1 January 2013

Happy New Year

Can't believe that I'm really saying 'Happy New Year' to you all.  I don't think that there is a single doctor that would have expected me to be here when they sent me home over two years ago (although i have had a fair bit of help in keeping going LOL). Anyway, I did promise that I'd do an update …

I've only really managed one really good day in the last month and that was Christmas Day, so I don't know if that says it's in my head or if it was just luck, but it was the right day to have a good day LOL.

I'm on my mums laptop (which is a mac thing and really difficult to use) so I can't put the photo on here, but if you follow me on facebook, there's a photo of me on Christmas Day with all my dotty stuff. I was so pleased and have a whole dotty bedroom now and even a dotty iPod player / radio. Not on everyones list but I do practically live in my bedroom!

I'm not eating as much as I should so mum and dad keep making silly things with my food … yesterday, for lunch I got a bagel with Babybel eyes on top and french fries sticking out the sides of the bagel … that was their idea of a spider.  I am beginning to think that we are like care in the community and that they need looking after too LOL.

Thank you to everyone who has being leaving me messages on my facebook wall. I do read them all but sometimes I'm just too tired to start replying to everyone. Someone wrote that I can get my iPad battery looked at and make it last longer so thank you for that. My laptop is too heavy in bed but my iPad battery has been losing charge really quickly so we're going to get that sorted.

This month (that sounds good) my charity caravan will be arriving and I hope that I'm going to be well enough to go and spend the first night in it and pretend that I'm on an Alice's Escape LOL.  Mum and Cathy are planning all the bits for inside and figuring out the games system and TVs for it.  I'm so excited about this happening because every time I plan something, I always think that I won't be here to see it happen and then I am! So I'll try really hard not to pop off in the next few weeks and then I can be at the open day we're planning! Mum is busy planning another trip up Kili - she didn't quite make it last time and so she said she won't be beaten and she's going back again in October.  She's also hoping to do her training for Anthony Nolan and start running information sessions in work places and schools and colleges around here and then doing a clinic to join people up after she's told them all about it. It would be really good if I could just get a bit better and go to some of them with her. It seems to make people really think about it when they see me there, and realise that they might get the chance to save another me.

I'm back down to hospital tomorrow and Mum has told me that I've GOT to have another NG tube in, to see if she can fatten me up a bit. I know that it will help, so I'm okay with it, but I just don't like them and they make people stare at you even more.  Other than the fact that I'm really tired and funny lights still bother me, I feel a whole lot better and the lumps in my neck have actually gone down again. So, my New Year mission is to get a bit fatter which will hopefully give me more energy!

Oh and I want to say a special hello and Happy New Year to everyone back at Alder Hey because although I'm down at the Royal Marsden, I don't want them to think that I've forgotten them all.

66 comments:

  1. Good to know you're feeling a little better. I hope you get fatter and stronger very soon my dear.
    Love,
    Regina

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  2. Happy new year sweetheart keep on fighting and go on gain some weight and dont worry if people stare just ignore them after all its them with the problem such an inspiration you really are big hugs xx

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  3. I love the picture of you with your dotty things, you look really cute.

    I hope you are feeling better - good nutrition might help here so well done on accepting the ng tube.

    Not sure you will make 'fat' you might make "something more like an appropriate body size" But work on fat - it's a goal :-)

    cheers

    storm

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  4. hi
    Actually I am sitting somewhere in England and I have found your site while looking for bucket list for myself; I am not sure what should I write; Of course I wish you all the best!

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  5. Happy New Year Alice, from Kentucky, USA!! I'm so happy you're feeling up to updating and that you're still with us. :) What a blessing you are to so many people. I pray for you daily. Eat plenty and start feeling better soon :)

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  6. Happy New Year 2013! Keep defying the odds! Love the dotty stuff.

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  7. Glad to read your blog and good to know that you are still doing your thing. I have had a NG tube in the past and I didn't mind it either, although I had to cover the connecting container as it freaked out my friends. Happy New Year and looking forward to reading more of your charity and adventures. I loved your dotty bedroom stuff, too!

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  8. Happy New Year, dear Alice from your friends Hope and Brian and Simon the bad Westie in NJM, USA! Your post made my day. No popping off for you- you're definitely going to try out that caravan. xoxo

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  9. Stay strong, Alice!! You inspire me so much! All my family is wishing you a very happy 2013, and we hope we can say next year 'Happy 2014, Alice!'. We love you!

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  10. So nice to hear U R in such great spirits, I pray in some small way the world is helping U, giving u strength where U need it?? We all in the USA hope U know we would do anthing in the world 4 U,,never be afraid to ask 4 our help. Tell mum we R grateful 4 the up dates,, She is 1 in a million,,like U & ur sister,& dad. God bless U & keep U safe,, Naughty me.

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  11. So glad to hear the positivity in your post Alice. I will be thinking of you often over this next month, and encouarging others to do the same. Much Love, Courage and Strength.

    Alan

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  12. I tried to post a comment earlier from my iphone (it was a good one) and it didn't take it, so here goes another.
    You are an amazing soul and beautiful young woman. I love your blog and your zest for living your life fully right now. You are an inspiration.
    Thank you for sharing with us and for keeping us in the loop. I know that gaining some weight will make you feel better and give you more energy. Its just the way it works :)
    Sending a New Year hug your way and ridiculous amounts of angel love.

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  13. Happy New New, stay strong and always smile, even when it's difficult xxx

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  14. Hope all goes well Alice. Fattening you up will certainly help your energy levels, and you might feel a little less tired. I saw the photo you posted on Facebook, it's lovely.
    I am amazed at your Mum's courage and stamina, and I wish her well too for the coming year.
    I signed up years ago with Anthony Nolan trust in my early 30's I think. I am probably now too old to be a doner but I think it is an amazing cause.
    Have another great year xxx

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  15. Happy New Year, I hope that this is a good year for you and the family and all your ventures. Keep smiling because you light up the world with your smile and inspiration xxx

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  16. Dear Alice, I am so pleased you had a good Christmas Day and hope that there will be more "better days" ahead - as always, your courage and determination will carry you forwards.

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  17. Happy New Year Alice!
    Every time I read your blog, tweets and status updates, I'm filled with such emotion: awe, admiration, respect, compassion, hope. Your updates make me smile, and cry a little sometimes too.
    I'm so happy for you and your family that you have achieved and experienced so much in your life. I have a daughter the same age as you and I'm thrilled that you have been able to do some of the same things as her - go to prom and see Take That.
    Although I have never met you, I feel like I know you and I think of you often.
    Stay positive and keep fighting, who knows what might be around the next corner.
    Much love for 2013
    Alison xxxxxxxxx

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  18. Sending hugs and prayers - always.

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  19. HOORAY! You've made it to 2013! Happy New Year, Alice! Sorry you had such a rubbish December, fingers crossed that all goes well with the dreaded ng tube, and that January is a much better month for you. I really hope you get your "Alice's Escapes" night away- that will be amazing, after all your hard work fundraising for the caravan. Love and very best wishes, Wendywoo x

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  20. Happy New Year Alice to you and your family!! xxx

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  21. Happy New Year Alice, you truly are an inspirational young woman. Hope all went well at hospital appointment and the NG tube is in and not causing you any bother.

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  22. You have a lot to look forward to this month! I like the way your Mum has been jazzing up your food lol, she sounds barmy (but in a good way!)

    Happy New Year Alice

    Janine XX
    BakeGlueandTrend

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  23. Happy New Year sweet Alice....lots of love and prayers going out to you from Cleveland, Ohio, USA ! Stay strong sweet girl......

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  24. Yeah!!!!!! you got Christmas Day xxxxxx

    Love you big lots Small Pynie hope to see you soon xxxxxxx Sammi B

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  25. Alice, you are inspirational. You have such amazing strength of spirit. Here's to more happy times ahead for you in 2013. x

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  26. Happy New Year Alice! I'm happy you at least had a good Christmas. Registering for bone marrow donation tops the list of resolutions this year for my wife and I. Best in 2013.

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  27. So good to hear from you! Can't wait to see pictures of you and your first night in the Caravan. You remain in my thoughts and prayers as I continue my pleas for our bone marrow donation registry in the states.

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  28. Happy New Year! I hope you have a magical night in your Caravan! :)

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  29. Happy New Year Alice!! So happy to come here and catch up with you. Praying for you!! Hope your Mom succeeds in fattening you up and you get more energy.

    Blessings from across the pond,
    Mallory
    Gainesville, Florida, USA

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  30. Hello

    To make your NG more interesting you may want to look at this tape. http://www.kidshopechest.com/feeding-friends-stickers.aspx my 27 year old friend uses them with her NJ tube and they get more comments than the tube

    x

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  31. I remember starting to read this blog when you were 15 and was just amazed at your spirit. Two years later, here we are and you are still as amazing....actually even more so by quite a lot. I wish everyone had the same spirit as you, it would make the world such a better place.

    -Much love from Michigan

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  32. Good to hear from you, Alice. Happy New Year! Take care and keep fighting :)

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  33. You cannot believe the stupid grin on my face when I saw your update. You're amazing Alice xx

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  34. It's beautiful to hear from you gorgeous girl. I'm so glad Christmas Day was good for you and I want so many good days for you! Your spirit is magnificent.

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  35. Here's to a 'fatter' Alice in 2013!!! Glad you've 'chosen' to be here to wish us a happy new year. Hope you get the iPad sorted out so you can be more comfy.

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  36. Hey,
    Happy New Year Alice.
    Following your blog almost makes me feel like I know you. Lol.
    I hope you get to see your caravan and I hope it's everything you imagined :D

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  37. I love spotty. I just bought some spotty duvet covers so I think we must both be on trend!
    Tell your mum from me that I think she is pretty amazing. I would love to be able to say I climbed Kili but I know it's not something I would manage right now. In the meantime enjoy the spider meals!
    Gillie x

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  38. Alice, I read your story on Yahoo news. I don't know what to say I have seen many stories like yours lately. Except that your courage is an inspiration to many. I can only pray that your pain is less each day. You find happiness and peace with ones you love. Give pause, but truly how special you are. The difference you have made in this world the people you have touched in short time and the lives you have saved through your awareness. No it doesn't make what your going through any easier but i do pray it provides comfort to those you love and most of all yourself.

    You are special in Gods eyes so very special and I can only pray blessings and peace in whatever time you may have here but know you have done all He has wanted you to. May God bless and ease both you and your family always

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  39. Keep going strong! Have a great New Year! I wish you all the luck! :-)

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  40. Glad to know that you had a lovely Christmas! i have to check your FB page, you must get quite a bit of traffic there:) Good luck with the eating and do your best;) Bless you in 2013!

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  41. Hey Lovely girl. So glad you're feeling well enough to update.

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  42. Hey there Alice, I just by chance bumped into your blog! From the bits and pieces that I've read from your blog, you sound like a truly admirable and inspiring human being! You have really set out to do what life is about! I wish you all the best in 2013, getting a bit fatter sounds like a refreshing resolution! I realise I'm a stranger, but just letting you know that you're in my prayers!
    Joanie from Australia xo

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  43. Alice, I can't even remember how I came across your blog, but I've been lurking here for months and I just wanted to let you know I love reading your posts. Your positive attitude is so inspirational and I love that you are not afraid to admit you have days when you are down, tired, sick, etc, but you keep going. Thank you for sharing your story with the world.

    Samantha

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  44. Happy new year Alice! You're an inspiration and your blogs are so humbling and awe inspiring! Good luck getting fatter and keep your faith!

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  45. alice, there are no words... you are so strong and humourous in your posts. we are all praying for you and hope you are enjoying all the treats that come your way , i hope the caravan will be fun for you,
    thinking of you!
    ellie xxx

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  46. Hey Alice you might not get to read this as the comment was at the bottom, but I am really inspired by your story and found on your Blog that you go to the Royal Marsden. My form's (8I at Wilmington grammar school for girls) charity for this year is the Royal Marsden. I'm just asking you if it would be okay to show your Blog in the form assembly. I really wish you all the best on behalf of everyone in my form and hope that the money we raise will go to making your life and others at the Royal Marsden a lot better and happier! Love Grace xxxxx

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  47. Alice, I just found you in the last couple of months, and I enjoy reading your updates and praying for you. I'm so glad you had a wonderful Christmas and you are looking forward to your caravan. Don't worry about not responding to people on Facebook or your blog; we just enjoy hearing from you when you can update us on your journey. Spend all the time you can with your precious friends and family!

    Blessings to and prayers for you from Texas, USA.

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  48. Hey Alice! I just found your blog by chance and i've got to say, you are a wonderful, amazing, strong and beautiful person. It holds lots of courage to just say what you are feeling as it is. You are an Inspiration. I promise ill be one of your regular blog visitors! Happy New YEAR!!!! :)

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  49. I've just come across your blog and you have the most inspriring story. You are so brave and I will try to help you achieve some things on your bucket list. I am so glad you had a good christmas and you a amazing girl xxx

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  50. happy christmas to you too! you're such a brave girl and truly inspirational. keep going! :)

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  51. Alice, I hope you're doing well. I wasn't sure if you saw the Twitter feed, but I've finished my Sketchbook Project entry with your portrait. You can see it at my blog here: http://mayersart.wordpress.com/2013/01/11/alice-pyne/

    Thank you for your continuing inspiration.

    With love to you and your family,
    Mike

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  52. Happy New Year Alice! God Bless you!

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  53. Alice,

    So glad to have come across your blog! I wanted to share with you one of my favorite quotes of all time...from one of my favorite movies of all time.

    "Everything will be all right in the end. if it's not all right then it's not the end"

    God Bless!

    Heather (Ontario, Canada)

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  54. God Bless! That could only be wrote by an angel..Fly High Alice xx

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  55. Goodnight Alice. Sleep well with the angels. xxx

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  56. Alice, you are and always will be an inspiration to us all. I hope your family can be comforted in the days, weeks and years ahead in the knowledge that you left your special mark in this world.Rest in Peace your light will always burn bright x

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  57. Rest in peace Alice, you'll be happy forever now.

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  58. What can I say but thank you Alice, you have made a huge impact on so many lives.

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  59. So sorry to hear Alice has gone, but glad she's in Heaven. She touched me when she wrote back to a message I sent her back in September. So positive and so sweet. I will miss checking her bucket list and wondering why I'm not doing as much living as she was but I am so happy she got to do so much in her short time on this earth!
    Much sympathy to her family. I will never forget Alice. Hugs to you all!
    Sheri

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  60. Alice , você FOI uma Guerreira, parabéns por suas atitudes e iniciativas. Que Deus de forças a sua Família e amigos . e que possa olhar por todos ai do Céu, bem ao LADO de DEUS !!! Obrigado

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  61. I wish you to be, healthy, stronger and happy as soon as possible.

    Greetings,
    Burun Estetigi

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  62. Hi Alice!

    I know your an angel now. I am sorry you had to go this way. Lets be best friends when I get to heaven, ok! Thank you for being so strong and brave. Fighting off serious illness is quite hard isn't it. I have 3 rare illnesses, so maybe someday we can talk about it. I would love to meet you. I came across your blog to late to contact you in this life, but we can definitely talk up in heaven. I am positive that you're an absolutely wonderful angel. Even though I just came across your blog, I really miss you already. Sleep well Alice, I promise we'll meet soon. xx

    Love,

    Emily

    age- 14

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