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.
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).
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.