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. …
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 & …
With Eli's continued pain and not so mysterious neck lump, came more visits to the doctor than I like. Eli's eagerness to go meet with doctors, get tests done, and take pain meds was evidence of the discomfort being caused by whatever is inside his body. Monday, we met with the radiation oncologist, since he …
When things are going well, it's easy to pretend that it will stay that way indefinitely. Life starts to feel more normal. For example, Eli begged me to get him the parts to build one of his inventions. A few pulleys, paracord, and hooks later, he had converted the swingset into a device designed to …
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 …
Since we returned from Cancun, Eli's eye pain has been resolving, so that has been becoming less concerning. On the other hand, he has developed edema in his left foot and leg that has been getting worse. He also has a small swollen lymph node in the inguinal area, which brings to mind the swollen …
Wednesday, December 30, 2020 Day 1: Eli and I flew first class with my sister, courtesy of my sister Jennifer and her husband's frequent flier miles. I loved the pod seating, with customized reclining and large screens. I have never been so comfortable while flying and even took a nap. Eli enjoyed listening to an …
I've already written about Eli's inpatient stay the beginning of December, but what I didn't mention was what we were doing that week at our house. We were moving out of our home of the last 15 years. Here's the story: Home Makeover A big thank you to Lexi and Parker of Uplift Mission, Jackie …
Eli The Boss 