The Book of My Lives

THE AQUARIUM

On July 15, 2010, my wife, Teri, and I took our younger daughter, Isabel, for her regular medical checkup. She was nine months old and appeared to be in perfect health. Her first teeth had come in, and she was now regularly eating with us at the dinner table, babbling and shoveling rice cereal into her mouth by herself. A cheerful, joyous child, she had a fondness of people, which she had not, the joke went, inherited from her congenitally grumpy father.

Teri and I always went together to all the doctor’s appointments for our children, and this time we also took along Ella, Isabel’s big sister, who was almost three years old. The nurse at Dr. Gonzalzles’s office took Isabel’s temperature and measured her weight and her height and head circumference, and Ella was happy that she didn’t have to undergo the same ordeal. Dr. G — as we called him — listened to Isabel’s breathing, checked her eyes and ears. On his computer, he pulled up Isabel’s development chart: her height was within the expected range; she was a bit underweight. Everything seemed fine, except for her head circumference, which exceeded two standard measures of deviation. Dr. G was concerned. Reluctant to send Isabel for an MRI, he scheduled an ultrasound exam for the following day.

Back at home, Isabel was restless and cranky; she had a hard time falling and staying asleep. If we hadn’t gone to Dr. G’s, we would’ve thought that she was simply tired, but now we had a different interpretative framework, founded on fear. Later that night, I took Isabel out of our bedroom (she always slept with us) to calm her down. In the kitchen, I sang to her my entire lullaby repertoire: “You Are My Sunshine”; “Twinkle, Twinkle, Little Star”; and a Mozart song I’d learned as a child and whose lyrics in Bosnian I miraculously remembered. Singing the three lullabies in a relentless loop usually worked, but this time it took a while before she laid her head on my chest and quieted down. It felt as though she were comforting me, telling me somehow that everything would be all right. Worried as I was, I imagined a future in which I would one day recall that moment and tell someone — Isabel herself, perhaps — how it was she who calmed me down. My daughter, I would say, took care of me, and she was but nine months old.

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.

The surgery was to last four to six hours; Dr. Tomita’s assistant would keep us updated. We kissed Isabel’s parchment-pale forehead and watched her be wheeled into the unknown by a gang of masked strangers. Teri and I returned to the room to wait and see if our child would live through the night. We alternately wept and kept silent, always embraced. The assistant called us after a couple of hours, and said that Isabel was doing fine. We shared some cannoli, not to celebrate but to keep ourselves going — we’d had very little food and sleep. The lights in the room were dimmed; we were on a bed behind a curtain; for some reason, no one bothered us. We were far away from the world where there were farmer’s markets and blueberries, where nurses changed shifts and gossiped, where other children were born and lived, where grandmothers put granddaughters to sleep. I had never felt as close to another human being as I did that night to my wife — transcendent love would be a plain way to describe what I felt.

Sometime after midnight, the assistant called to say that Isabel had made it through the surgery. We met Dr. Tomita outside the waiting room, in which some other unfortunate parents slept on uncomfortable sofas, coiled into their own nightmares. Dr. Tomita thought he’d removed most of the tumor; as luck would have it, the tumor did not burst, so blood did not flood the brain, which would’ve been lethal. Isabel did well and should be transferred to the Intensive Care Unit shortly, he said, where we could see her. I remember that moment as a relatively happy one: Isabel lived. Only the imminent outcome was relevant; all we could hope for was reaching the next step, whatever it was. The future was capped; there could be no life beyond Isabel’s being alive now.

At the ICU, we found her entangled in a web of IV tubes and monitor wires, paralyzed by rocuronium (called “the rock” by everyone there), which had been given to prevent her from ripping out her breathing tubes. We spent the night watching her, kissing the fingers on her limp hand, reading or singing to her. The next day, I set up an iPod dock and played music, not only in a willfully delusional belief that music is good for a painful, recovering brain, but also to counter the soul-crushing hospital noise: the beeping of monitors, the wheezing of the breathing machinery, the indifferent chatter of nurses in the hallway, the siren that would go off whenever a patient’s situation abruptly worsened. To the accompaniment of Bach cello concertos or Mingus piano pieces, my heart registered every dip of Isabel’s heart rate, every change in her blood pressure. I couldn’t take my eyes off the cruelly fluctuating numbers on the monitors, as though sheer staring could influence the outcome. All we could ever do was wait.

* * *

There’s a psychological mechanism, I’ve come to believe, that prevents most of us from imagining the moment of our own death. For if it were possible to imagine fully that instant of passing from consciousness to nonexistence, with all the attendant fear and humiliation of absolute helplessness, it would be very hard to live, as it would be unbearably obvious that death is inscribed in everything that constitutes life, that any moment of our existence is a breath away from being the last one. We would be continuously devastated by the magnitude of that inescapable moment, so our minds wisely refuse to consider it. Still, as we mature into mortality, we gingerly dip our horror-tingling toes in the void, hoping that the mind will somehow ease itself into dying, that God or some other soothing opiate will remain available as we venture deeper into the darkness of nonbeing.

But how can you possibly ease yourself into the death of your child? For one thing, it is supposed to happen well after your own dissolution into nothingness. Your children are supposed to outlive you by several decades, in the course of which they’ll live their lives, happily devoid of the burden of your presence, eventually completing the same mortal trajectory as their parents: oblivion, denial, fear, the end. They’re supposed to handle their own mortality, and no help in that regard (other than forcing them to confront death by way of your dying) can come from you — death ain’t a science project. And even if you could imagine your child’s death, why would you?

But I’d been cursed with a compulsively catastrophic imagination, and had often involuntarily imagined the worst. I used to envision being run over by a car whenever I crossed the street, complete with a vision of the layers of dirt on the car’s axle as its wheel crushed my skull. Or, stuck on a subway with all the lights out, I’d envision a deluge of fire advancing through the tunnel toward the train. Only after I met Teri did I manage to get my tormentful imagination under control. And after our children were born, I learned to quickly delete the visions of something horrible happening to them. A few weeks before Isabel’s cancer was diagnosed, I’d noticed that her head was large and somewhat asymmetrical, and a question popped into my head: What if she has a brain tumor? But before my mind ran off with all the frightening possibilities, I talked myself out of considering them. She appeared to be in perfect health. Even if you could imagine your child’s grave illness, why would you?

* * *

A couple of days after Isabel’s first resection, an MRI showed that there was a piece of tumor left in her brain. The more of the cancer taken out, the better her survival prognosis would be, so Isabel had to undergo another surgery, after which she returned to the ICU. Then, after she was transferred from the ICU to neurosurgery, her CSF was still not draining: an external ventricular drain (EVD) was put in, while a passage in her brain was surgically opened for drainage. She had fever again. The EVD was taken out; her ventricles became enlarged and full of fluid again, to the point of endangering her life; her blood pressure was dropping. Undergoing yet another emergency scan, facing upward in the MRI tunnel, she nearly choked, her vomit bubbling out of her mouth. Finally, a shunt was surgically implanted, allowing the CSF to drain directly into her stomach. In less than three weeks, Isabel had undergone two resections — whereby her cerebral hemispheres had to be parted to allow Dr. Tomita to access the region where the stem, the pineal gland, and the cerebellum meet, and scoop out the tumor — with six additional surgeries to address the failure of her CSF to drain. A tube had been inserted in her chest for administering chemotherapy drugs directly into her bloodstream. To top it all, an inoperable peanut-size tumor was detected in her frontal lobe, while the pathology report confirmed that the cancer was indeed ATRT. The chemo was set to start on August 17, a month after the diagnosis, and her oncologists, Dr. Fangusaro and Dr. Lulla, did not wish to discuss her prognosis. We did not dare press them.

* * *

During the first few weeks after Isabel’s diagnosis, we did not eat or sleep much. Most of the time Teri and I were at the hospital, at Isabel’s side. We tried to spend time with Ella, who was not allowed into the ICU, though she could visit Isabel in the neurosurgery ward, where she made Isabel smile every time they were together. Ella seemed to be handling the catastrophe pretty well. Supportive family and good friends came through our house, distracting her, helping us to cover up our continuous absence. When we talked to her about Isabel’s illness, Ella listened, wide-eyed, concerned, and perplexed.

It was sometime in the first few weeks of the ordeal that Ella began talking about her imaginary brother. Suddenly, in an onslaught of her words we would discern stories about a brother who was sometimes a year old, sometimes in high school, and who would occasionally travel, for some obscure reason, to Seattle or California, only to return to Chicago to be featured in yet another adventurous monologue of Ella’s.

It is not unusual, of course, for children of Ella’s age to have imaginary friends or siblings. The creation of an imaginary character is related, I believe, to the explosion of the child’s newly acquired linguistic ability, which occurs between the ages of two and four, and rapidly creates an excess of language that she may not have enough experience to match. The child has to construct imaginary narratives to try out the words she suddenly possesses. Ella now knew the word California but had no experience in any way related to it, nor could she conceptualize it in its abstract aspect, in its Californianess. Hence her imaginary brother had to be deployed to the sunny state, which allowed Ella to talk at length as if she knew California — the acquired words demanded the story, the language necessitated a fictional landscape. At the same time, the surge in language at this age creates a distinction between exteriority and interiority; the child’s interiority is now expressible and thus possible to externalize; the world doubles. Ella could now talk about what was here and about what was elsewhere; the language made here and elsewhere continuous and simultaneous. Once, at our dinner table, I asked Ella what her brother was doing at that very moment. He was in her room, she said matter-of-factly, throwing a tantrum.

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 hell: 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.

Isabel’s ATRT made everything inside our life intensely, heavily real. Everything outside was not so much unreal as devoid of comprehensible substance. When people who didn’t know about Isabel’s illness asked me what was new, and I’d tell them, I’d witness their rapidly receding to the distant horizon of their own lives, where entirely different things mattered. After I told my tax accountant that Isabel was gravely ill, he said: “But you look good, and that’s the most important thing!” The world sailing calmly on depended on the language of functional platitudes and clichés that had no logical or conceptual connection to our catastrophe.

I had a hard time talking to well-wishing people and an even harder time listening to them. They were kind and supportive, and Teri and I endured their babbling without begrudging it, as they simply didn’t know what else to say. They protected themselves from what we were going through by limiting themselves to the manageable domain of vacuous, overworn language. But we were far more comfortable with the people wise enough not to venture into verbal support, and our closest friends knew that. We much preferred talking to Dr. Lulla or Dr. Fangusaro, who could help us understand things that mattered, to being told to “hang in there.” (To which I would respond: “There is no other place to hang.”) And we stayed away from anyone who, we feared, might offer us the solace of that supreme platitude, God. The hospital chaplain was prohibited from coming anywhere near us.

One of the most common platitudes we heard was that “words failed.” But words were not failing Teri and me at all. It was not true that there was no way to describe our experience. Teri and I had plenty of language to talk to each other about the horror of what was happening, and talk we did. The words of Dr. Fangusaro and Dr. Lulla, always painfully pertinent, were not failing either. If there was a communication problem it was that there were too many words; they were far too heavy and too specific to be inflicted upon others. (Take Isabel’s chemo drugs: vincristine, methotrexate, etoposide, cyclophosphamide, cisplatin — all creatures of a particularly malign demonology.) If something was failing it was the functionality of routine, platitudinous language — the comforting clichés were now inapplicable and perfectly useless. We instinctively protected other people from the knowledge we possessed; we let them think that words failed, because we knew they didn’t want to be familiar with the vocabulary we used daily. We were sure they didn’t want to know what we did; we didn’t want to know it either.

There was no one else on the inside with us (and we certainly didn’t wish anybody’s children to have ATRT so we could talk to them about it). In “The Resource Guide for Parents of Children with Brain and Spinal Cord Tumors,” which we were given to help us cope with our child’s brain tumor, ATRT was “not discussed in detail” because it was too rare; in point of fact, it was entirely elided. We could not communicate even within the small group of families with children beset by cancer. The walls of the aquarium we were hanging in were made of other people’s words.

* * *

Meanwhile, Mingus allowed Ella to practice and expand her language, while providing her with company and comfort Teri and I were barely able to provide. On the mornings when I drove her to school, Ella would offer run-on tales of Mingus, the recondite plots of which were sunk deep in her verbal torrent. Now and then, we’d witness her playing with Mingus — the alien or the fully imaginary one — administering fictional medicine or taking his temperature, using the vocabulary she had collected on her visits to the hospital, or from our talking about Isabel’s illness. She’d tell us that Mingus had a tumor, was undergoing tests, but was going to get better in two weeks. Once Mingus even had a little sister named Isabel — entirely distinct from Ella’s little sister — who also had a tumor and was, also, going to get better in two weeks. (Two weeks, I recognized, was just about the length of the future Teri and I could conceive of at the time.) Whatever accidental knowledge of Isabel’s illness Ella was accumulating, whatever words she was picking up from participating in our experience, she was processing through her imaginary brother. She clearly missed her sister, so Mingus gave her some comfort in that respect as well. She longed for our being together as a family, which was perhaps why one day Mingus acquired his own set of parents and moved out with them to a place around the corner, only to return to us the next day. She externalized her complicated feelings by assigning them to Mingus, who then acted upon them.

One day at breakfast, while Ella ate her oatmeal and rambled on about her brother, I recognized in a humbling flash that she was doing exactly what I’d been doing as a writer all these years: in my books, fictional characters allowed me to understand what was hard for me to understand (which, so far, has been nearly everything). Much like Ella, I’d found myself with an excess of words, the wealth of which far exceeded the pathetic limits of my biography. I’d needed narrative space to extend myself into; I’d needed more lives; I, too, had needed another set of parents, and someone other than myself to throw my metaphysical tantrums. I’d cooked up those avatars in the soup of my ever-changing self, but they were not me — they did what I wouldn’t or couldn’t. Listening to Ella furiously and endlessly unfurl the yarns of the Mingus tales, I understood that the need to tell stories is deeply embedded in our minds, and inseparably entangled with the mechanisms that generate and absorb language. Narrative imagination — and therefore fiction — is a basic evolutionary tool of survival. We process the world by telling stories and produce human knowledge through our engagement with imagined selves.

Whatever knowledge I’d acquired in my middling fiction-writing career was of no value inside our ATRT aquarium, however. I could not write a story that would help me comprehend what was happening. Isabel’s illness overrode any kind of imaginative involvement on my part. All I cared about was the hard reality of Isabel’s breaths on my chest, the concreteness of her slipping into slumber as I sang my three lullabies. I did not wish or dare to imagine anything beyond her smiles and laughter, beyond her present torturous, but still beautiful, life.

* * *

Isabel received the last drug (cisplatin) of her third cycle on a Sunday afternoon in October. We were hoping she could go home on Monday morning, at least for a few days. Ella came to see her that same afternoon and, as always, made her laugh by pretending to grab little chunks of her cheeks and eat them. After Ella left, Isabel was agitated on my chest. I recognized a pattern in her restlessness: watching the second hand on the big clock in the room, I realized that she was twitching and whimpering every thirty seconds or so. Teri summoned the nurse, who talked to the oncologist on call, who talked to the neurologist, who talked to someone else. They thought she was having microseizures, but it was not clear why this was happening. Then she went into a full-blown seizure: she stiffened, her eyes rolled up, her mouth foamed while she kept twitching. Teri and I held her hands and talked to her, but she was not aware of us. Urgently, she was transferred to the ICU.

The names of all the drugs she was given and all the procedures she underwent in the ICU are obscure to me now, as is most of that night — what is hard to imagine is hard to remember. Isabel’s sodium levels had precipitously dropped, which had caused the seizure; whatever they did to her stopped it. Eventually, breathing tubes were inserted and the rock was administered again. Isabel was going to stay in the ICU until her sodium levels stabilized.

But they never did. Though she came off the rock and the breathing tubes were taken out a couple of days later, she had to be constantly given sodium solution, at the expense of her TPN, without the levels ever returning to normal. On Halloween, while Teri was taking Ella trick-or-treating in our neighborhood, as had been promised, Isabel was restive again on my chest. The night before, which I’d spent at home with Ella, I’d had a dream in which Isabel was in my arms and then jerked violently back, as if in sudden pain, and I dropped her — I’d snapped out of the dream with a scream before she hit the ground. In the ICU room, I was desperately looping through the three lullabies, trying to calm her down. Even when she managed to fall asleep, I could feel her breathing stop only to start again, a frighteningly long moment later. The nurse on duty told me that sleep apnea was common in babies, and his obvious bullshit scared me more than it annoyed me. He informed the doctor on duty and what needed to be noted was duly noted. Soon thereafter, Teri and I switched, and I went home to be with Ella.

The phone rang in the middle of the night. Teri put Dr. Fangusaro on the phone to tell me that Isabel “had a really hard time” maintaining her blood pressure. I needed to come to the hospital as soon as possible.

Having dropped Ella off with my sister-in-law, I sped to the hospital. I found a crowd of the ICU staff outside Isabel’s room looking inside, where Isabel was surrounded by a pack of doctors and nurses. She was bloated, her eyelids swollen. Her little hands were stabbed with needles, as liquid was pumped into her to keep her blood pressure up. Dr. Fangusaro and Dr. Lulla sat us down to tell us that Isabel’s state was dire. Teri and I needed to tell them whether we would want them to try everything they could to save her. We said yes. They made it clear we would have to be the ones to tell them when to stop trying.

And now my memory collapses.

Teri is in the corner, weeping ceaselessly and quietly, the terror on her face literally unspeakable; the gray-haired attending doctor (whose name has vanished, though his face stares at me daily) is issuing orders as residents take turns compressing Isabel’s chest because her heart has stopped beating. They bring her back, as I’m wailing: “My baby! My baby! My baby!..” Then there is another decision Teri and I have to make: Isabel’s kidneys have stopped functioning; she needs dialysis and a surgical intervention on the spot is necessary to connect her to the dialysis machine — there is a good chance she might not survive the surgery. We say yes to it. Her heart stops beating again, the residents are compressing her chest. In the hallway outside, people unknown to me are rooting for Isabel, some of them in tears. “My baby! My baby! My baby!..” I keep howling. I hug Teri. Isabel’s heart starts beating again. The gray-haired doctor turns to me and says, “Twelve minutes,” and I cannot comprehend what he is saying. But then I realize: what he is saying is that Isabel was clinically dead for twelve minutes. Then her heart stops beating again, a young resident halfheartedly compressing her chest, waiting for us to tell her to stop. We tell her to stop. She stops.

* * *

In my eagerly, but not quickly enough, suppressed visions, I’d foreseen the moment of my child’s death. But what I’d imagined against my best efforts was a quiet, filmic moment in which Teri and I held Isabel’s hands as she peacefully expired. I could not have begun to imagine the intensity of the pain we felt as the nurses took out all the tubes and wires and everyone cleared out and Teri and I held our dead child — our beautiful, ever-smiling daughter, her body bloated with liquid and beaten by compressions — kissing her cheeks and toes. Though I recall that moment with absolute, crushing clarity, it is still unimaginable to me.

And how do you walk away from a moment like that? How do you leave your dead child behind and return to the vacant routines of whatever you might call your life? We put Isabel down on the bed, covered her with a sheet, signed whatever papers needed to be signed, packed all our stuff: her toys, our clothes, the iPod dock, the food containers, the debris of the before. Outside the room, somebody had put up a screen to give us privacy; all the good people who had rooted for Isabel were now gone. Carrying, like refugees, our large plastic bags full of stuff, we walked to the garage across the street, got into our car, and drove on the meaningless streets to my sister-in-law’s.

I don’t know what mental capacity is required for comprehending death — and I don’t know at what age one acquires it, if ever — but Ella seemed to possess it. When we told her that her little sister had died, there was a moment of clear understanding on Ella’s face. She started crying in a way that could only be described as unchildlike and said: “I want another little sister named Isabel.” We’re still parsing that statement.

Teri, Ella, and I — a family missing one — then went home. It was November 1, the Day of the Dead. A hundred and eight days had passed since Isabel’s diagnosis.

* * *

One of the most despicable religious fallacies is that suffering is ennobling, that it is a step on the path to some kind of enlightenment or salvation. Isabel’s suffering and death did nothing for her, or us, or the world. The only result of her suffering that matters is her death. We learned no lessons worth learning; we acquired no experience that could benefit anybody. And Isabel most certainly did not earn ascension to a better place, as there has never been a place better for her than Teri’s breast, Ella’s side, or my chest. Without Isabel, Teri and I were left with oceans of love we could no longer practice; we found ourselves with an excess of time we used to devote to her; we had to live inside a void that could be filled only by Isabel’s presence. Isabel’s indelible absence is now an organ in our bodies whose sole function is a continuous secretion of sorrow.

Ella talks about Isabel often. When she talks about her death she does so cogently, her words deeply felt; she knows what happened and what it all means; she is confronted by the same questions and longings as we are. Once, before falling asleep, she asked me: “Why did Isabel die?” Another time, she told me: “I don’t want to die.” Not so long ago, she started talking to Teri, out of the blue, about wanting to hold Isabel’s hand again, about how much she missed Isabel’s laughter. A few times, when we asked her if she missed Isabel, she refused to respond, exhibiting a kind of impatience that is entirely recognizable to us — what was there to talk about that was not self-evident?

Mingus is still good and well, going steadily about his alternative-existence business. Although he stays with us a lot, he lives around the corner yet again, with his parents and a variable number of siblings, most recently two brothers, Jackon and Cliff, and a sister, Piccadilly. He has had his own children — three sons, at one point, one of whom was called Andy. When we went skiing, Mingus preferred snowboarding. When we went to London for Christmas, Mingus went to Nebraska. He plays chess (“chest” in Ella’s parlance) pretty well, it seems. Sometimes he yells at Ella (“Shut up, Mingus!” she yells back); other times he loses his own voice, but then speaks in Isabel’s. He is also a good magician. With his magic wand, Ella says, he can make Isabel reappear.