Daily Archives: May 13, 2016

Lucky

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!
Latest symptoms:

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

14: Drooling

15: Fears of being alone

16: No longer able to color

17: Anxiety

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

Bath time!

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!!!