#DIPG parent discussions: Do you think that our 7 year old is finally ready to be told she’s dying? She doesn’t question her slow progression into immobility. To us this is almost worse than the questions from a child who wonders why they all of a sudden cannot walk, speak, function as they did less than 8 days ago. What did other parents do here. We were told not to tell her, unless she asks. We stand by this, however… we have always felt that at some point we needed to say something, if the time arose, and here we are…
DIPG News: Janet says below that Chad and Jack are hits! Why would a parent of a child whose death resulted from DIPG ever refer to her child as a hit? Well, here’s some insight. When you are diagnosed with #DIPG, they tell you your child “will” die from this cancer and that there is nothing they can do for that child because they are doing all they can already, lie to you and tell you it’s rare, and then send you home. Isn’t that awful? There is no hope. The mourning process starts from day one of diagnosis. So you mourn, for days, months, years in rare cases. You are supposed to accept this… As such, some parents are making their kids “popular” and “famous”, sharing their stories, holding nothing back, speaking the ugly truth. Poster children… They are hits. Their faces are making a difference! These kids deserved more than four. Thank you to Janet, Jenny and Tammi for your efforts for our children. For sacrificing your private memories, and pain for our children. You, and your families, are the reason we are donating #KatherineTheBrave‘s tumor. Because of you, we know things are going to change, those tumors will make a difference, funding will be there soon, people look to your children and question the current situation. Because of Jack, Chad and Michael, things will change. Thank you. Thank you. Thank you.
-Brain tumors are the leading cause of death from childhood cancer.
-We estimate that approximately 300 children are diagnosed each year in the US with DIPG (interpolating this to the world population will lead to a few thousand globally).
-Over 90% die within 12 months, 97% within three years.
-Usually diagnosed in children from ages 5 to 10.
-Diffuse Intrinsic Pontine Gliomas account for about 10 out of every 100 brain tumors in children but constitutes about 80% of deaths resulting from brain tumors.
Katie’s Recent 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
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