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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

88 comments:

  1. have a lovely week alice. so pleased you had a good time with the prime minister and you got to see the film set and meet the actors. truly wonderful. hope you feel happy and positive all this week. xxxxx

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  2. Hi, dear! How are you? I hope you fell better. I´m still praying for you, here in Brazil. Much love
    Marcella

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  3. My goodness girl. I'd be exhausted after all those hours trying to get the medical stuff done. Besides stressful it's just plain not fun. But I'm glad the PM was able to make you relax and enjoy your time. And what a treat to be on the movie set. Rest well.

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  4. Sounds like you've had a very full (and exhausting!) week! I'm so happy to read about all these people coming together to help you achieve the items on your bucket list. You're changing lives, Alice! *hugs* and hope your energy picks up xx

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  5. I just found your blog through Kyla.
    Even though I don't have terminal cancer (or anything really comparable), I do have liver disease. I was diagnosed with cirrhosis when I was 19 years old. I'm 22 now. I had my second big liver surgery three years ago, and I have been doing very well since then, but I can understand the constant tests checking your health condition, being in and out of the hospital constantly, trying to be a normal person when you know that you aren't ...
    Like I said, it is nothing compared to what you are experiencing, but I always feel an instant connection/bond with a person when I come across someone who is in even a slightly similar circumstance. :)
    I love your positive attitude. I know that it is difficult. <33 I really admire you. Just thought that you should know.

    http://www.glamkittenslitterbox.com/
    Twitter: @GlamKitten88

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  6. Hey : ) you are such an inspiration to everyone put there you are a very strong person and so Is you family and I truly do admire it, I hope you get to do all the things that you wish and dream to do on your bucket list, God bless you and your family my thoughts and prayers are with you all x

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  7. Carole Hogg,
    Alice, Ron and I really enjoy following your blog. I hope you have a great week and just take it easy this week.
    I don't know if you remember, but you visited us in Dallas, TX many years ago.
    Many hugs and love,
    Carole and Ron

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  8. Hi Alice,

    I'm glad your visit with the PM went well. Keep up the positivity through your adventures!

    Good luck with everything.

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  9. Such an exciting life you're living!! KEEP BLOGGING - because I live vicariously through you. I live a boring ol' life as a soldier...

    How was Dakota Fanning?! I adore her!

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  10. Hi sister.. It's always nice 2 read thru ur blogs.. Man, u r gonna b alryt.. U r sucha lovelee innocent girl... n moreover sucha cmpassionate human being.. take care dear sis..

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  11. Hi Alice!

    Sounds like you had a very busy week!! Meeting the PM and going to a movie set must have been so cool. You didn't need to apologize for not posting because we all know you had a very busy week.

    I bet Mabel was glad to see you when you got back home. You probably missed her too. When I had my Brittany's, I missed them horribly when I went away.

    Sounds like you have a quiet week coming up. Sometimes that's a good thing though. You'll have a chance to get rested up and just relax a bit, That's not such a bad thing sometimes!!

    Well, I enjoyed your post and hope to see more soon. I was thinking about you the last few days and wondering how the trip was going. I'm glad it went well!

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  12. What a wonderful time you had! Have the time of your life!
    Hugs and Prayers
    Dee from Nebraska

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  13. Sounds like a fun week, sorry you were so tired. Your mum is right, kids shouldn't be penalized because of where they live. Hope you have a wonderful week enjoying your summer with your lovely family.....:-)Hugs

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  14. Best wishes for a restful happy week! Sending you prayers from California. Berit

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  15. Wow, you had a really busy time

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  16. Hi Alice,
    I live in America, in Texas.. actually, and I just want you to know that you've reached me all the way over here!
    I admire you so much. Your outlook and attitude astound me. I'm a bit cynical, though I try hard to see the glass half full, but it's not so easy and I'm not faced with enduring anything near as tough as y'all.
    Your situation is the toughest I can imagine for both you and your family...
    I hope one day I can find the courage and strength to live my life to the fullest. You are very, very brave and I am sending positive vibes to your and yours.
    Thank you for sharing,
    Sandy

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  17. Hi Alice, I think I've finally figured out how to post on here! I just wanted you to know how much I love reading your posts- you're an amazing girl. I'm sending lots of positive "vibes" your way, hoping that you get a good night's sleep, and that tomorrow is a good day.

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  18. Hi Alice...hope you are feeling more rested now you are home. My mug arrived on Friday and I am thrilled with it! Thinking of you x.

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  19. Alice. I can only hope that if I ever find myself in the same situation as you are that I can cope with such dignity and courage as you are showing x I'm off to make myself a nice cup of tea that I'll be drinking from YOUR mug that's just been delivered!! It's fantastic! xxx Kirsty

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  20. Blimey Alice, I'd be exhausted and I am not sick. Really pleased you're getting to work through your Bucket List.....you're an inspiration.
    Thank you for working so hard for the Anthony Nolan Bone Marrow cause. I joined that back in the very early days and only ever got through stage one, once, and then not recalled. I think I may now be too old.
    Hope your week gets better.
    Kathy (not POW16783, but it's easier to sign with that pseudo)

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  21. Alice, you live a charmed life, and it's wonderful how brave you are. Your family and country love you so much. Just beautiful! Thank you for sharing your life with us.

    Wish you all the best, and some strength and energy to go with it.

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  22. Hi Alice...love reading about your latest adventures which leave me breathless with awe at just how much you are doing. Makes me feel really lazy. Received my mug at the weekend and love it! The design reminds me of my childhood growing up at the seaside....take care you xx

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  23. Hi Alice. I was thinking of you this week and I'm so glad your trip went well. I look forward to your posts.

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  24. Hi Alice,

    Sounds like you had a lovely week. I would have been exhausted too doing all you did. I'm sure the PM was struck by you! I hope you'll be able to get some rest this week.

    Love and hugs,
    Alyson in SC, USA

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  25. You sound very busy!! Hopefully this week brings lots of rest for you. I got your mug in the post and I must say it's better than the picture! It really made my day. x

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  26. You are absolutely amazing. It is wonderful that you celebrate your life and share it all with the world. MANY, MANY, MANY {{{HUGS}}} to you! ☺

    Laura
    US

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  27. Hello Alice! I'm new to your website, and I can tell you that I absolutely LOVE you!! Your blogs are so wonderful, and I feel like I somewhat know you :-) I live in Kentucky, in the U.S and my husband and I have lovely friends in Leeds, Yeadon U.K. Is that awfully far from your home? I really enjoyed reading this post about your adventures in London, and I am so looking forward to all future blogs!! Have a lovely day!

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  28. Positive thoughts heading for you from Romania! :) Hope you have an amazing week! ♥
    xoxo
    Irina

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  29. Alice, you are an amazing young lady! Everyone could learn a thing or two with how you live your life. I am sending thoughts and prayers to you and your family from Saint Louis, Missouri...USA! Keep doing the things that make you happy and fulfilled!

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  30. You are a true Inspiration , big hugs :)

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  31. Alice, Alice, Alice ~ how amazing! 10 Downing St. The PM, a movie set and Dakota Fanning - I'm exhausted and overwhelmed just writing it. What a day and such memories to think about on those nights you cannot sleep. I think a good week just relaxing and getting your strength back is what you need.
    My mugs are on their way to New York, can't wait to see them. One for my office and one for my house.
    Stay sweet the way you are and take care of yourself.
    xxxoo Tracey

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  32. Sounds hectic for someone who is fit...no wonder you needed a rest.
    This film with Dakota Fanning....is it another of the "His Dark Materials" books being made into a film?

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  33. What a wild time! Very proud of you and your dedication. Did you know you story is circulating here in the states? "Be the Match" has a facebook page, and there you are! Was very excited they are spreading the word with you as an advocate. Take care my dear, my very best. Kathe XX

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  34. hello alice, my arms ached in sympathy when you mentioned the cannula, i have exactly the same problem; no veins; and it is so painful when they jab you unsuccessfully. it's okay to tell them you need a break when they're digging away, and it's even more okay to ask them to put the emla cream on first. if they're going to have more than one go at sticking me, i want it to be numb, lol. sometimes it's easier for them to put it in a foot because, as gross as that may sound, the veins there are relatively untouched. don't know if that helps at all, i'm just wittering on...

    i loved reading about your trip to london, it must have been exhausting. your campaigning for the NHSBM register must surely have a positive impact, and i hope that brings you some peace and personal satisfaction. it's great to think about other people, but please don't forget yourself. there's nothing wrong with having a duvet day and saying 'today will be all about me'.

    take care, and take it easy. and just be yourself, because you are genuinely very lovely.

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  35. What a busy week Alice but how amazing to meet the PM. I wanted to let you know I received my Alice mug today and it is fantastic - well done you. I will think of you every time I use it which will be a LOT! Xxx

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  36. Hi Alice, just to let you know that your mug arrived at my house on Friday afternoon, and it is lovely. My mum got hers today, so hopefully you will have yours by now. I hope you get some much needed rest this week. Take care of yourself and know that your words and actions are already making the difference you hoped they would. xxx

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  37. Hi Alice,

    Wow, it's seems you had an amazing experience. I am a nurse here in Washington State and I am so proud to know that you are being treated so well by the medical staff were ever you go. I hope you the best and hope that you continue to have many happy experiences considering all the bad ones that you have to endure as well. Love always,
    Mary

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  38. Hi Alice....Thanks for the update. Sounds like a very busy but exciting week. I am sure that Mabel was pleased to see you home. My Basset hound Hugo is always pleased to see me, even if I have been away for 1hr. I get the same greeting as if I have been away for a week. The Mug arrived last week and it is great! Hope you are pleased with it? Rest up xx

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  39. Keep taking good care, Alice. I'm a bit sad as I learned from my elderly mother that her sister, my wonderful Aunt Aurora, is currently in hospital with late stage leukemia. Mom's very sad knowing her baby sis is ill (she also has late stage Alzheimers) and can't be with her. Thank you for doing your part to help others and give them a chance at a healthy life. You are one of a kind! ~ Lil

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  40. sleep tight alice you did a great job xxx

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  41. Another busy week, sorry you had to spend time at AH, are you Hickman free at the moment? I tried to leave you a message with some iPad game recommendations that Kate w and I lOve but for some reason I couldn't post it.
    Do you have 'game center' on your iPad, Kate does and when I plugged my iPod in it suddenly appears. You can then play against friends (I haven't found any yet that you can play the actual game with a friend) but it has a little leader board and other functions. I only have Kate w on mine and vicer versa but if you would like to become obsessed with pet points and giving pets facials on pet saln (free) your welcome to play with us. I'm vikkilouise1 and Kate is lilacsky (pretty username).

    Re the moonpig details I sent to your personal fb have changed so if you want the new password just shout

    Lots of love

    Viks
    *ps if you can't find me on games center by my username try my email it's an hotmail.com one with fairyviks before the @. Let's hope spammers don't pick it up!

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  42. Greetings Alice!
    Sounds like your trucking through the good, the bad and the ugly with the heart and soul of a warrior!! You impress me every time I read your posts!!! I am really amazed at all the awareness of bone marrow donation sites your posting on FB~ what great work you're doing! Enjoy your week!
    ~Lisa~
    New Brunswick, Canada

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  43. Saw this on you on youtube. :) your famous!
    Have Fun!

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  44. I'm sure your Dad meant "The Royal family". Stay strong, we're all with you.
    I know what you mean about the noise in London, especially when you're trying.

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  45. I'm Glad you had a lovely week Alice. Mine and Mums Mugs arrived today, already had about 7 cups of tea :-) xx

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  46. Yes, Alice, your last week definitely appears to have been veeeery tiring!! Use this one to restore your energy :)

    Have a great week!

    My very best,

    Regina (Brazil)

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  47. helluuuu dear... gud to knw that ur bk... hope ur mdcl stuff will b dne fyn.. nw take rest 4 te week.. i guess ur last week was tiring enough... so have a relaxd week:-)
    tc dear... lodz of luv n prayers...

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  48. Wow, you had quite the busy week. Glad you got to meet the PM and visit the movie set. Just got my mug, all the way out in Arizona, today and I must say it's brilliant. Stay strong and positive and get a good bit of rest. Sending you positive vibes xx

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  49. Hi Alice, came back to check you are OK, and have ordered a mug!
    Give Mabel a pat from me :-)

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  50. Wow Alice, such a busy week (and not all of it sounding good), really hope you're having a good me-time week. Thinking of you often (everytime I have a cup of tea in your wonderful mug, so that's v often!).Hope your's has arrived by now too.Wishing you good sleeps.Love and light xxx

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  51. My Alice Mug Arrived!! It's really lovely - too lovely to just sit on a shelf - I'll take a photo and post it on my blog Alice - take care and I hope you have a restful week - just listening to the cows ;D x

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  52. Just found your blog, look forward to more posts! Take care!

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  53. Oi Alice, bom dia...
    vim mais uma vez te visitar e ao ler o que escreveu, pude notar que vc fala em futuro, como já havia dito outras vezes, nós temos uma esperança muito bonita para o futuro, gostaria de saber qual e como ??

    A Secure Future Under God’s Rule

    SOON our anxieties about the future will be over, for God will take charge of planet Earth by putting in place his own government, called God’s Kingdom. Jesus Christ had that wonderful prospect in mind when he taught his followers to pray: “Let your kingdom come. Let your will take place, as in heaven, also upon earth.”—Matthew 6:9, 10.

    God’s Kingdom will neither cooperate with nor work through human political leaders. Rather, it will eliminate every vestige of human self-rule, as indicated in the following prophecy of Daniel about “the last days,” the time in which we live. (2 Timothy 3:1) “In the days of those kings the God of heaven will set up a kingdom that will never be brought to ruin. . . . It will crush and put an end to all these [man-made] kingdoms, and it itself will stand to times indefinite.” (Daniel 2:44) Those words offer no comfort or hope to people who prefer rulership by man, but to all who desire God’s sovereignty as expressed through his Kingdom, they glow with promise.

    A Wonderful Future!
    When God’s Kingdom rules over the entire earth, its subjects will not be divided by politics, race, religion, or lines on a map. Rather, they will form a global brotherhood united by spiritual truth and genuine love. (John 13:34, 35; 17:3, 17) Yes, under Kingdom rule, “the righteous one will sprout,” and there will be an “abundance of peace until the moon is no more.”—Psalm 72:7.

    Besides these things, God’s Kingdom will elevate submissive humans to perfection in mind and body, eradicating all sickness, suffering, and death. (Revelation 21:3, 4) The result? Our planet will be a paradise in every respect, thus fulfilling God’s original purpose as stated in Eden.*—Genesis 1:28.

    The Only Real Good News
    When giving his composite sign of “the conclusion of the system of things,” Jesus included a particularly noteworthy element. (Matthew 24:3-7) He said: “This good news of the kingdom will be preached in all the inhabited earth for a witness to all the nations; and then the end will come.”—Matthew 24:14.


    The Bible says that there will be an “abundance of peace”

    In harmony with God’s will, in 2007 almost seven million Witnesses of Jehovah in 236 lands shared the Kingdom message with their neighbors, joyfully contributing well over 1.4 billion hours of their personal time to this work. Why are the Witnesses so firmly convinced of the promises contained in the Bible? The answer is really quite simple. As the following article explains, God is always true to his word.—Romans 3:4.

    Gostou do que Deus promete para nós ? lindo né ?!

    abraços...
    danielfritscher@gmail.com

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  54. Alice, I hope you have an amazing time..Your hours may be few, yet you choose to fill it with memories that will never fade. You are my inspiration to start making the most of the life I now have. I am now an avid follower

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  55. Hi Alice !
    I met you at dog training before the show (my husband runs the class). Just wanted to let you know that we have received our mugs and are delighted with them !
    Glad you are keeping busy, you have had some amazing experiences... how cool is it to meet the Prime Minister ?
    Look forward to hearing more adventures from you and remember you are always welcome to come to our class if you want to !!!

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  56. Well done Alice,keep enjoying yourself. I had to have a cannula last week and it hurts afterwards! Have a restful time, recharge, ready for your next adventure
    Sam xxx

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  57. You have no idea what a great impact you are having with this blog. Thank you for sharing. You are a beautiful and brave soul. Much love.

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  58. Hello Alice, I am very touched by your story! I know it is not easy what is happening, and do not wish it to anyone, pity we can not choose which way to go! My father works in the largest children's cancer hospital in Brazil and live with it every day! In college when my friend discovered a lymphoma and all around you have a desire at the top of our list: Let it be cured! I follow your blog every day and I'm rooting for everything to pass, that when you least expect something good will happen! Take care of yourself, is the least you can do for yourself. "You only have one life ... live it!", This phrase serves as a stimulus for our lives. Believe in yourself and make your wishes all existing ... I just wanted to say that your blog has come to Brazil and all who knew its history are rooting for you! Improvements, and have a good week:)

    Kisses...
    You are a brave little girl
    (São Paulo, Brazil)

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  59. Hi Alice, I've been reading your blog for a few weeks but haven't commented yet so just wanted to say hello and thank you for sharing your experiences with us. You write so well and I'm looking forward to seeing photos of all your exploits! I too am addicted to Angry Birds, so it sounds like I need to get myself an ipad! Take care, sweet dreams xxxx

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  60. Hi Alice - just checking in on your blog and to see how you are. hope you can get some rest now you are home. I love the mug and will be ordering one for my son. He has had Ewings sarcoma but is clear right now , although the treatment has left him very ill and he is still in hospital here in manchester- am sure you know how it is ! love Kellie

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  61. hi my sweet sister....i want ur happy smile every day....if god will help me ..i w'd like to see u ...i proud of u little queen.......bii tc..

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  62. Sounds busy, but fun! I bet it all flew by from all the running around. Well take it easy this week, as I'm sure you have more excitement around the corner!

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  63. Olá minha amiga eu estou em Mogi das Cruzes São Paulo Brasil.
    Não sei se vou me fazer entender por você ok.
    Eu estava em uma situação parecida com a sua a 6 anos atrás eu era portador de um câncer muito agresivo,chamado de tumor de partes moles, fui submetido a uma cirurgia grande em minha perna, após tudo isso o medico que me operou o Dr.Ricardo Motta um grande cirurgião , me de a estimativa de seis meses de vida mas a contraio eu estou vivo ate hoje , já se pasarram 6 anos eu eu estou muito bem, tenho certeza que com você vai acontecer o mesmo, em breve você estara bem, um beijo e muito boa sorte para você seu amigo brasileiro M@ndrake

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  64. Alice!

    I'm Lauren from North Carolina in the United States..I just wanted to say that you are such an inspiration! I'm so glad that you are accomplishing so much. Keep a smile on your face and keep believing in yourself! I love your blog . I can't wait to hear all of your adventures! I'll be sending postive vibes your way and praying for ya! XOXOXO!

    Check out my blog:

    Pocketfullofhappiness.com

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  65. Hi Alice

    had to tell you how excited I was to get my Emma Bridgewater cup today designed beautifully by yourself. Here I am in Sydney drinking tea from the cup you designed and reading your blog. Thank you for sharing this with us hope you having a great day as well regards Rhonda x

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  66. you got to meet so many cool people! sounds fun, but tiring, too ::P LOL the part about London being too noisy. one would think you miss the cows, not the silence of your home. have a great week next week!

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  67. I just bet the PM was right nervous himself meeting such a brave and happy young lady who gives lots of smiles to everyone she meets. Even all the way to Virginia Beach, VA!

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  68. du bist eine große Persönlichkeit, sehr stark du kannst stolz auf dich, deine Familie und Freunde sein. Best wishes from Germany

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  69. Hi Alice,

    I hope you're feeling a bit stronger today. Your blog is a great idea, I'm sure your experiences will help many other people. I'm writing from Trinidad and Tobago in the West Indies.

    Take care of yourself and I'll pray for you and your family.

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  70. ;) Right By My Home I Live In Liverpool I wuold've visited you if you'd let me, would've been an honour! xxx

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  71. Hey Alice! I've been watching your blog for quite a while and I am so happy for you that you can fulfill your wishes!
    I hope you have a wonderful time :)
    It's awesome to read about your interesting experiences, I'm always looking forward to new posts.
    Have a good time and kisses from Germany ♥

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  72. i love this blog already! i read the title at the top and it spread a smile expecially when i saw how many viewers you had and you things already done on your bucket list amazing how many people support you and this amazing trip your family is taking you on. YOU GO GIRL! truellly inspiring i'm sure for other people with cancer.

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  73. Hey,
    Keep up the spirit !
    You've put some focus on the improtant issues into the politics, something we could use als here in Belgium.
    Kisses !

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  74. Hello Alice, I have been a regular reader of your blog. I hope you are feeling well and I hope you are doing just what you want. I think you have a lot to teach us, the rest of the world. Wishing you the best from Missouri, USA.

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  75. I hope all is well with you, I've been checking for new posts for the past couple days and haven't seen any... :-( I hope you are able to check some more stuff off your list and are able to be a kid and aren't feeling too terrible all the time. You have truely inspired me to be a better person! Keep your chin up kiddo! :-)

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  76. I am glad you are having fun, still praying for you.

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  77. Not heard anything in a while, hope you are alright

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  78. Hiya Alice,

    We are in admiration of your strength...

    Michel

    Formentera Spain

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  79. Hi Alice! Sorry I've been away for a while. It was really fun catching up on your life. Such a balancing act, with fun, health, and great work for your cause, no to mention family time. I'm on vacation (holiday?) in Okoboji, Iowa, which is on a nice chain of lakes. Not too glamorous, but nice for family enjoyment. It's the simple pleasures, right? We went to candy shop and I thought if you as I bought snag of chocolates. They have jars filled with all sorts, and you get a little paper bag and use scoops to pick your own mix of goodies, paid for by weight. Hope you get to Afton Towers soon. Take care...

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  80. Hi Alice,

    We haven't heard from you in a while, and I really hope you're feeling okay. I just wanted to let you know that you have people all over the world thinking of you and praying for you. I hope you're spending lots of time with your family (including the pups!), and accomplishing some of your goals.

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  81. Alice,you are such an inspiration! After reading your blog, I am ashamed of complaining about little things in life and how we get caught up with it forgetting to live our life.

    My wishes and prayers for you to fulfill everything on your bucket list. Take care and love u.

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  82. Hi Alice, Carina from Gran Canaria here.I linked your blog to mine today, waiting for your new post. Your are very brave. How is Mable?
    Have a nice day.
    Carina

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  83. Sounds like you had a fantastic time!

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  84. I'm guessing you get this a lot but you are so brave, your an inspiration, you truly are.

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