A couple of days after Dr. Tomita had operated to remove the tumor, an MRI showed that there was still a piece left in Isabel’s brain. The more cancer was taken out, the better the prognosis would be, so Isabel had to undergo another surgery, after which she returned to the I.C.U. Then, after she was transferred from the I.C.U. to neurosurgery, it was discovered that her cerebrospinal fluid was still not draining: an external ventricular drain was put in, and a passage for drainage was surgically opened in her brain. She had fever again. The E.V.D. was taken out; her ventricles were enlarged and full of fluid, to the point of endangering her life, and her blood pressure was dropping. Undergoing yet another emergency scan, face upward in the MRI tunnel, she nearly choked, the vomit bubbling out of her mouth. Finally, a shunt was surgically implanted, allowing the fluid to drain directly into her stomach.
In less than three weeks, Isabel had undergone two brain resections—in which her cerebral hemispheres were parted to allow Dr. Tomita to access the region between the stem, the pineal gland, and the cerebellum and scoop out the tumor—and six additional surgeries to address the failure of the fluid to drain. A tube had been inserted into her chest so that chemotherapy drugs could be administered directly into her bloodstream. To top it all off, an inoperable peanut-size tumor was now detected in her frontal lobe, and the pathology report confirmed that the cancer was indeed A.T.R.T. Chemo was set to start on August 17th, a month after the diagnosis, and Isabel’s oncologists, Dr. Jason Fangusaro and Dr. Rishi Lulla, did not wish to discuss her prognosis. We did not dare press them.
THE DIFFERENT SECTIONS OF THE BRAIN: Most of the above mentioned parts of the brain were produced early in evolution but the higher mammals especially humans went on to produce a sort of "thinking cap" on top of these parts.
On Saturday, July 17th, Dr. Tomita and his neurosurgical team implanted an Ommaya reservoir in Isabel’s head, to help drain and relieve the pressure from the accumulated cerebrospinal fluid. When Isabel was returned to her hospital room on the neurosurgery floor, she kicked off her blanket, as she was wont to do; we took this 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, which was scheduled for the end of the week. Teri’s parents were in town, because her sister had given birth to her second son on the day of Isabel’s checkup—too concerned about Isabel, we had hardly paid attention to the new arrival in the family—and Ella had spent the weekend with her grandparents, barely noticing the upheaval or our absence. Tuesday afternoon was sunny, and we all went out for a walk, Isabel strapped to Teri’s chest. That night, we rushed to the emergency room, because Isabel had developed a fever; it was likely that she had an infection, which is not uncommon after the insertion of a foreign object—in this case, the Ommaya—in a child’s head.
Atypical teratoid rhabdoid tumor is so rare that there are few chemotherapy protocols specifically designed for it. Many of the available protocols are derived from treatments for medulloblastomas and other brain tumors, modified, with increased toxicity, to counter A.T.R.T.’s vicious malignancy. Some of those protocols involve focussed-radiation treatment, but that would be detrimental to the development of a child of Isabel’s age. The protocol that Isabel’s oncologists decided on consisted of six cycles of chemotherapy of extremely high toxicity, the last of which was the most intense. So much so, in fact, that Isabel’s own immature blood cells, extracted earlier, would have to be reinjected after that cycle, in a process called stem-cell recovery, to help her depleted bone marrow to recover.
Dr. Tadanori Tomita, the head of pediatric neurosurgery, read the CT scans for us: the ventricles of Isabel’s brain were enlarged, full of fluid. Something was blocking the draining channels, Dr. Tomita said, possibly “a growth.” An MRI was urgently needed.