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 …
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 …
