Eli M.D.

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 had radiation that day and the other doctors weren’t in the clinic that day. I emailed the clinical trial doctor to try and pin down a trial date and Eli instructed the radiation oncologist to prepare to radiate whatever we would find on scans. We talked about how best to figure out what was going on inside his body and settled on the PET/CT that Eli had already requested and I had tried to schedule in anticipation of the order.

This is the only picture I have from Monday–Eli’s pain scale diagram.

Tuesday, we had a full schedule: PET/CT, radiation, orthopedic surgeon. The PET/CT was touch and go for a bit when we got behind on Eli’s pain meds (we’re just doing Tylenol and Ibuprofen for now). He was struggling to get comfortable enough to lay down for the scan.

I had gone up to the clinic to beg for intravenous pain meds for Eli so he could get through the scan since the Ibuprofen was slow to kick in. I felt so helpless, unable to do anything else to make him comfortable. The doctor was willing to order the meds, but no nurse was available or willing to go administer them to him. While waiting for the staff to see what, if anything they could do, I sat there wringing my hands, trying not to burst into tears. How could we not get the pain relief he needed when we were right there at the hospital? I should have thought to call one of the supportive oncology nurses, but I didn’t think of it at the time and who knows if that would have done any good anyway?

I was unsuccessful in that quest. Fortunately Eli managed to eventually settle down and the scan was done.

We drove up to Huntsman Cancer Hospital for radiation, then we went back to Primary Children’s Hospital to meet with Dr. Groundland, our favorite orthopedic surgeon. His assistant had set up the appointment with us ostensibly to check out Eli’s finger, but he really just wanted to see Eli because he missed him. 😂

We made great use of the visit by getting him to pull up the PET/CT images so we could check them out. Since we wouldn’t receive the radiologist’s report until Wednesday afternoon, Eli decided to write his own report. Who needs a medical degree for that anyway?

Eli’s report is transcribed below, with the corresponding images (Cancer cells “light up” on the images, but so do some normal things, like the heart, bladder, and brain. They look for asymmetries and things lighting up where they shouldn’t).

“Between 7 and 9 ribs down [radiologist’s report says 9] there is a tumer about the size of the width of the rib”
“A tumor in the thigh half the size of my heart”
“…and in my neck it is about the size of my arm tumor in previous scans.”

Today we got the actual radiologist’s report, which confirmed Eli’s findings. Dr. Fair communicated the results with the doctor in Houston, whose trial we’re trying to enroll Eli and we confirmed that we can do radiation. Unfortunately, Eli has to wait until June to start the trial because another person got on the list first and only one person can do the trial at a time with a month between patients. 🙄 Thanks FDA.

I get that they want to protect the safety of the patients, but when their regulations prevent us from getting treatment, well, you know, death can happen from the delay. Not my favorite government entity right now.

We see Dr. Fair tomorrow to figure out a plan to keep Eli’s cancer under control for the next 5 or more weeks.

3 thoughts on “Eli M.D.

  1. Alain in France

    Hello from France. I have just read every page of this blog which I have found by accident searching for information on another kind of cancer. I started from the beginning and just couldn’t stop.
    I’m a cancer survivor myself. One of the “gentle” kind, which hopefully won’t come back after these many years.
    Following Eli, you and the rest of the family along this almost 3-year journey makes me feel like I know both of you. Eli is a very handsome kid, he seems to be very bright, exceptionally brave and good hearted. I have a painful feeling of injustice thinking that his young and promising life is now at very high risk of ending so prematurely. Such things should not happen. No way!…
    I’m not much of a believer, but if there’s someone above us who can change things, then please make this clinical trial a success, please give him a future. My thoughts are with Eli and you.

    Liked by 1 person

    1. Alain, thank you for your kind words. We hope for success with the trial, even if it is temporary. I appreciate your feelings of kinship. This journey has brought me in contact with people all over the world and has given me hope. Thank you!


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