Monthly Archives: December 2016

Joy

This is what we lost because of cancer. #OurJoy #ThisIsDIPG Every day without her is another day we regret. We can’t even decide what to do for the holidays. There will be no cocoa. No garland. No tree. No lights. No sweet cookies baking in the oven. No laughter. If you think this is just my misery and that I am evading my other children, you forget their age. None of us want any of it. We have talked and tried to come up with a plan and it always ends in silence and more questions. Any decision we make is met with concern of regret. We miss her so much. We are wracked with guilt and can’t enjoy ourselves. I don’t need any advice or ideas with this post. I know everyone cares, and has great suggestions, but none of it matters when your family can’t look past their own misery as a whole. We are shells of what we once were. No longer the strong family unit we used to be. At 42, 40, 18 and 17 we all feel the weight of this burden. I have no little children. My girls have opinions and felt their sisters death as an adult would. They are angry, sad, miserable right along with us. There is no joy… and I can’t reach her subconsciously for direction. I’m tired of trying to come up with a damn plan so that my heart doesn’t break. I can’t take it anymore. So there will be no joy. Joy was given no survival rate. Joy was sent home to die at 7 years old. We died too. Thank you cancer. Thank you very much for stealing our joy. 
#katherinethebrave

#dipg

Alissas Birthday

Today Katherine’s sister turns 17. Alissa, now our youngest living child, reflected on last years birthday with me, and how stressful it was. We both regret not giving more attention to Katherine, and focusing on the things that didn’t matter. The drama… We wish we had more time with her. The sense that she would be here forever because this just doesn’t happen was stronger than the obvious to us all. This years birthday will feel empty, and have an air of confusion surrounding it, obviously, but we are trying… every day we are trying.
Love you alissa… You deserve a fun filled birthday, with no drama, and good memories. We have had one hell of a year. Between the sicknesses, losses, and unnecessary distractions, we’ve done pretty good, haven’t we? You were a big part of Katherine’s life. She loved you for the traits you might not think were important. You made her laugh. You did makeup like a boss. You took amazing selfies. You both had a deep love for hot chocolate. Should I go on? Don’t let anyone get you down. Say, “See Ya!” to the haters and enjoy your day. Turning your back on the drama, and facing the positive future is the best route to take. You just want to be happy, and that’s ok. You have one life, so own it! #GetIt… And as I always say, #BeGolden #BeTheBetterPerson Stay strong girl! You got this! We’re gonna eat like King’s tonight! And we love you… always. – mom
#SuperSibling

#KatherineTheBrave

#DIPG

Know Your Charity

#PleaseShareKatherinesStory 
**Ignorance Is Not Bliss For A Child With Cancer!**
Just saw another American Cancer Society commercial using our children to raise money for cancer. It’s never easy to see these. Every time I do I shake and get so angry, and frustrated inside. I know the truth, and I want to shout it into the mountains and write someone, and scream! Instead I will plead with you all.
Do the children suffering with cancer a favor, do Katherine a favor, if your intent is to give to pediatric cancer, and not specifically #DIPG, then DO NOT give to The American Cancer Society (RELAY FOR LIFE), The National Cancer Institute, or even The Childrens Cancer Fund of America! NCI gives 3.8% and ACS give 1% of all funding to pediatric cancers, yet continues to use our children to gain resources for adult cancer, which are curable and/or already has so much funding as it is. And, what they do give to pediatric cancer predominately goes to other Childrens cancer, and not to Brain Cancer, which is the number one killer of children with cancer under 10, and cancer as a whole is the number one killer of our children with diseases. What they give is unacceptable and how they lie to you, the public, is unconscionable. CCF is fraudulent and has a 2 star rating on Charity Navigator. The story behind their rating is sad and an example of how giving without awareness can go so terribly wrong for those stricken down with a cancer diagnosis, and looking for help from those who have given to them. 
I’m not saying anyone should get more because any loss from cancer is tragic. However, here is a staggering statistic to also consider: The average loss of life for an adult who succumbs to cancer is 17 years. The average loss of life of a child who succumbs to cancer is 77. (mic drop)
Do your research first! Send your money to the places that will put it to good use for our kids. Thank you…
#Truth365 #KatherineTheBrave #DIPG

Scared to Death

I wish walking into an elementary school did not cause so much anxiety. I seriously ran in there. I left my car running on purpose, door open so nothing would interfere on the way back to my car, and ran for the office door. Mumbled what I had to say. Ran out. Didn’t even look at anyone in the eye for too long. I was literally scared to death. I coordinated my drop off to be in between classes so I wouldn’t have to see children being let out of school. What the heck is wrong with me. This healing process is draining and taking bits of me with it as it moves along. #KatherineTheBrave #DIPG #LovesAndKisses