The following morning, Isabel underwent an ultrasound exam of her head, crying in Teri’s arms throughout. Shortly after we came back home, Dr. G called and told us the ultrasound showed that Isabel was hydrocephalic and that we needed to go to an emergency room immediately — it was a life-threatening situation.
The ER examination room at Chicago’s Children’s Memorial Hospital was kept dark, as Isabel was about to have a CT scan and the doctors were hoping she would fall asleep by herself so they wouldn’t have to drug her. But she was not allowed to eat, because there was a possibility of a subsequent MRI, and she kept crying with hunger. A resident gave her a colorful whirligig and we blew at it to distract her. In the horrifying dimness of possibilities, we waited for something to come to pass, all too afraid to imagine what it might be.
Dr. Tomita, the head of pediatric neurosurgery, read the CT scans for us: Isabel’s ventricles were enlarged, full of fluid. Something was blocking the draining channels, Dr. Tomita said, possibly “a growth.” An MRI was urgently needed.
Teri held Isabel in her arms as the anesthetics were administered; her head nearly instantly fell, heavy on Teri’s chest. We handed her over to the nurses for an hourlong MRI; this would be the first time we delivered her to complete strangers and walked away to fear the news. The cafeteria in the hospital basement was the saddest place in the world — and forever it shall be — with its grim neon lights and gray tabletops and the diffuse foreboding of those who stepped away from suffering children to have a grilled cheese sandwich. We didn’t dare speculate about the results of the MRI; we suspended our imagination, anchored in the moment, which, terrifying as it was, hadn’t yet extended into a future.
Called up to medical imaging, we ran into Dr. Tomita in the overlit hallway. “We believe,” he said, “that Isabel has a tumor.” He showed us the MR images on the computer: right at the center of Isabel’s brain, lodged among her cerebellum, brain stem, and hypothalamus, there was a round thing. It was the size of a golf ball, Dr. Tomita suggested, but I’d never cared about golf and couldn’t envision what he was saying. He would remove the tumor, and we would find out what kind it was only after the pathology report. “But it looks like a teratoid,” he said. I couldn’t comprehend the word teratoid either — it was outside my language and experience, belonging to the domain of the unimaginable and incomprehensible, the domain into which Dr. Tomita was now guiding us.
Isabel was asleep in the recovery room, motionless, innocent; Teri and I kissed her hands and forehead. In twenty-four hours or so, our existence was horribly and irreversibly transformed. At Isabel’s bedside, we wept within the moment that was dividing our life into before and after, whereby the before was forever foreclosed, while the after was spreading out, like an exploding twinkle-star, into a dark universe of pain.
Still unsure of the word Dr. Tomita had uttered, I looked up brain tumors on the Internet and found an image of a tumor nearly identical to the one in Isabel’s brain. I recognized the bastard when I saw it, comprehending the word teratoid at that moment. The full name was, I read, “atypical teratoid rhabdoid tumor” (ATRT). It was highly malignant and exceedingly rare, a freak occurring in only 3 out of 1,000,000 children, representing about 3 percent of pediatric cancers of the central nervous system. The survival rate for children under three was less than 10 percent. There were more discouraging statistics available for me to ponder, but I recoiled from the screen, deciding instead to talk to and trust Isabel’s doctors alone — never again would I research her situation on the Internet. I had a hard time telling Teri about what I had read, because I wanted to protect her from all the horrid possibilities. I understood already that managing knowledge and imagination was necessary for not losing our minds.
On Saturday, July 17, Dr. Tomita and his neurosurgical team implanted an Ommaya reservoir in Isabel’s head, so as to help drain and relieve the pressure from her accumulated cerebrospinal fluid (CSF). When she returned to her hospital bed on the neurosurgery floor, Isabel kicked off her blanket, as she had been wont to do; we took it as an encouraging sign, a hopeful first step on a long journey. On Monday, she was released from the hospital to wait at home for the surgery that would remove the tumor, scheduled for the end of the week. We went home to wait.
Teri’s parents were in town, because Teri’s sister had given birth to her second son on the day of Isabel’s checkup — too busy with Isabel’s illness, we hardly paid attention to the new arrival in the family — and Ella spent the weekend with her grandparents, barely noticing the upheaval and our related absence. That sunny Tuesday afternoon, we all went out for a walk, Isabel strapped to Teri’s chest. The same night, we rushed to the emergency room because Isabel developed a fever, which suggested an infection, not uncommon after the insertion of a foreign object — in this case, the Ommaya — in a child’s head.
She received antibiotics for infection and underwent a scan or two; the Ommaya was removed. On Wednesday afternoon, I went back home from the hospital to be with Ella, as we’d promised we would take her to our neighborhood farmer’s market — keeping promises was essential in the ongoing catastrophe. We bought blueberries and peaches; on the way home, we picked up some first-rate cannoli from our favorite pastry shop. I talked to Ella about Isabel’s being sick, about her tumor, and told her she would have to stay with Grandma that night. She didn’t complain or cry, able as well as any three-year-old to understand the difficulty of our predicament.
As I was walking to the car, the cannoli in hand, to get back to the hospital, Teri called and urged me to get there as soon as possible. Isabel’s tumor was hemorrhaging; emergency surgery was required. Dr. Tomita was waiting to talk to me before going with Isabel into the operating room. It took me about fifteen minutes to get to the hospital, through traffic that existed in an entirely different space-time, where people did not rush crossing the streets and no infant life was in danger, where everything turned away quite leisurely from the disaster.
In the hospital room, the box of cannoli still in my hand, I saw Teri weeping over Isabel, who was deathly pale. Dr. Tomita was there, the images on the screen already pulled up and showing the hemorrhage in our daughter’s head. It seemed that once the CSF drained, the tumor had expanded into the vacated space and its blood vessels started bursting. Immediate removal of the tumor was the only hope, but there was a distinct risk of Isabel’s bleeding to death. A child of her age had no more than a pint of blood in her body, Dr. Tomita told us, and continuous transfusion might not suffice.
Before we followed Isabel into pre-op, I put the cannoli into the fridge in her room. The selfish lucidity of that act produced an immediate sense of guilt. Only later would I understand that absurd act as related to some form of desperate hope: the cannoli might be necessary for our future survival.