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31 December 2008 @ 09:14 am
Day 547 - Wednesday 31st December, 2008.  
What a year! It's not all been bad... 2008 saw us coming home for good, it was filled with hope that Kyah was in remission, we got five fantastic months without any major treatments or illness, she got a few months without the need for her 'wiggles' or her ng tube and most importantly, we got to see what normal was like again.

While I'm looking ahead to 2009 with my fingers crossed that it HAS to be a good year in comparison, I can still reflect back on the last 12 months and smile - we really did have a lot to be thankful for.

Everything has an ending.  For Jason and I, it seems fitting that we close this particular chapter of our lives on the last day of 2008.  Kyah's Journey has brought a network of people together and you have all found a common bond through her - love and appreciation.
I ask that you share with us your most favourite memory of her, whether you knew her in person or not.  They can be private messages that won't be unscreened or they can be shared with the world.

The one that stands out for me was one night in Ronald McDonald House.  Kyah refused to go to sleep so I ignored her and came on here to update.  She gave me a few minutes of peace and then proceeded to play "boo" with Giraffe. I started laughing and once I had her attention, she yelled out to me that she wanted cuddles, so I jumped on her bed and we both dissolved into fits of giggles.  I remember her arms wrapped around my neck as she laughed and laughed.

Take nothing for granted.  We got to spend  three magical years with our butterfly princess and while it was not nearly long enough, we have thousands and thousands of special memories to treasure.

Thank you for reading and for supporting us.  What started as a means of communication for friends and family and a document for myself has turned into an amazing tribute.
Look out for the book :o)

With all our love,
Shanell, Jason, Kaleb, Jordan and Kyah

(Anonymous) on December 30th, 2008 09:07 pm (UTC)
All the very best....
While I have never met kyah and her amazing family, I will take away with me the knowledge and life lessons that you have all taught me. I will treasure every day and treat it as my last (the song "Phlex" from Blindspott comes to mind).

Your darling angel has taught some truely amazing lessons in her life. Someone so tiny with the heart of a lion and the courage of a giant, will always have a place in my heart. I thank you Jason and Shanell for sharing this painful yet inspirational journay with the world.

I look forward to purchasing your book Shanell - would it be okay to ask that you keep us posted, whether it be through this journal or another, on the progress of your book? I want to make sure that I dont miss out on a copy of your story, written with so much talent.

All my love to you

King Country
(Anonymous) on December 30th, 2008 09:29 pm (UTC)
It has been part of my routine for such a long time to log in an check to see the updates. In a way I will miss it.

I have been lucky to have lots of good times with Kyah. Remembering back to when she was tiny-wee and being passed around with all the whanau in Pauanui, visiting the Mount at Christmas - with the chicken pox, coming up at Easter(I can't believe it was not even a year ago), visiting in Wellington and getting cuddles, talking on the phone saying "Hi Manny!" Best of all, my time with Kyah and Shanell in Christchurch. Lots of one on one time - so very lucky. Shopping for her 2nd birthday present in Pumpkin Patch (I would have bought her anything she wanted!), going out to lunch and her eating all my pasta :-). Playing at RMH and me freaking out with her climbing up on the ladder all by herself!

I missed her at Christmas, I will miss and love her always.
M xx
(Anonymous) on December 30th, 2008 09:55 pm (UTC)
Shanell, Jason, Kaleb & Jordan
Thank you all so much for allowing the world to share in your family's amazingly touching journey with your gorgeous butterfly princess. She and you all have taught us all how to be more 'human' - she is dearly missed even though most of us never had the emmense pleasure of meeting Kyah. You are always in my thoughts and every time I look skyward I am reminded of Kyah with the beautiful bright stars........she will always be with you, always.
I wish you all the most amazing 2009 and beyond - I will miss this daily part of my life checking in on you all seeing how things are coming along, I will miss you all. I cannot wait to see your book Shanell - it will be a best seller you wait and see.......
A very happy new year to you all and may everything wonderful be in store for the 4 of you - forever.
Again my thanks to you all (that just doesnt cut it actually but I dont know how else to say it) - please dont take this as weird but my love to you all, you are kind of like family to me now......I will forever think of your family and smile every time I do!
Lots of love and hugs and courage and strength
Take care and so long..........
The LB's from Dunedin xxxxxxxxxx
(Anonymous) on December 30th, 2008 09:56 pm (UTC)
Thank you so much Shanell & Jason for sharing your precious Kyah's journey with us.
I have never met any of you although I wish I had. Your family are truly an inspiration of strength, love, integrity and support for one another. You all inspired me to work harder for that with my own family.
I was taking my children for granted and not engaging with them. I knew how lazy I was being but couldn't summon the energy or motivation to change it.
Your journal woke me up and made me realise how much I was missing out on. How much I have to lose, and more importantly, how much I have to gain by changing my attitude and remembering what a privelidge it is to be a mum.
All the way through your writing, you have both sounded so very grateful and proud to be parents to your children. Your love for them all just shines through, even when you're writing about difficult behaviour.
I'm rambling and not being as articulate as I'd hoped to, but I really just wanted to let you know how very grateful I am to you both for making me see how much I had to be thankful for and how precious my time with my children is. I've always loved them to bits but I'd stopped enjoying my job as a parent. I'm so thankful for your inadvertent help in changing that.
There are so many things that stick with me about Kyah.
You often wrote about her enjoyment of simple pleasures and routines. Making bread with Daddy, showers with Mummy, going shopping.. things that are so easy to do and so special for you guys.
Her gorgeous open face, in so many of the photos she is just lit up with happiness, despite all that was going wrong in her world.
She won me over and stole my heart. I hope its okay with you that she'll always have a place there.
Much, much love to you and wishing you all kinds of luck and happiness in 2009. Thankyou, thankyou again. I look forward to reading your book in the near future.
I look forward to

(Anonymous) on December 30th, 2008 10:18 pm (UTC)
Wow girl...you never cease to amaze me. I have followed this blog since you started it and I have laughed, cried and sat in awe of your families strength and courage.
The photos of you precious angel are truly something to be cherished...such a BEAUTIFUL little thing with knowing eyes. There is no favourite memory for me...everything you write is so full of emotion, intelligence, bravery and love. You are a very talented woman and I am so looking forward to reading your book.
Take care Shanell and family as you tackle the New Year head on and look forward to the great things you will accomplish as the awesome family you are.
Kia Kaha
Debs xx
(aka, doobiedoo)
(Anonymous) on December 30th, 2008 10:18 pm (UTC)
My most favourite memories are not really in person ones, because we didn't get to see each other that often in person, but so many laughs that I shared through your journal updates. When I looked at the range of photos more recently that I worked on, I saw a little girl with a mean fighting spirit and my favourite one is that beautiful little smile where she was nose tube free. I love that one. Actually I love all of them. So much so that I had a dream one evening where you walked through a door and Kyah was right there next to you. She didn't have any tubes and she was smiling and she was running around. Jason was there too and he had this thick photo album with him. Not sure what the dream meant or if it was just a combination of memories all thrown together. But she looked happy, she looked carefree, she looked like any other little girl.

I'll never forget her determination to be part of her birthday party and insistence to go onto the jumping castle.

I'll never forget that curly-haired little girl we first saw at Wellington hospital at the beginning of both our journeys.

Shanell, I will miss your updates so very much. For such a long time your journey was part of my daily blog reading. I hope you won't stop writing, you really have talent. But maybe 2009 can bring a new journal with a different focus perhaps? I'm just hopeful I guess. When I come across blogs and journals there are always a small number that I just have to get back to day after day after day and this one was one of them.

I wish you and the family all the very best for 2009, I sincerely hope and pray that 2009 will be a beautiful, exciting and fun-filled year for you. Please do stay in touch!

Lea White
(Anonymous) on December 30th, 2008 10:19 pm (UTC)
Tribute to Kyah & her family
I have had the priviledge of getting to know a beautiful, courageous and fun filled little princess - Kyah. My most precious memory is when I saw the photo of her making bread with her dad. Her concentration was great and she so obviously enjoyed it. My greatest priviledge was being part of "Kyah's army" - sharing with the most amazing family Kyah's journey which became our journey. I learnt to take time to "smell the roses" and I learnt to anpreciate every opportunity life gives me. I certainly gained a huge appreciation of child cancer. I also meet two wonderful parents Shanell & Jason - Shanell you are a natural author and have the ability to bring people together. Jason - your strength and insight is amazing. To the boys - you have been real heros - you will be terrific menin the future. I look forward to the book and will follow the fundrazor website. May 2009 be all you desire. All my respect, support and love and butterfly kisses to our angel Kyah & her Polly Pockets- Judi (Nana of 3)
(Anonymous) on December 30th, 2008 10:21 pm (UTC)
Thank you all so much for sharing your story. You have opened my eyes and i will never forget little Kyah or her amzing family. Take care.
Lots of love Ang
(Anonymous) on December 30th, 2008 10:24 pm (UTC)
My memory
I stayed away from this blog for a long time. People were talking about it on TM and I just didn't want to be "witness" to what I knew must be such an excruciating time for your family.But then it seemed very smug and very selfish not to be aware of what was happening. The first time I read this blog my wee girl was only a few weeks old. She was on my lap/shoulder playing with the tears as they fell. When I turned on the video link she was leaning fotward trying to chat with Kyah-laughing at Madagascar! Facing up to the possibility of losing my children has certainly made me more patient, more loving and more determined to work hard to be the best parent I can be. Thank you for the reminder.
Love and strength,
Anne-Maree amo6tmmb
(Anonymous) on December 30th, 2008 10:37 pm (UTC)
Shanell, Jason, Kaleb and Jordan
Thank you so much for sharing Kyah's amazing journey with us all. Although I never got the honour or meeting Kyah, she stole a place in my heart and saddens me to know of the suffering she went through. She was so brave throughout and has taught me so much, something I will never forget. My favourite memory of her is the wee video you posted of her watching Madagascar and laughing, it was just so precious, and I got to see a glimpse of the 'real' Kyah (if you know what I mean). I can't seem to find the words I need today, but your strength has continued to astound me, you are an amazing family!! I truly hope you have an easier 2009, and look forward to seeing your bald head too! Once again, thank you for the privilege of getting to know Kyah and yourselves, I will continue to send lots of love and ((HUGS)) your way Selena - j.m1
(Anonymous) on December 30th, 2008 10:42 pm (UTC)
I checked in to wish you all the best for 2009. May the future hold great things for you all. Your story has truly made us all realise just how we can't take things for granted and to appreciate and cherish what we have. To always see the glass as half full. Thanks for making your story available to everyone. I'll miss hearing from you. I hope we get to keep up with your news somehow, maybe with a new journal. I'll keep a look out.

I never met Kyah personally so only know her through your words. But I still can't help laughing when I think of the rather unfortunate trip to the grocery store when you were accused by Kyah of being a "horrible child" and told to "shuppup". And I smile when I think of her saying "don't tell me to shoosh" when you were comforting her. But I think my favourite memory is the one where you were snuggled up in bed and she said "I wuv you Mum". That one just says it all.

With love Mel (Mum from Chch) xxxx

(Anonymous) on December 30th, 2008 10:44 pm (UTC)
A memory to share
I never met your beautiful princess but my favourite memory would have to be her request for sandwiches, porridge or crumpets in the middle of the night. I will never forget your beautiful girl and think of her and smile everytime I see a giraffe or a butterfly. Look forward to seeing your bald head Shanell and to getting your best-seller when it comes out. Much love, strength and best wishes for 2009 for all of you

Love from a distance from some dorklanders - Megan, Dean, Peyton & Hunter(due march 2009) Hildreth xxx
(Anonymous) on December 30th, 2008 10:45 pm (UTC)
Thank you
Thanks to all of you Shanell, Jason, Kaleb, Jordan and Kyah for sharing this special journey with us. The strength and courage you and your family possess is truly amazing.
While we never met Kyah, she taught us how precious life is, how special the small things are, and how blessed we to have our children.
I feel silly writing this but, on Christmas day I opened my bedroom blinds to see a single bubble floating around the garden. Now I assume a neighbouring child was given a bubble machine for Christmas, but it made me think of Kyah and the new found gratitude I now have for my family and the simple pleasures of life.

Wow - the affect your daughter has had on so many peoples lives!

I wish you and your family all the best for 2009 and for all the years to come.

S, M, E
(Anonymous) on December 30th, 2008 10:47 pm (UTC)
Having never meet any of the family
I guess one of the memories would be finding this blog and watching the journey. Kyah and my daughter are the same age and I found this journal a way of making me appreciate those around me. Especially the 3 year old tantrum thrower. Thank you for allowing me to be a part of the journey. Best wishes for 2009 - whatever you decide to do Shanell and Jason = the best of luck to you both.
(Anonymous) on December 30th, 2008 10:48 pm (UTC)
I have a giraffe!!!
He sleeps on my bed during the day while i am at work.
And everyday I pick him up to put on my bed and he reminds me of Kyah and how much she has changed my life.

I really dont know what to say except thank you and even that doesnt seem to be much.

If and when you decide to publish Kyahs Journey, i would love to know!! I will definately be in line with thousands of others to purchase it.

Shanell & Jason, your family has changed so so so many peoples lives and their way of thinking etc, to publish Kyahs Journey i think would change even MORE peoples lives and help others who may be going through something similiar? Also, if it helps i rekon a diary form book would be AWESOME!! hehe i really enjoy reading diary styled stories.

Anyways, im rambling, i dont really know what to say excpet love and hugs for you and the whanau.

Always in my heart and thoughts,

Lanii1 (TMMB)