At first, her brother had no name, let alone a physical aspect. When asked what he was called, she’d respond, “Googoo Gaga,” which was the nonsensical sound Malcolm, our five-year-old nephew and her favorite cousin, used when he didn’t know the word for something. Since Charlie Mingus is practically a deity in our household, we suggested to Ella the name Mingus, and so Mingus her brother became. Soon thereafter, Malcolm gave her an inflatable doll of a space alien, which Ella subsequently elected to embody the existentially slippery Mingus. Though Ella would often play with her blown-up brother, the alien’s physical presence was not always required for her to issue pseudoparental orders to Mingus, or tell a story of his escapades. While our world was being reduced to the claustrophobic size of ceaseless dread, Ella’s world was expanding.
* * *
An atypical teratoid rhabdoid tumor is so rare that there are few chemotherapy protocols specifically designed for it, as it’s very difficult to assemble a group of affected children big enough for a clinical trial. Many of the available protocols are derived from treatments for medulloblastomas and other brain tumors, modified with increased toxicity to counter the ATRT’s vicious malignancy. Some of those protocols involve focused radiation treatment, but those would have significantly and detrimentally affected development in a child of Isabel’s age. The protocol that Isabel’s oncologists decided upon was of extremely high toxicity, consisting of six cycles of chemotherapy, the last one being the most intense. So much so, in fact, that Isabel’s own immature blood cells, extracted earlier, would have to be reinjected after the last cycle, in a process called stem-cell recovery, to help her depleted bone marrow recover.
Throughout the chemo, she would also have to receive transfusions of platelets and red blood cells, while her white-blood-cell count would need to recover by itself each time. Her immune system would be temporarily annihilated, and, as soon as it recovered, another chemo cycle would begin. Because of her extensive brain surgeries, she could no longer sit or stand, and hence would have to undergo occupational and physical therapy, between the bouts of chemo. Sometime in the uncertain future, it was suggested, she might be able to return to the developmental stage expected of her age.
When her first chemo cycle began, Isabel was ten months old and weighed only sixteen pounds. On her good days she smiled heroically, more than any other child I’ve ever known, more than I ever will. Few though they may have been, the good days enabled us to project some kind of future for Isabel and our family: we scheduled her occupational and physical therapy appointments; we let our friends and family know what days would be good for visits; we put things down on the calendar for the upcoming couple of weeks. But the future was as precarious as Isabel’s health, extending only to the next reasonably achievable stage: the end of the chemo cycle; the recovery of her white-blood-cell count; the few days before the next cycle when Isabel would be as close to being well as possible. I prevented my imagination from conjuring anything beyond that, refusing to consider either possible outcome of her illness. If I found myself envisioning holding her little hand as she was expiring, I would delete the vision, often startling Teri by saying aloud to myself: “No! No! No! No!” I blocked imagining the other outcome too — her successful survival — because some time ago, I’d come to believe that whatever I wanted to happen would not happen, precisely because I wanted it to happen. I’d therefore developed a mental strategy of eliminating any desire for good outcomes, as if my wishing would expose me to the hostile, spiteful forces that put up this ruthless universe. I dared not imagine Isabel’s survival, because I thought I would thus jinx it.
* * *
Shortly after the start of Isabel’s first chemo cycle, a well-intentioned friend of mine called and the first thing she asked was: “So, have things settled into some kind of routine?” Isabel’s chemotherapy did, in fact, offer a seemingly predictable pattern. The chemo cycles had an inherent repetitive structure: the scheduled chemo drugs administered in the same order; the expected reactions: vomiting, loss of appetite, collapse of the immune system; the intravenous TPN (total parenteral nutrition) given because she was unable to eat; the antinausea drugs, antifungal drugs, and antibiotics administered at regular intervals; the expected transfusions; a few visits to the emergency room due to fever; the gradual recovery measured by rising blood counts; a few bright days at home. Then back in the hospital for a new cycle.
If Isabel and Teri, who seldom left her side, were in the hospital for the chemo, I’d spend the night at home with Ella, drop her off at school, then bring coffee and breakfast to my wife and, while she was having a shower, sing to or play with my daughter. I’d clean up Isabel’s vomit or change her diapers, keeping them for the nurse so they could be weighed. In pseudoexpert lingo, Teri and I would discuss the previous night, what was expected that day; we’d wait for the rounds, so we could ask our difficult questions.
The human sense of comfort depends on repetitive, familiar actions — our minds and bodies strive to be accustomed to predictable circumstances. But no lasting routine could be established for Isabel. An illness such as ATRT causes a breakdown of all biological, emotional, and family routines, where nothing goes the way you expect it, let alone want it to. A day or two after the beginning of her TPN, while we were at home, Isabel unexpectedly went into anaphylactic shock, swelling rapidly and having trouble breathing, and so we rushed her to the emergency room. Besides the sudden catastrophic events, there was the daily helclass="underline" her coughing seldom ceased, which would often lead to vomiting; she’d have rashes and constipation; she’d be listless and weak; at the first sign of fever, we’d go to the ER; we could never tell her it would get better. No amount of repetition can get you used to that. The comfort of routines belonged to the world outside.
One early morning, driving to the hospital, I saw a number of able-bodied, energetic runners progressing along Fullerton Avenue toward the sunny lakefront, and I had an intensely physical sensation of being inside an aquarium: I could see outside, the people outside could see me inside (if they somehow chose to pay attention), but we lived and breathed in entirely different environments. Isabel’s illness and our experience had little connection to, and even less impact on, the world outside. Teri and I were gathering undesirable, disheartening knowledge that had no application whatsoever in the outside world and was of no interest to anyone in it — the runners ran dully along into their betterment; people reveled in the stable banality of routine living; the torturer’s horse kept scratching its innocent behind on a tree.