I can’t breathe… I know that face. I know that sound. I will never forget it. It’s permanently etched in my soul. When I’m dying, and leaving this earth, my miserable existence, and painful ending, will never compare to the suffering I experienced while watching my small child whither away after a year long battle with a cancer that’s never lost the fight. This right here is the sound of your life changing forever. And you can’t go back. You can’t fix it. You can’t say never mind I’ll try this instead. Can we see that last scene one more time. This time show more effort and make better choices when it comes to your kids life, ok… You are completely surrounded and your out of bullets and your petrified. Even surrounded by family and friends, your are completely, and utterly, alone. Drawn in to the moment, giving every last bit of energy you have just to ensure that your child dies a peaceful death. That’s all that matters now. Their comfort, because you couldn’t solve any of the other problems they were burdened with after diagnosis. At least we can give them that. Sad, huh? This is DIPG folks. This… right here. When I ask for a small donation, or a little help with a lemonade stand, or a penny here and there for a lab fighting this monster, this is why. Jennifer, McKenna, Katherine, Parker, (fill in blank)… Which kids next? I can’t breathe. I just can’t… We’re not doing enough. We’re just not.
“Warning: This video may not want to be viewed by our loving DIPG community.
After discharge from the hospital, Parker was clearly more comfortable and in less pain. We are so relieved we moved forward with the procedure rather than just resume hospice as some doctors seemed to be recommending.
We are keeping our superhero as comfortable as we can. His breathing is slowly becoming shallower and labored, and fluid is building up in his lungs and airway. Morphine helps to control any pain and relax his body allowing him to breath easier.
A couple nights ago, when this video was taken, we were prepared to watch and assist in whatever way possible, with the process that is inevitable with DIPG. His body has started to change; this is what dying is, at least for our Parker. Life and death, such incredible juxtapositions.
Standing strong, being alert, trying to listen to the little words he has left, medicating, loving, supporting, maintain composure and compassion…it is now our duty with this little man. Nurturing what remains of an enthusiastic and incredibly smart boy–who is still incredibly smart–but now locked in a body that refuses to allow him the freedom of life. This is DIPG, right here. We have had a year to “prepare” for the hours, days or weeks that are to come, but alas, no amount of time is enough to make it easier.