducksandgeese8 July 2011 at 08:38

    Good times Alice. Hope your trip to Alder Hay means your line is now sorted. What a great week ahead you've got, and how lucky is the PM to get to meet you! Looking forward to hearing what your mum has planned for your w/end.I'm disappointed that I'm too old to go on BM register,so doing 10 mile walk for local hospice tomorrow night instead.This quote could have been written for you Alice:) xxxxx
    Cherish yesterday
    Dream about tomorrow
    Live for today

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  19. DOT8 July 2011 at 08:38

    `Just don't mention Andy Coulson, his former press spokesman and editor of the News of the World, to the Prime Minister or he will be the nervous one. Seriously, I am sure that you just meeting him will get your message across. The words will come.

    I really envy you going to the chocolate room - never heard of it, but then I've never been to Alton Towers. Probably too old to be allowed in.

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  20. sch8 July 2011 at 09:39

    Hi Alice! What kind of caravan do you want to stay in? I live in Azerbaijan and we have karavan sarays here-- they are where people stayed in the 18th century and earlier when they traveled trade routes-- so they are very old but very interesting! My favorite is the one in Sheki: http://azerbaijan24.com/hotels/hotel/54-Sheki.html

    I hope you have a great weekend-- sounds like you have lots of fun things planned, and don't be nervous about Monday, it will go great. Also, please ignore people like Mr. John Smith, as I doubt he is really named John Smith or even from the US, as we never say "mollycoddling" there. :)

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  21. HanPlans8 July 2011 at 10:15

    Write a list of all the questions you want to ask Mr C and all the bits of information you want to tell him. You can then read them straight from it if you get nervous or elaborate on each point.

    I'll bet you'll be a natural and it'll all be fine :) Big hugs Alice!

    Hope you have a great time this weekend!

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  22. Anonymous8 July 2011 at 11:56

    Have a great time at Alton Towers, we also have some great parks here in Germany too, just never find the time to visit them lol.
    Don't be nervous about meeting the PM, i'm sure you'll do fine.
    Good to see that you are working your way through your 'to do list'.
    Have a great weekend...
    Lxx

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  23. Ash Nichols8 July 2011 at 12:56

    Too cool! Good luck

    ~ The Tuckerbag ~

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  24. PROF.ROBERLAND@LIGIA8 July 2011 at 13:01

    Alice, somos de Apodi-RN-Brasil, estamos acompanhando o seu blog (Roberland (eu), Lígia (esposa) e Ricardo JR (filho). Adoramos ver você vivendo intensamente, isso nos dá estímulo para nossa luta diária.

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  25. abbott8 July 2011 at 13:13

    Hi Alice - If you ask me, the Prime Minister should be nervous to meet you! Just sent off my swabs for my donor submissions last week; thanks for inspiring me and a whole host of others. I hope when you do finally sleep, you are smiling with the knowledge that you are making this world a better place, each and every day!

    Andrew - Boston, MA

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  26. Bee8 July 2011 at 13:46

    Hi Alice, I've only just started to read your blog, it is extremely inspiring. Just wanted to say; you have nothing to worry about when meeting the PM. Echoing the advice above; just be confident and know what you need to say and you'll be fine! Good luck.
    I hope your surprise is fantastic!

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  27. Anonymous8 July 2011 at 13:46

    Glad you enjoyed your holiday and enjoy eating loads of chocolate at Alton Towers. Also good luck with meeting the prime minister next week am sure you will be great!

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  28. Anonymous8 July 2011 at 15:24

    The PM is probably nervous to meet YOU! :-) You are amazing. I'm so glad I found your blog and have gotten the swab kit and sent it off to be a bone marrow donor. Might donate a kidney too, just for you...

    With much love and light,
    Amy, across the sea

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  29. Olivia Hein8 July 2011 at 15:30

    Have fun in the chocolate room and I'm sure you'll do a great job with the Prime Minister!!

    ~Olivia from Chicago

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  30. Kathleen8 July 2011 at 16:01

    Thanks for continuing to update your bucket list. I know it must be difficult, especially when you're tired or not feeling well. I love that so many people are following you. You set a wonderful example of how all of us should try to live our lives. I love following your latest adventures and am still hoping for lots of pictures! I think the PM will be in awe of you and should be more nervous about meeting you than vice versa. If he's not in awe of you, he should be! You are accomplishing so much and are an example of what is good and right in the world. Enjoy your iPad ... I'm envious!

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  31. Unknown8 July 2011 at 16:21

    I hope you have fun at Alton Towers! And I bet you'll be brilliant meeting the Prime Minister!

    Vicks on your feet is brilliant for sleeping - I do it all the time!

    Have a lovely weekend!!

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  32. Unknown8 July 2011 at 16:24

    Have a GREAT coming week, you deserve it :-)

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  33. Tracy8 July 2011 at 17:24

    Alice,
    You are amazing and I'm delighted to have found your blog. You are now my heroine of courage and happiness. I can't wait to read more.

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  34. johnsonmallath8 July 2011 at 18:17

    MY DEAR SISTER, IM JOHNSON FRM INDIA..INDIANS R VERY HOPEFUL PERSONS..SO IM GLAD TO SAY ONE THING TO U MY DEAR..U WILL BE THE NEXT GREAT PHOENIX BIRD..FLY EVERYWHERE AS A BEAUTIFUL PARROT..PARROT IS MORE BEAUTIFUL THAN ANY BIRD..U R REALLY BEAUTIFUL...CONSIDER ME AS UR BROTHER....MY REGION IS KERALA..LAND OF TREES, LAKES, RIVERS, HILLS ETC....BE CHEERS..BE MY LOVELY SISTER FOREVER...PLZ SEND ME A MAIL TO JOHNSONMALLATH@GMAIL.COM..WITH LOVE JOHNSON

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  35. johnsonmallath8 July 2011 at 18:20

    MY SWEET ALICE.....BEST WISHES TO MEET PM

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  36. Scott Grayban8 July 2011 at 19:02

    I don't what to say but God has a plan for you, whether it's in death or life. Just remember that He loves you and your family.

    Scott from Spokane, WA USA

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  37. ctkmlk8 July 2011 at 19:21

    You do know, my bella, that you are breathing more 'joy and life' in your days, whether you have 1000 or 10,000 remaining, than the oldest, wisest, and wealthiest prune that ever lived. You are truly an inspiration and your life the rarest of gifts.

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  38. Sreedha8 July 2011 at 19:49

    Dear Alice,

    Happy to see your post..Wish u a great weekend surprise..Enjoy..:-)Waiting for your updates at chocolate room and meeting with PM :-)

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  39. Rhona8 July 2011 at 19:55

    Alton Towers sounds yummy :)

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  40. Kath Hahn8 July 2011 at 20:21

    Hi Alice - glad to hear you're getting some better sleep :-) I recommend camomile tea too.

    I joined the bone marrow register for you.

    My friend Ben and I have been following your story for a while. I tried to get Ben to join the register, but he was already on it. We wanted to do something special to make you smile but you seemed to be getting so many offers to fulfill your bucket list. Instead we tried to think of something not on your list that you would enjoy but you might not have thought of. We figure every girl would like to have a song written for her. Ben just happens to be a singer/songwriter so he's written a tune for you. He's asked some other muso friends to come and play and sing it for you (because Ben sings mostly sad stuff and his voice isn't really suited to this happy song!!). They are going to record it for you on the 25th July at a recording studio in Stourbridge. We would like to invite you, Milly, Vicky and your dad to come down and watch it being recorded (and I'm sure you could join in and get yourself recorded too!). It's an interesting process and you'd have lots of fun doing it. Please tell your mum that this is to be a one-off recording, given with nothing but love, just for you and your family to enjoy. There won't be any publicity. (Though if you did want to take it any further and try and raise some money using the song then Ben will donate the rights to the charity of your choice.) If you can't make it down then we could film the recording for you if you'd like? My email address is khahn@tiscali.co.uk if you'd like to contact me to arrange to come. If not we will send the finished CD to your Post Pals address. I hope it's something you will enjoy.

    Much love and strength to you and your amazing family. Keep smiling that beautiful smile chick.

    Kath (a Chetwynde mum)

    PS WELL DONE MILLY FOR RAISING SO MUCH MONEY ON YOUR RUN!!!!

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  41. gitboxjoe8 July 2011 at 21:20

    Angel in our midst

    Theres an angel is our midst whenever we walk about
    here to help us get through each day with love
    We can cry in pain or we can cry in joy
    either way they are waiting with a lovely hug

    Theres an angel in our midst that will never judge
    here to give us all the good feelings they can
    We can be upset or we can be down
    either way they are here to help us stand

    Be Strong Alice!

    EdJones

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  42. gitboxjoe8 July 2011 at 21:21

    Angel in our midst

    Theres an angel is our midst whenever we walk about
    here to help us get through each day with love
    We can cry in pain or we can cry in joy
    either way they are waiting with a lovely hug

    Theres an angel in our midst that will never judge
    here to give us all the good feelings they can
    We can be upset or we can be down
    either way they are here to help us stand

    Be Strong Alice!

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  43. AIDA'RADICAL'8 July 2011 at 22:31

    Alice :)
    Hey, I'm from Mexico, and I discovered your blog :)
    I never learned something like you write before.
    I don't really know you but that's what you write it's beautiful :) Thanks for shared with the world. I hope you see my blog (I wrote a note where mention you) and I hope you'll like :D
    Bye, write you soon :D

    http://agoodfighter.blogspot.com/

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  44. MotorizedMillie8 July 2011 at 23:01

    WOW! The chocolate room sounds like my kind of place as i love chocolate too....well except for white chocolate.....yech! lol

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  45. fendawg8 July 2011 at 23:13

    Hi Alice, I hope by the time you read this you've had your surprise, and it was an amazing one.

    Don't be nervous about meeting the Prime Minister - I've met two, and they're pretty well house-trained really :D

    And, just between us, there's a little tradition that you must keep - make sure something with the 10 Downing Street logo on it (pen or something) "accidentally" falls into your bag or your pocket!

    Hope you enjoy the Chocolate Room, I heard from a friend who stayed there it's amazing even if you're not a choco-holic!

    Thanks for updating, your posts really do manage to brighten every day.

    Tim

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  46. Anonymous8 July 2011 at 23:17

    LOL. I really like that you said "write it down and hand it over". I'm sure writing it down will be helpful and I think once you get going, you'll be fine :-D. Sorry for the difficulty of going thru such challenging times. I enjoy your posts and am keeping you in my prayers. Blessings, Diana

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  47. Anonymous8 July 2011 at 23:18

    BTW, I'm going to have to look up the chocolate room thing. Never heard of that.

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  48. Jacqui8 July 2011 at 23:25

    You are doing so well. Enjoy all the chocolate and don't worry about the PM, he is no different to you or me. I'm sure he will try hard to make you feel comfortable . X

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  49. MJ8 July 2011 at 23:42

    Hi Alice,

    I hope you're feeling better by the time you read this. Have fun with your surprise this weekend and your stay in the Alton Towers. And don't be too nervous about meeting the Prime Minister, he probably gets nervous meeting new people too!

    Some great personal news that I wanted to share with you is that my cousin received a successful bone marrow transplant today. His dad was able to donate two liters, and we're all hoping that it makes him better! Operations still scare me, but it really does make me want to register as a donor.

    Good luck with everything!

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  50. Squiresy9 July 2011 at 00:02

    Have an amazing time in the chocolate room! SPREAD THE WORLD ABOUT BONE MARROW! Your a very inspirational girl:) Tell the prime minister i said hi!
    Love from Tara in Nottingham, England. x

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  51. Heather9 July 2011 at 00:12

    Made my husband swab his cheeks, he was not sure but wait till I get my entire school staff to do it:) Maybe even the county!!!! YEAH! Way to go you are an inspiration. I wish Disney US would feature you to show young kids what they can accomplish!!!

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  52. mancjohn9 July 2011 at 00:36

    What you are doing Alice is fantastic, I have now helped over 20 people sign up for the bone marrow register, my aim is for 50 :)

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  53. Jin9 July 2011 at 02:58

    Alice, you are such an inspiration! Best of luck with your meeting with the PM, you'll do great!

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  54. Kira9 July 2011 at 05:02

    Have fun with your surprise! And don't be nervous about meeting the Prime Minister. I know I'd be nervous, too, but all you have to remember is that he's a human being just like everyone else. Just be polite and be yourself. That's the best thing to do. It should be no problem, as being yourself means being a very sweet and awesome young woman! ^-^ Take care, and glad to hear you're sleeping better!

    ~ Kira ~

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  55. Shinygirl9 July 2011 at 09:24

    SQUEeeeeEEEe! I love a good surprise! I hope it was wonderful and I can't wait to read about it.

    SO glad you're getting better sleep at the moment. Beauty sleep is of super importance. Not that you really need it gorgeous girl. I'm sure the photos are lovely too. It's important to keep these snapshots.

    I know I keep thanking you, but thank you again for everything you're doing, you're an amazing young woman. I'm sure your Mum is overwhelmingly proud of you. x

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  56. Bernie9 July 2011 at 15:10

    Hello sweet girl, what a great time you are having and I am so pleased for you.
    Now isn't the PM lucky to be meeting you, you will be so refreshing and uplifting for him. Oh that chocolate room sounds magnificent and I drool just thinking of it. Hope your surprise is lovely, have a great weekend....:-)Hugs and prayers from Canada

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  57. Gerb9 July 2011 at 15:42

    Alice, you have inspired me to register as a bone marrow donor and to make the most of every single day. Thank you for sharing your positive spirit with us. ((((Hugs from America!))))

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  58. KAMDHEEN9 July 2011 at 16:29

    you are not someone special, but you are special. you are fantastic you have a wonderful personality. you are strong and all people should learn from you how to live the way you are.

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  59. Anonymous9 July 2011 at 22:44

    Have an amazing week Alice! I'll look forward to reading about your adventures!

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  60. chatmemore11 August 2011 at 22:32

    Hi Alice,
    I hope you are ok you haven't posted in awhile. Thinking about you and the new discovery about fighting cancer with gene therapy. I hope you can benefit from this new finding.

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  61. Christina12 August 2011 at 10:43

    Hi Alice just wanted to say that I have 30 Application packs from the Anthony Nolan Trust and i hope to get them all filled in then request some more. I have also written to the Blood Doner Services for them to ask everyone who is a Doner and under 49 to be made aware of the NHSBT as i feel they should make it obvious that they can be a registered at the same time as giving blood. They should make it as easy as possible as people have good intentions but just can be lazy and if it becomes easy more people will do it. Hope your having a fab holiday. Love Christina xxx

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