#KatherineTheBrave was honored tonight at an event organized by #BuildingHope and the boards President (and friend) Ada Chan and the Los Angeles Real Estate Council for the City of Hope Hospital. This event is ran each year to raise funds for a specific medical research need. This years focus for funding was on Brain Cancers and specifically pediatric brain cancer research. Katherine, the inspiration for this event, was recognized for her fight against Diffuse Intrinsic Pontine Glioma. Many of my old and current colleagues joined us in support of her battle and the research needed to cure this cancer. Tonight was an attempt to raise money for research into a possible immunotherapy cure for this type of glioma, and many more types of brain cancer. When we left, the total funds raised for this new immunotherapy research, and the scientists performing the tasks, was gross over $80,000. You heard that right… ***$80,000*** For those of you that know, #DIPG just does not get this kind of funding. It’s unheard of. And this is why I am honored to be supporting this type of research for our daughter, and for all of the children diagnosed with brain cancer. Thank you to all my past and present colleagues for joining us tonight in our fight against cancers, many of which, in this day and age, are still considered terminal upon diagnosis, for children and adults. And thank you for taking a night out of your busy lives to step into ours and help us spread awareness, shed some tears, and eat sherbet! Katherine’s favorite! I see a cure in our future, or at the very least, a better chance for our kids to fight… #NeverGiveUpHope #COH #CityOfHope
Please #GoGrayInMay Katie would love to see your gray ribbons and outfits this May. Please tag her, your mom, sisters, and/or dad in your pics! Share with your friends and family. Ask them too go gray for the #1 killer of children with cancer under 10!!! We need your support and We want to share on her page!
Right now, as a #DIPG family you are told your child has cancer, your child will die, please start palliative/hospice care, have them suffer through radiation to give them more time. You’re told to “please donate your child’s tumor to science when they pass”. You will fill out autopsy forms before your child even declines. Staring at the trace of a body on a form knowing a pathologist and a mortician will fill out this form for your child/ of your child. A child they’ve taken away from you way to soon because it must be a viable tumor. It’s hard to do. It’s hard to hear. We know… However, it’s necessary that you know this, and for science we do it. We do it so that other families will hopefully be saved from this hell we live and so that they won’t have to do this. We speak, fundraise, donate so that other families will not feel this pain.
The attached is how and where #KatherineTheBraves tumor will go to. So please support us. #PleaseShareKatherinesStory which may help motivate the support of others, and help us raise awareness, which we need so desperately!
After showing Katie the pictures of Tori’s prom photos, she said, “Was Amber there? I wish I could have been there to take pictures with Tori.” (sad face) I said, “Well Katie, it was such a stressful day. It would have been too much for you. Too much anxiety. I’m so sorry…” She replied, “I could have gone. I’m a very patient kid.” I died… Katie was always the type of child that you could take anywhere. She was so calm and mellow. Even the wilder folks amongst our friends didn’t mind her there. She was such and old soul.
Well, that is gone… She has so much anxiety now, she can barely stand to be away from us while we are even in another room. It makes her physically shake. She can’t move around to express it or get to us, so she cries, or calls for us, or hurts herself trying. All of this while there are people in the room already. It’s not that we’ve abandoned her, she just wants us all there or she worries. It’s heartbreaking…
“You are a patient kid Katie. But your patience is being stolen from you. You deserve so much more. I’m so sorry…”
#katherinethebrave #dipg #morethanfour #alifestolen #100soflivesstoleneveryyear #pleasesharekatherinesstory
Katie had a lot of visitors today. Some we missed and some we were able to spend time with. We can’t thank you all enough, for all that you have brought to us, the support… Emotionally, financially, and physically.
Because of you #KatherineTheBrave had a better day. And although I wanted to make this post happy and joyful, because she really did have a good day, we are not afforded such luxuries, and the #truth is the only way we are going to cure this cancer. We know it could all be gone in seconds with #DIPG. Every day is a roller coaster for us. Yet, we are lucky. You heard that right. Even with Katie’s current suffering we are lucky. She is aware. Most of the day. I can still say I love you, and hug her, and she can feel it, and say it back to me. Right now there is a child out there (or rather many) with DIPG who is in a living hell. Many kids currently suffering with DIPG are further into their diagnosis and they can’t feel their loving families touch, or even respond to it right now. They are fully cognitive, yet trapped in their own minds, unable to move. Petrified. Alone. Imagine that…
This is #NotOk. And this is why I ask you to #PleaseShareKatherinesStory. Because #KatherineDeservedMoreThanFour and #4PercentIsNotEnough!
1: Walk on her own freely
2: Eat on her own holding a spoon
3: Grasp or hold items for extended periods
4: Go to the bathroom on her own
5: Speak and express herself frequently
6: Eat Sherbet alone
7: Build Legos
8: Get in and out of bed
9: Swallow her own saliva
10: Control hiccups
11: Play with her favorite cousins and friends
12: Left eye is swollen and hurts/rolls around
13: Bring up phlegm
15: Fears of being alone
16: No longer able to color
18: Swallow normal bites of food
19: Sleeping normally
20: Can not grasp a paint brush (devastating)
21: Requires a wedge to sleep
22: Frequently requires a suction machine
Well… We can’t begin to explain how a child with #DIPG can go from barely being able to function normally, wetting herself, not being able to hold a crayon, crying and sleeping all day, to feeling great the next day and being in good spirits. We’re too afraid to stop and question it. #KatherineTheBrave is having a great day, and that’s all that matters! She didn’t even cry about her bath! Doesn’t she look relaxed? Me next!!!
Thank you Lydia and Linda for your help tonight. And thank you David for attending Alissas award banquet for me. Katie had a long day. It was just a long, long day. She choked on her first bit of food tonight. It was silent and had I not been looking at her, we wouldn’t have even noticed. It scared her to death. I’ve learned from countless parents and Dr’s that this is a very scary, and bad sign for a #DIPG patient. We are concerned. Tonight she slept early. She needed it. And so do we… So off we go. Here’s are some pics and a very, very scary statistic that we should all share for #GoGrayInMay. We are hoping for better luck tomorrow! Thank you so very much everyone. Goodnight… #KatherineTheBrave
Katie’s cancer will not be hidden. Her life will be remembered for what it was, beautiful, and for what it is now, a nightmare while awake. I’m devastated, and haven’t stopped crying all day. I want everyone to feel this, really feel this, so that those of you who share and support us continue to connect with the hearts and minds of those around you who haven’t heard, and who are still not aware. #TruthBringsAwareness #KatherineTheBrave #DIPG #MoreThanFour
*Graphic* #PleaseShareKatherinesStory #KatherineDeservedMoreThanFour #ThisIsDIPG #ThisIsBrainCancer #DIPG
She was like this all night. Raspy. Congested. Struggling to breathe. We haven’t slept at all. If she doesn’t sleep, we don’t sleep. Everyone pays the price for this cancer. However, these kids pay more than anyone. Nothing we feel could ever even contribute an equal amount of pain and suffering to what my precious child is going through right now. She deserves to live. Right? So why is this freaking happening? Last night, or this morning, (I can’t remember because I didn’t sleep at all), I had visions of Katie running through the house, calling for me, asking for a snack and what we were going to do that day. Eyes wide, I gasped and pushed it down. Not now. Not where she can see me. Those happy days are GONE. And they are gone because of #DIPG. Imagine a child running and playing, and hugging with all her might, giggling over her dads silly jokes, suddenly pulled backwards in time and her life source ripped from her. She is lying there, lifeless, and helpless. Drooling, mumbling, searching with her eyes for answers. This isn’t the stuff of movies. This isn’t a dream, or hollywoods latest scare flick. This is Katie’s life. Right here. Right now. #MoreThanFour #4PercentIsNotEnough