Late one cold winter night, or really it was the earliest morning hours, a few years ago, I sat in front of a computer screen scrolling, as I did many nights for almost six years. Title after title of clinical trials for drugs to treat pediatric brain cancer rolled up and disappeared into the top of the screen. My eyes darting from one side to the other, skimming for key words like “medulloblastoma,” or “relapse,” or “leptomeningeal,” or even just “brain,” looking for cause to click on a title. The current relapse treatment that Eli was on at the time had run its course, and won us 14 months that we had been told we wouldn’t have. So, there I sat again during those dark hours, looking for the next stepping stone to yield us another unknown amount of time with him. Any time I zeroed in on a potential trial for which he would qualify, one of the first things I would do is scroll to the bottom of the trial page to find the location or locations at which the treatment might be offered. If the trial was a real possibility, I opened a second window in my browser for maps and focused on the city of the hospital, then put in the search “church of Christ.” I had to know that if I took him somewhere away from home, there would be family nearby. Now, that wasn’t a deal-maker or breaker, but a factor in how I would prepare for the several months I could potentially be in a location where I knew no one.
|This is Eli's class's class shirt. I love that they quoted his|
speech, "Now that's what I call blooming where you are
|Eli's class with their class shirts, it says "Live like Eli" with|
the bloom quote on the back.
Story from our local paper.