I miss Hawaii, I just miss Hawaii…

“I miss Hawaii.” “You miss Hawaii, why?” “I don’t know. I just miss Hawaii…”
Katie’s tumor is causing havoc as it slowly grows and puts pressure on the areas of the brain close to the PONS. We were pulled out of the room, given the same look we remember so well, and were asked what we wanted to do. These symptoms we are seeing are expected, and will get worse. They could get better too, but not with our efforts, and only at the grace of the tumor and her body’s effort to fight it. They asked if we wanted to move forward with some possible tests and neurological exams, which come with possible negative factors and complications, just to see if there is a small iota of something that can be done to give her more time. Did we want to keep her in the hospital, risking our wish to have her final days be at home. We could up the dose of this drug, change to that one, remove another one. All with no promises that any of it will give her more time, and definitely with no option of survival when looking at the big picture. And quality of life, well that will be gone… So, we continue to stand by our decision, that we do not want our precious child to be put through any of that. No… We want her to be at peace. No more suffering. No more pain. If anyone thinks that this was easy, and/or that we are quitting, please don’t share that thought with us, because neither is true. Trust us, and trust that the other #DIPG parents who come to this conclusion, did not come by it easily, or selfishly. Making a decision to let your child die is the most awful thing we will ever do. We will never, ever, be the same. We are devoid and empty inside. As of now, we are taking her off of the phenobarbital and increasing the Ativan to keep her stable, and hopefully happy. On or off the anxiety medicine, she is not herself anymore, so we will not drag her through the motions for our own benefit. She is not in pain, thanks to her oils. If any indication of pain begins, we will start pain meds. Being at peace may give her more time, more quality time. We are heart broken and just need time to process this. We are hoping that she makes a turn for the better, and we can enjoy her for much, much longer. We will update in the next few days. Please keep Ms. #KatherineTheBrave in your thoughts and hope for a turn for the better along with us. We appreciate it. Thank you…


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