Daily Archives: May 1, 2016

Loss of life, 71 years

#KatherineTheBrave has lost the ability to fully: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

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
Remember, she is 7, not 70.
Statistic time:
Keep in mind, that for #DIPG its a 9 month average survival rate, not 5 years… And even with these staggering loss of life statistics for our children, pediatric cancers get only 4% of all cancer funding, brain cancer gets 1%, yet brain cancer kills more kids than any other cancer before age 10, and DIPG gets none of that funding and it’s survival rate is less than 1%. You are terminal upon diagnosis. WTHeck, right?

Katherine Completes Our Family

Question for the other #DIPG parents: did your child develop hiccups as the tumor progressed? Thank you, and I am so truly sorry for conjuring up memories which may hurt. It’s just happening so frequently that I’m confirming if it’s a symptom. Thank you…

Katie had a good day. She is tired, occasionally gasping, coughing, having trouble swallowing. She sounds so congested most of the day. It ebbs and flows. She is fully aware though and insists on walking around, being involved in everything. Someone’s always attentive so she doesn’t fall. The questions, because she’s frustrated and wants to know what she can’t keep up with mentally anymore. She is agitated often, but I’d be much more than just agitated if it was me. I’d be angry and spiteful if I had a much more mature awareness of my prognosis. So we are trying to be patient and let her go through the motions. It’s hard though, not to scold, or just redirect her harshly. The guilt… That keeps it at bay.
We love this child so much. She completes this family, loves sherbet, art, musicals, is opinionated, rainbows make her smile, is stubborn as a bull, loves unconditionally, is eager to please, demands family togetherness daily, and deserves more than four…
Thank you everyone for the support.
#GoGrayInMay

#GoGrayForKatherineTheBrave

#KatherineTheBrave

#PleaseShareKatherinesStory

#MoreThanFour

#KatherineDeservedMoreThanFour
Photo Cred: Jenni and Kanani

#HopeForParker

As sad as it sounds, it’s good to not be alone in this battle. I wish we had met Parker and his family on different circumstances, they are amazing parents and Parker is surrounded by the best advocates a child dealing with #DIPG could ask for. Thank you for sharing your story. #KatherineTheBrave #HopeForParker
https://www.facebook.com/hopeforparkerlandis/photos/a.1084118111620282.1073741828.1083064875058939/1141664009199025/?type=3