There was a round table near the isolation rooms, at the front of the unit, that was called the resident's table. On the wall next to it were bookshelves (pre-internet) of black binders that were full of papers that listed these protocols. They were abstracts. Name of the protocol, who developed it, formulary, target disease, results, and a lot of other stuff we were not qualified to understand. But, late at night when we couldn't sleep, Sandra and I (mostly me) would sit at that table and pour over those books. All I wanted was information, some control. I said pre-internet, but that wasn't true. This was 1991, so Al Gore had just recently invented it. I had a Dell 316sx (a 386 for those in the know) at home, a modem, and a telephone connection. I used to connect to the Internet via an ISP called Delphi. It was all DOS based then though, so if I wanted to go to the National Cancer Institute I had to type in the exact address. C://nci.gov. Then if I wanted to find the contents of the site I had to type in C://nci.gov/list. It may not sound hard, but back then it was a guessing game, all letters on a black background. You had to get the syntax correct and you didn't know what you were looking for. Literally, a blind maze, not unlike cancer therapy itself. Then a friend gave me a floppy disk with Windows 3.1 on it! This was the first version of Windows. They called it WYSIWYG, What You See Is What You Get. It had icons that made things easier, Netscape and AOL would soon follow.
I can't recall what made the first protocol ineffective. Or even how they figured that out. I assume it was all through blood work. All I know is that Spencer was losing his hair and losing weight. On the other hand he was a growing boy and his speaking was developing. Very contradictory and unsettling. One effect of the new protocols was that it sent his disease to a "place of refuge". This is not uncommon. The chemotherapy is attacking the disease and it will either die or go into hiding. The spine, testicals, ovaries, eyes are all places where disease might "hide". Spencer's went into hiding. In his left eye.
Bath time. The Broviac catheter is coming out of Spencer's chest and his eye is red from radiation therapy.
So in addition to chemotherapy, Spencer now had to also have radiation therapy to his eye. CHOP at that time did not have their own linear accelerator (I think that's what you call a "radiation machine") so we had to go next door to the Hospital of the University of Pennsylvania (HUP). That was weird on several levels. First, the waiting room was full of old people, no kids. So at first it was sad looks, "what a shames", etc. But once Spence engaged with someone, it was interesting and life affirming. He was still a kid. A funny and interesting one at that. That is the one saving grace of pediatric medicine. As difficult as it is to look at and consider sick children, they are WYSIWYG too. No bullshit, no guilt, no deception. If something hurts, they tell you. And they are naturally optimistic, they want to feel better and get better. The second weird thing was the mask. They made a fiberglass mask that he wore over his face to guide the radiation beam. It looked like a death mask. It disturbed me.
No comments:
Post a Comment