Well eli here. At this time I'm in the hospital. Not too bad I'd say. I watched Clouds and well I'm in the hospital so ironic I think. Clouds is a move that is about a teenager with cancer. [Mom here. Clouds is a movie on Disney +] And that nose thing isn't that bad …
Day -3: Tuesday June 22 (continued) Our new friend Elisa knew that Eli left his dice for Magic the Gathering back home. We couldn't find any at the grocery store to which she had given us a ride on Monday, so she looked on Amazon. She found some, that ended up being free because of …
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 …
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 …
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 …
Eli The Boss 