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 raise him up in a harness, using weights tied to the other end.
That was a couple weeks ago and he accidentally caught his finger in one of the pulleys. He talked the doctors into ordering an x-ray, but we hadn’t yet had it done when, this past Monday, he complained about pain in the side of his heel. The radiation oncologist ordered an x-ray of his foot, since it had previously been radiated, which makes the bones more prone to breaking.
While we were there for the foot, we went ahead and did the hand, too.
No fracture in the foot, but the orthopedic surgeon wants to see him, so that’s this week. However, his finger does have a simple fracture. Eli told me, when we got the report, “See! I was right!” I admit, I was secretly pleased to have a “normal” medical problem to deal with where Eli is concerned.
That was Tuesday. I also spoke with the doctor at Texas Children’s Hospital on Tuesday. He’s concerned about there not being something to use as measurable disease and wanted to postpone the trial start date until middle of June. I talked him into checking out Eli’s scans and discussing the matter this coming week.
He needn’t have worried. I wish “normal” could have lasted longer, but Eli started to feel occasional pain in the left side of his torso on Wednesday. On Thursday night, I noticed a lymph node in his neck was large enough to be visible, which initiated a flurry of emails and phone calls with the oncologists. Labs were ordered, the pediatrician was seen, and the next visit with the radiation oncologist was moved up to Monday, rather than Tuesday.
Now Eli has pain more consistently, especially at night when he lays down. Today he started to ask for a PET/CT. The doctors were talking about doing scans, so he’ll probably get what he wants. Tonight Eli asked me if this is the kind of pain he will feel when the cancer is killing him.
At least the difficulty with not having measurable disease probably isn’t a problem anymore.