I shouldn't be surprised by the complexity of getting some prescriptions filled, but even so, it shouldn't be as difficult as it is. When we were trying to get Eli discharged from the hospital last Friday, July 30th, the only thing holding us up was getting a prescription filled. We had been transitioning from a …
I have thought about this question off and on for a long time. There are a couple definitions I found that apply here: 1. the capacity of an object or substance to withstand great force or pressure 2. the emotional or mental qualities necessary in dealing with situations or events that are distressing or difficult …
Here are pictures from our last two weeks in Houston, followed by an impromptu visit with friends in Louisiana. We appreciate everyone who made our time in Houston and Louisiana special. I don't have time to write everything I wanted to about the trip, so I am posting this as is.
Wednesday June 30 Yes, the market is part of the gas station, but it was full of fun and interesting food options--not a typical convenience store. Eli was discharged from the hospital in the morning. He wanted to go on a walk, so we walked to an international market down the street from our apartment. …
Over the last couple weeks, Eli has done two chemotherapy infusions and five high dose radiation treatments. Now he's off pain killers and visible tumors are shrinking. His leg is still swollen more than "normal" (his new normal involves chronic leg and foot edema due to damage from past radiation treatments). This neck tumor was …
When life hands you bacon, make bacon bandaids. "Life before death" Eli was discharged from the hospital Friday with normal breathing. The breathing treatment in the Emergency department had gotten things back to "normal", whatever that really is for him. "Strength before weakness" While Eli wanted surgery, that was never a good option. He has …
I've been trying to figure out the best answer to this common, reflexive question, because the answer for the last week or so has been "Not so good" and "please don't ask". Last week we met with the team to discuss the PET/CT and next steps, like how do we make it to the trial …
How do you find "measurable disease" when there isn't any? I had postponed writing this post, not trusting my interpretation of Eli's latest scans. There's pretty much always something on his scans that raise questions about whether something indicates the cancer is being active or not. The long and short of it is: There is …
The head/neck MRI showed the tumor behind/ below Eli's eye is stable. This is good news. Our team discussed the findings and decided on two more cycles (6 weeks) of chemo, then we'll do more scans. Basically, as long as what we're doing is working, we'll keep doing, unless other toxicities appear. Thursday, we were …
Eli The Boss 