I was very anxious about Eli's PET/CT and was sure the disease had spread beyond the spot by his eye. He had the PET/CT on Tuesday, but results weren't scheduled to be read until Wednesday. I was in a dark place waiting for the results and I was impatient, refreshing the health app to see …
It's interesting to interact with someone who knows more than you. Eli's doctors are smart and have much more experience than I when it comes to fighting this cancer. I've appreciated their expertise and learning from them. I had been increasingly concerned by the various symptoms and side effects that have popped up the last …
I've seen dark before, but not like thisThis is cold, this is empty, this is numbThe life I knew is over, the lights are outHello, darkness, I'm ready to succumbI follow you around, I always haveBut you've gone to a place I cannot findThis grief has a gravity, it pulls me downBut a tiny voice …
Cycle 1 After three weeks of Eli's new medication, he will get to take a break from it for a week. This medication is given in 28 day cycles: 21 days on, 7 days off, and will repeat until it stops working. Within a week of starting Stivarga/Regorafenib, Eli could tell his thigh tumor was …
While waiting for test results to guide our treatment decision making, we have been making progress on Eli's list of things he wants to do. Basically it's his bucket list, which, as it so happens, I had the foresight to start work on many months ago, since, it appears, foresight as to where this journey …
Years ago, when Eli was four years old, I had a sewing client who needed a dress altered for her niece. Her niece had recently died from brain cancer and the white dress they wished to bury her in was too big. I remember feeling so sad for the family who had to bury their …
Eli The Boss 