Last night I started writting about our busy weekend at my brothers wedding. We had a wonderful time and I will post that story later, but right now mind is consumed with other things.
I found out this morning that a little girl we know from clinic, Avalanna, lost her battle with cancer yesterday. She also had a brain tumor, a much less treatable more aggressive type than Kai’s. A tumor that should have taken her life long ago but this girls will to live gave her and her family 6 years together.
We did not know her well, but she was often in the clinic when we were and she just lit up the room. She had the type of personality that would consume you. She always had a story to tell and seemed so happy to see her friends at the JFC.
There were a few times, when she was walking, that she came over to Kai in his chair to talk to him. She would show him things and play. It never mattered to her if he ever said anything back. It never mattered to her that he could not stand up or walk. It’s rare for kid to come over to him like that. It is hard to keep a kids attention since Kai does not interact that much, but she reached out to him. She was so beautiful in that way.
When we were inpatient a few weeks ago she was in the room next door. There are very few single rooms on the floor and the two of us were in them. I realized pretty quickly that week that we did not get that single room by chance. As we started talking about Kai’s tumor growth and were visited by the PACT team i realized we were in that room very intentionally. I suspected the same was true for Avalanna. We had many of the same doctors and I would see our team visiting both rooms each day, including the PACT team. I got a few glimpses of her that week. I heard her laugh. I saw her riding down the halls visiting her nurses and staff that, I can only imagine knew her quite well after 6 years. When Kai was discharged we shared an elevator ride and Kai and Avalonna showed each other their stuffed animals, his monkey and her bunny. She was all smiles nestled between her mom and dad. I didn’t dare ask how she was doing or what they were in for…by then I had a pretty good sense things were not going well for either us or them… I just had a feeling this would be the last time we would see her.
My thoughts go out to her family today, and to all of the families of all who have lost a child.
She has touched my heart and I will never forget the sweet moments she shared with Kai.
September is Childhood Cancer awareness month and I have not said much about it this year, but please let this story be a reminder to us all of how crucial it is to fund research for these kids. This little girl touched the hearts of so many in her short life but she endured so much to do so.
We need to work to make less taxing and toxic treatments for these kids.
Please take a moment today to think of Avalanna
and the more than 2,300 children who will die of cancer this year.
And the more than 18,000 new cases that will diagnosed this year,
36 new cases diagnosed each day
Cancer is the #1 cause of pediatric death in the US,
yet childhood cancer research is vastly and consistently underfunded.
These kids deserve a fighting chance!
Kids get cancer too!
To read more about the life of Avalanna:
Dad Remembers His special Girl
https://mobile.twitter.com/Avalanna
To learn more about pediatric cancer research:
a Children’s Brain Tumor Cure
Keikikai 
Wasn’t sure if you had met Av, although I don’t think there was a person in clinic who didn’t know her. She really was (and will continue to be) such an extraordinary child. I’m not surprised that she would go over and talk to Kai. That little girl was filled with so much love. Know that we are thinking of you and sending you so much love.
Thank you so much for sharing the story about Avalanna. She sounds like she was such a wonderful little girl. Thank you also for sharing the links and trying to spread awareness. It is obviously so apparent to us what our children go through and face day in and day out, but it is difficult for others to imagine. They don’t see what goes on in clinic or the admitted floor. They won’t know unless we tell them and express the need for research.
I’m always thinking about you and your cutie Kai!
Shari Butler
Kerri,
Well Said. As always, I’m thinking of you. Stay Strong.
As usual Kerri you have opened our eyes and hearts to situations many of us have no idea exist. Your words of compassion and praise for Avalanna are deeply moving and the same goes for your big guy Kai. The life of a child is such a precious gift. When it is lost it effects everyone those who knew them and those who didn’t. These tiny messengers send the most intense messages. I truly believe that. I am thinking of you always and now I am thinking of Avalanna and her family. Thank you for that.
Jen
Jen Morin put it best. I have only seen you and Kai at playgrounds here and there, but you’re story and now the story you have shared of Avalanna are so important to share, and you are right, more needs to be done to open peoples’ eyes to the fact that kids are suffering with cancer every day, and they can not advocate for themselves, for research funding, they need us to do that! Thanks, Kerri, for keeping up with your blog. I wish the best for you and Kai and will keep you and Avalanna’s family in my prayers.