My Jessie Journal:: Hi Sweet Pea, it’s daddy! Love you so much! Yesterday I had the opportunity to talk with a mom that has a six year old little girl with DIPG. I hate cancer so much and I double hate DIPG!!! She was asking me questions about your treatment plan, how you reacted to treatment and how you overall managed. It was like I hit the rewind button and went back to all of those mental and emotional files. I love being able to help parents talk about this journey no one wants to be on but yesterday was hard for me.
After I hung up, I had to leave for a meeting and cried in the car thinking back to the first time I heard you had cancer….then hearing it was DIPG….then hearing it was inoperable and incurable…then wanting to get super mad at the medical community for not finding a cure….then getting super made when they wanted to use you for a clinical trial so they could get some results…then watching you get radiation and talk chemo…then watching you physically change….then watching you stuff JoyJars…then hearing you say NEGU (knee-goo)…then watching you smile again….then hearing you laugh again…then having great memories…then hearing you had a 2nd tumor…then panicking to find a new treatment…then watching you struggle to swallow…then taking Christmas pictures like this one…then going to Denver for Christmas and seeing you hold snow…then kissing you good night on January 4th…then having mom wake me up at 4:30am on January 5th saying she can’t wake you up…then hearing your breathing…then calling the palliative care team…then watching you take your last breathe on earth…then getting super made at God…then seeing you wheeled out of our home…then planning your service…
I could go on for months with “then…”
So crazy how one call can cause your brain to flash back in seconds.
Although some of those memories are super painful…I will forever hold on to them as they are the ones I have…a ton of great ones and some gut wrenching hard ones.
Now I get the opportunity to use my brokenness to be a help to others. That was never the plan I had for my life but it is the plan I live out now with great honor.
Jess, I will NEVER forget you and will ALWAYS think about you!
xoxo,
daddy
