You can lull yourself into a false sense of security when a loved one is fighting cancer. You’ll have days that are so good that you can’t believe the diagnosis you heard months ago is real. You’ll convince yourself that someone must have made a colossal mistake and this has all been a bad dream. You’ll watch your kid dance and have fun, she’ll answer math/science questions with her usual intelligence and you’ll think that there is no way she could have a tumor growing on her brain. But slowly you’ll start to notice little things grow into slightly bigger things, her balance keeps going downhill, she is starting to drool and her speech is starting to get slower and more difficult. The only metaphor that  I can think of is standing on a railroad track looking at a train far off in the distance, a month ago it was only a speck on the horizon, now it’s still small but unquestionably growing as it approaches and one night you realize that you can’t keep telling yourself the train doesn’t exist or is going to stay off in the horizon forever.

You’re constantly terrified of the other shoe and when it is going to drop. Every flinch, trip, forgotten word, cough and headache brings on this anxiety that this is the beginning of the end and for you the real hard part is just getting started. This anxiety the singular most paralyzing feeling I have ever experienced and it’s happened at least 4-5 times so far. But now it feels like this time isn’t a false start, we really might be facing down everything that we have been terrified of since we heard her diagnosis. Every day it becomes harder and harder to put it out of your mind, every day you wonder what you are doing at work at not sitting by her side, every day you think about the big questions of life. I’ve been struggling to give half of myself to my job every day since her diagnosis, now I am lucky to hit 50% a day or two a week. Things that used to give me pleasure in my professional life are now muted and gray. My happiness is now exclusively tied into her and how she is doing on any given day, how happy she is, is she feeling any pain or discomfort. These are my benchmarks and nothing else matters.

So you try to piece together a life under these circumstances, because there is nothing else that you can do. You spend time looking at medical papers you can barely understand in hopes that something will jump out at you, you talk to other DIPG parents for advice, reassurance and comfort. You try and make every day as memorable for her (and yourself) as humanly possible. You try to not look at events on the calendar because that only brings thoughts of what your life is going to be like at that date. You become isolated and strive to live every day in the moment. It’s not a life I would recommend to anyone else, but it’s what you have to do to get moving forward.