!!!DIPG families have nightmares while awake!!!
The correlation: She’s doing anything, in this case eating, then some mild coughing starts, gagging, and the eye rolls up. It’s a routine we are familiar with. We freak out, and wait. She’s upset, and scared. We watch for it to return to normal. Our night is ruined. When usually this “eye thing” would come back down after a few seconds, this time it lasted for minutes. Several. Possibly 10. Scary is an understatement. Why do we have to do this? Watch our child die, slowly. Her brain slowly squished outward into her skull as this barrage of mini tumors grows, and grows, eventually taking away my daughters sight, hearing, mobility, speech, self worth and humanity. I’m pissed. I’m tired of watching this. I’m tired of not being able to do anything other than give her more steroids and hope it helps. I’m angry that the families I talk to daily have to watch, or have watched, the same thing to its finality. Each child’s story eats at me. Those awful choices we/they have had to make, every damn day. The decisions to push on, or to just let go. Yes, families of children with no chance of survival make these kinds of choices during breakfast, on the 57 freeway, at Target. To dose or not to dose. To keep them here longer, or give them quality of life. What is quality, really? Weighing our child’s life in our hands. This is not ok. Rare… San Diego, Placentia, Huntington Beach, Irvine, Santa Ana x2, LA x3. That’s 9 kids in Southern California (alone) in less than 5 years. Those are the ones I am aware of. Rare??? No. Not rare. That’s a cluster. That’s something we are breathing or eating. Something in the air or water. No my friends, not rare at all. Common, and everyone should be worried. Who’s next… I want a damn cure, and I want it now. I’m tired of doing all the right things, and calling all the right places, speaking to all the right doctors, following all the right advice, and pushing all the right buttons ,and getting nothing in return for my child’s suffering. I want to run to an island with her and hide. Away from all of these pokes, and prods, and painful memories. I’ll be 40 this year. On June 2nd. She was diagnosed last year on June 2nd. My 39th birthday. It. Will. Never. Be. The. Same. My birthday is dead to me. That can be the first thing to go. Take it. I won’t be needing it anymore. (silent scream)