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 …
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 …
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 …
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 …
