As I sit here with a riot of thoughts, I realized none of them were really cohesive enough to make a decent blog post. When I tried to find the right words, my brain came back blank. I got nothing. Why is that?
Part of it is because what half of the world mostly wants to hear is the good and positive stuff we are doing to change the world. That’s fun to write, but it doesn’t seem to spur people to action. The other people in the world want to hear the horrible stuff. I’m a bit appalled at the number of supposed childhood cancer awareness advocates on social media who really don’t want to share anything other than pictures of dead and dying kids. It’s disgusting, and yet they have tons of followers.
Tonight I don’t have a story that would fall into either of those categories. There was no amazing advancement today. None of the kids I’m following died – praise Jesus! No, today was simply a day where parents I know watched their children play or eat or go to school, knowing that there is a monster growing inside of them. A savage, bloodthirsty monster slowly changing their brain. These parents live every day in a place of panic you can only know if you have been there. Doctors look at you with sad eyes. You know the look most people get when they go on hospice, or run out of treatments. Our kids and their parents get those looks on the day of diagnosis. Because while there are treatments, they are not highly successful. They try them because once in a while, the treatment will work. If we could see each child on a molecular level, we might be able to figure out why one child lives while many others die. That’s what Dragon Master Foundation is trying desperately to do. And we are desperate. We know the panic. The fear. The absolute powerlessness.
I spend a lot of my time trying to help people understand that we are at a critical juncture in time. We have a chance to impact lives in the most real way imaginable. The work we are doing alongside many partners will impact the way research is done. We are flipping the model. The old way isn’t good enough. We have other tools – better tools- that are within our reach. We could get there faster if people would just pay attention. It is hard to remember to do something like vote on social media every day. But it’s not nearly as hard as facing someone with a cancer diagnosis knowing you didn’t even try.
Tonight I feel both blessed and disappointed. Blessed by so many people who went truly out of their way to help us with our bid to win $500,000 from Microsoft. And my heart is sorely disappointed in those who didn’t make the slightest effort to help us in this or other attempts. You’re busy. I get it. I used to be “busy”, too. Ironically, I’m busier now that I have ever been in my life. It won’t bring my son back. But it will save someone else’s child. How soon it does is up to each of us.