Daily Archives: June 15, 2016

Trollers

I want to personally thank everyone for taking care of the trollers on Katherine’s page. You are all so supportive, and understanding. Even when the #truth of our posts, are tough to swallow, you know we’ve lived it, and you are supportive of our decision to share our life and spread the word about this awful disease. #KatherineTheBrave received a 0% survival rate. She was given 0% funding for her cancer, #DIPG, from the government. We had to reach far into the depths of our lost souls, and beg for any hope in this nightmare. We fought tooth and nail, and were not awarded for our efforts. She suffered… so much. Our baby suffered. We promised Katherine to fight for her. We promised her that we would use her story to keep other kids from suffering her fate. We promised her transparency. She wanted us to share her story. She smiled for every picture. In fact, if she didn’t smile, she made me delete the picture, and take it again. She’s not smiling anymore. At least here on earth. But that doesn’t make this any less tragic. So, if they don’t want to witness the truth about pediatric cancer, than I am sorry, but I will not stop showing the hell we experienced, that she experienced. I know it’s hard for families going through this as well, to witness the possible future, but it’s real, its raw, it’s what they are experiencing too, and this is why they can’t look at it. It’s hard, I know…. However, my posts are no more graphic than what we saw every day at the hospital, and with our new cancer families children, who have died as well. We were surrounded by it. Why is Facebook any different? It’s not, and its the best place to make her name known, and to spread the truth, and to help find a cure. As I’ve said before, confidentiality and secrecy is what killed my daughter, transparency will help cure this awful disease, DIPG. As people see it here, and as they get angry about this truth, it will scream volumes over a few stragglers in a hospital, experiencing it first hand. In Katherines name, I will not stop showing the truth, until we have a cure. I apologize for anyone we’ve offended, but feel free to remove yourself, or… we will. You could also choose to become witness to this tragedy as it played out to us, think differently, and help us fight.
Thank you… #MommaTheBrave and #DaddyTheBrave

Katherine Was Endless

#KatherineTheBrave

#KatherineTheLegend

#PleaseShareKatherinesStory

#ThisIsDIPG
Today we said our final goodbyes to Katie Baby. We watched her go in, and we cried. Together.

It’s been unseasonably cold for the past few days, and starting tomorrow the heat wave comes. Strangely. 

A balloon followed me around this morning, and right before we were to leave it floated from one end of the house, all the way through the house, into the parlor, and to the right of the living room. It hit me and continued to remain there until I grabbed it and tied it to Katie’s items going with her. I brought it to Katie today. It also went with her.
Katherine’s Eulogy from Mommy and Daddy
–A young life cut short–
Do not judge a song by its duration

Nor by the number of its notes

Judge it by the richness of its contents

Sometimes those unfinished are among the most poignant…

Do not judge a song by its duration

Nor by the number of its notes

Judge it by the way it touches and lifts the soul

Sometimes those unfinished are among the most beautiful…

And when something has enriched your life

And when it’s melody lingers on in your heart.

Is it unfinished?

Or is it endless?
Katherine was a daughter, a sister, a niece, a granddaughter. But beyond the labels, which she took to so naturally, and handed down to her by birth order, she was also a naturally patient leader. A loving care giver, even in her time of suffering. A consoler to those children also suffering her fate. A kind ear to those struggling to come to grips with her diagnosis. And an amazing cousin and friend to children and adults, alike. You were special, and everyone knew it. Katherine was unfinished. 
Katherine, we promise to continue the fight against this cancer for you. We can do this because you’ve given everyone a precious gift in more ways than you know. You’ve left us with some amazing tools. You’ve shown us that even in the worst of suffering, we all still have a little more to give, to ease the suffering of others and to fight one more battle. You’ve shown us that even as we lose ourselves, and our ability to function as humans, or our natural instincts are being ripped away from us, you, or we, can still smile and laugh. You’ve shown us how strong the bond between family, friends, and even strangers, can be when it comes to supporting and loving a child who is suffering with an incurable disease. You’ve taught us that hope and love can move mountains, pay bills, pay thousands of dollars in oils for a better quality of life, surpass a life expectancy, and keep a family functioning. You’ve also given a piece of your flesh and blood to science for further research. It will not help you, but it will stop others from going through the nightmare that you’ve experienced, and I know this would have been your choice. You were a giver, with no regard to yourself, often. Katherine was endless.
Katherine, we will miss your laugh, your giggles, your witty brain, your half hugs and kisses, your love for Hawaii, weird socks, Legos, rainbows, unicorns, sherbet and movie nights. We will search our entire lives for anything comparable to you, but we are highly unlikely to find it, because you were unique, and we could see that in your eyes, through your old soul, from day one.
Katherine you will not be judged by your short life, or insurmountable suffering. You are not finished. You are endless.
We love you Katie Baby. You are Katherine The Brave, now Katherine The legend. 
Loves and Kisses, Daddy, Mommy, Tori and Alissa
#DIPG