Radiation Eli finished his radiation Wednesday, October 13th. He had some increasing pain in his back, so he had previously been unable to lay down on the table long enough for the radiation. So, I gave him all the pain meds at my disposal (maybe 5 or 6?) and he was able to finish. Eli …
For the longest time, when asked how he was doing, Eli's response was "Same as always". In his mind, this response made perfect sense since he felt generally well and that was the same as he always felt. It bugged him to always be asked the same question by every medical person who rotated in …
View as we drove away from radiation treatment As Eli and I were driving home from the couple of appointments he had today, we were greeted by pouring rain, pounding hail, thundering lightning, glowing sunshine, and a stunning rainbow. As I pondered the visits with doctors and staff, I realized the weather was a perfect …
Sir Eli the Boss Last Thursday, August 26th, our friend Erin texted me to see if we were going to the Utah Renaissance Faire, which was starting the next day. We've been attending for a number of years, but with Eli's declining health, I had decided not to go this year and I hadn't even …
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 …
Day -5 Sunday, June 20 Waiting to board the plane Sunday we flew to Houston for the Car T cell therapy clinical trial. The chemo and radiation we did in May quieted the cancer sufficiently and we decided to move forward with the trial. Waiting for takeoff During the past month, I filled out and …
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 …
Unfortunately, I'm writing this post while in the emergency department with Eli while he struggles to breathe. On Tuesday, we began celebrating his (then) upcoming 13th birthday by taking a group of his friends and siblings to a fun center. My friend Amy did they scheduling and planning, including designing and printing the Dungeons & …
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 …
Eli The Boss 