Kira is doing ok right now thanks...full of various chemicals sadly but she's really quite chipper and happy. She has made tons of animated footage from her drawings whilst she has sat around with little energy over recent months...they're really good too, very talented. We have decided to get involved in clinical trials at BCH...if someone learns something new from what Kira has and it helps someone else down the line, then that's a plus in all of this xx

thinking of you and kira more than youd know.
sending you strength and hoping things go well with the trials.
god bless u all

xgx

Had to cut our week long family holiday (many thanks Clic Sargent) short to just 2 days because Kira became so unwell... after 5 days she has now picked up a bit and started to eat again- headaches and stomach pains now at 0 to 1 which is good.

I know everyone on here has desperately sad stories and very real heartaches but having your 10 year old daughter ask if she was going to die because of the 'Candy Floss'(GBM IV) in her head has to be one of the worst scenarios any parents have to deal with...?

She is so brave and wise...how are young children like Kira so worldly? Have they really been this way before...? We have all cried together, laughed together and are daily sad together but at least we can be honest together now and we all know life will go on, we will just be on different paths for a while. It is beyond heartbreaking when your 10 year old, clever little girl becomes tearful because she might not get to be 11... she told us that she will be so glad when she gets to her heaven because she will be able to see properly again (the GBM has taken sight in 1 eye already)... how many children are happy about such things...?

Where does all of our strength keep coming from? I am amazed by us all...

xx

I believe everyone that logs in on BT BUddies is so sad for you but in admiration as well. There are not words to describe what you all are going through and I cannot comprehend it, even tho' we are fighting the battle of our lives ourselves. We do not know you but send our love, best wishes and a huge intergalactic hug to you all, Andy & Susan.

Wow, Kira really is very very special - how unfair that she (and you) have to go through this, totally devastating for you, I can hardly bear to imagine the pain you are going through.
Thinking of you and your amazing girl. If my children can show half the strength and spirit that Kira does by the age of 10, I will be one very proud mammy.
Please give her a big big cuddle from me and tell her she is utterly fabulous (which I'm sure you do all the time anyway). Sending you a big cuddle too.
Lots of love, Debbie xxxxx

Kira certainly is one very special young lady and she has some very special parents too.
I just wanted to send you all my love and support.
love Kathy xxx

havnt been on in a while,just sending my love to kira xxx
gilly x

I have just read your story, I cannot tell you how amazing and inspiring you are.
I think we all log on here because this awful disease has unfortunately come into our lives.
You are so brave and I cannot begin to imagine what you are going through but I send you love and strength and a huge hug to your beautiful daughter

Charlie xxx

To let people know that our daughter Kira passed away on Friday 25th May at 2:55am.

She was just 10 and her last 8 months were filled with dealing with GBM, brain cancer.

We are so happy that she was ours to love, even if for such a short time and that she is no longer in pain. Our hearts are broken, our precious person is no longer with us. I hope the pain we are left with will fade.



"You can't direct the wind, you just learn to adjust your sails"

Dear Bev,

I am so sorry to hear of Kira's passing, I can only imagine how terribly difficult the last few weeks and months have been for you all and how devastated you must be.

If there is anything at all I can help with now or in the future please don't hesitate to get in touch.

Thinking of you all.

Your BT Buddy,

Natalya x

So very sorry to hear of Kiras passing. She was a very special little girl who touched a lot of hearts. Sending you all love and support.
Kathy
xxxx

so very sorry to hear about your daughter kira
sending my thoughts and prayers
linda xx

So sorry to read about Kira, she sounded like a very special wee girl

Lynn xx

i am so so very sorry to hear of precious kiras passing but i am so glad that she is no longer suffering.
thinking of you all. xxx

Our deepest deepest sympathy, Andy & Susan.

I'm so sorry to hear of your loss - Kira was a very special little girl and she will have touched more people than you could ever know.
Thinking of you xxxx

Bless you And your family at this time .

Another bright star shines above,
To show us they send their love,
As they twinkle far away,
Their presence is there each and every day .

Shine away Kira xxxx

Kira has been gone a short while and life goes on. We miss her every day on this rollercoaster journey but know she is in a better place where she is free from pain, seeing clearly, running around having fun as children her age should do. That makes us happy. There is happiness after the loss of a precious loved one, it really gets easier in even such a short time and we each find our path to follow that makes sense. I have written a story called 'The Candy Floss Head' about our experiences that will hopefully be read by others so that they know they are not alone. My writing was my sanity through these times, my counsellor and therapist all in one. Thank you for your many kind words, thoughts and support. It means so much.
My love and strength to you all xx

''there are two kinds of hope; the kind you couldn't do anything about and the kind you could. And even if the kind you could wasn't what you really wanted, it was still worth doing. A rainy day is better than no day. A small happiness can make a big sadness less sad''
Rachel Simon.

Hi Bev,
Thank you for posting and showing that, even after the worst kind of loss anyone could ever imagine, you are managing to get on with life and even find a sense of happiness. That gives me confidence that if you can do it after losing a child, I will be ok if/when I lose my dad to this awful disease.
Sending love and best wishes to you and all the family,
Debbie xxx