Life, Interrupted

As a high school English teacher and college counselor, Anne Harris ’93 thought she understood stress and anguish.

Until her two-year-old was diagnosed with leukemia.

By Anne Harris ’93
Photographs by Catherine Karnow

A few minutes before 1:00 p.m., I dashed across the sun-dappled quad of a Bay Area independent school, racing to get to class on time, just like I always did. I remember one of my English students, a junior, speeding past me and teasing—“Hey Ms. Harris, if I get here before you do, I’m not late!” It was a warm May afternoon in northern California, one of those days that offered a sneak preview of the summer months lying just out of reach, and as I entered the classroom, I thought quickly about my two-year-old son, Noah, who was playing just a few hundred yards away at the school’s day care.

No doubt he was enjoying the afternoon, too, but unlike my students—who were consumed by AP exams, looming SATs, and that day’s focus, King Lear—Noah’s biggest concern at the time was the biting caterpillars that dropped from the campus’ oak trees and found their way into the folds of his clothing. 

He didn’t cruise by the classroom’s window that day, which he often did with his day-care cohort, offering a quick wave and a smile that would melt your heart. And to tell you the truth, it didn’t faze me that he hadn’t. Perhaps I was so focused on Lear or what I knew would be waiting for me back in my office, where I pulled double-duty as a college counselor. It was May after all, a time of angst for many students (and their parents), as they obsessed over college waiting lists.

When I walked into my office, I was greeted by the furious blinking of the message light on my telephone, an incessant beacon signaling, what, on the other end? Angry parent? Tearful student? I plopped into my chair, picked up the phone, and was reaching to dial my voice mail when a colleague stuck her head in the doorway and said kindly but with concern, “Hey, listen, don’t worry, but the day care keeps calling and wants you to come pick up Noah. Right away. He’s sick.”

I felt deflated. How was I going to do this? Families were already on campus to meet with me, and in high-stakes college counseling you don’t just miss a meeting, even if your toddler is vomiting on the playroom floor. You call a local relative, or see if a colleague can pick him up, but you’d better have an emergency if you’re going to miss a whole afternoon just like that.
Fortunately, my mom was nearby and she offered to pick up Noah. Apparently, Noah hadn’t had such a fun day after all and was feverish. But since he had had various illnesses all year, I figured this was another notch on our trunk of ongoing day-care health woes that had included hand, foot, and mouth disease, and the notorious caterpillar welts. I figured this was another 24-hour flu, and we’d ride it out. My college counseling families never needed to know, and I felt enormous relief.

Crisis averted. Or so I thought.

In the days that followed, Noah’s fevers went up, not down, hitting 102, 103, then vanishing one day before raging back the next. One day, the mercury hit 106. I had no idea what to do. People died at temperatures of 106, or got brain fevers, like in Brontë novels. I gave Noah some Motrin, put cool cloths on him, and in the coming days took him in for blood tests, sinus tests, viral tests, chest x-rays, and physicals, but nothing yielded more than assessments of unknown viral illness. Nobody in my family could believe that some virus would cause weeks of fevers like that, but we were told that it was not uncommon.

In late June we were advised to test Noah’s blood again. He was thin and weak and still had daily fevers. My mother thought Noah was going to die. I was just riding out the virus, trying to keep my aspect up at work, talking about SATs, and helping plan schedules. I didn’t know what else to do. One Saturday, my husband Charles and I took our shivering, whimpering child to a local hospital for more tests. On our way out, we discovered that our car had a flat tire. Exhausted, I began to weep. Noah and Charles would go home with my parents; I’d wait for the tow truck.

When I got home an hour or so later, no one was there. Before the strangeness of an empty house could sink in, the phone rang. It was Noah’s pediatrician, saying something about needing to get to Stanford, immediately, to see an oncologist, and to ... to ... what? She said other things, but after hearing the “O” word, nothing registered. I don’t remember driving to the emergency room—it was one of those drives where, upon arriving at your destination, you question what superhuman force steered the wheel, turned corners, or stopped at lights. Noah, Charles, and my mother were there—the adults were sobbing—and all I could hear was a word that was miles away from my Middlebury and graduate school lit-crit vocabulary, a word that made me feel violently ill.
Leukemia.

Our crying continued nonstop for a week. One evening, my husband and I were sitting on the floor in Noah’s room, when Charles whispered through tears: “We might lose our little boy.” I remember looking at him as if he had just uttered the most unspeakable, most heinously criminal falsehood in all history. It was not okay to say such things. It was not okay to think them. I looked at my husband in horror. I felt as if he had been abducted and replaced by someone who actually believed the words certain people referred to my son with, words like bone marrow aspiration, 24 percent blast cells, acute lymphocytic leukemia, chemotherapeutic agents, cognitive long-term effects. Clearly, we were on another planet. We were not in Noah’s nursery—Noah, whom we named for his gentle, sweet, loving soul—holding his toys, looking at his beautiful picture, crying our hearts out.

But gradually, the words started to stick. They began to erupt from my own mouth, rooting themselves in my very thoughts. And so we made that transition, a transition too many families have to make, and we did what one does to survive on a new planet. We climbed out of ourselves with the mission of making it okay for our son. Adaptation is a form of survival; every effort became devoted to that cause. The hospital had to be fun. We forced it to be fun. It was a sad, desperate kind of enjoyment at the beginning, but we did it. All the oncology families do it, supermen and superwomen protecting the one aspect of their children they can: their spirits. We ran Noah around the halls with his IV, taught him to wrap his baby fingers around the pole so he could surf by the nursing station, started a Thomas the Train collection that ran extremely well along the pediatric oncology windowsills, and started making this life the norm. It kept our own hysteria in check, for the most part, anyway. Even with streams of poisons entering Noah’s veins, and a 4th of July celebrated on the hospital rooftop, Noah smiled and talked about the famous honey-loving bear he called Nee-poop, and about the rescue “Helicocks” he saw landing outside the windows. We got real smiles amid the nausea, the mouth sores, the intestinal pain, the side effects, the steroid rage fits, and the inevitable hair loss.

Then suddenly, in the middle of feeling a new but tenuous kind of balance, Noah’s diagnosis changed. Having been called into the clinic, I’d been pacing the hallway with Noah for six hours when two doctors we’d never seen before came by and said—way too quickly, too factually—that Noah’s original diagnosis, which we’d actually started feeling optimistic about, was wrong. Wrong? How much chemotherapy had Noah had in the last two weeks? How many bone marrow aspirations and lumbar punctures had he done under general anesthesia? What was going on?! I was sure that I had just cracked my head open in a bathroom and was hallucinating. But the doctors threw more terrible, incomprehensible words at us, and bound us like sorcerers using evil magic to freeze our motion: extreme high-risk status, new pH+ diagnosis, chromosomal anomaly, bone marrow transplant, low survival rates, have a good night. We staggered out and made calls that were only choking sounds over the receiver. 

That night, my husband and I turned to the Internet and subjected ourselves to the tyranny of information: the most recent reputable studies placed our son in a 5 to 15 percent survival category on even the most potent chemotherapies available, given his revised diagnosis of Philadelphia-Positive ALL, an extremely rare and treatment-resistant leukemia.

Despair is painful. We stared at each other. My husband’s devastation was complete, at least as far as I could see. I thought about our two-year-old confronting excruciating pain for the next three years, only to face odds worse than competitive undergraduate admission in terms of his chances of living. Over the next dark weeks, I actually started to feel cursed, half expecting to see Zeus, or some primeval deity of revenge, perched on our roof. Goddamned caterpillars, I even thought one day. Someone had mentioned that strange illnesses could come from insect and critter bites. What the hell. Let paranoia reign.

We launched a search for compatible bone marrow. A courtesy bone marrow transplant consult aimed at teaching us about the potential benefits of BMT wound up being a searing torture session. The constant references to siblings Noah didn’t yet have, and how much more promising a sibling match would have been, left us sick and furious. Even if the doctor had known that I had recently lost a baby who would have been born days from then, not to mention a previous one who would have been born the prior April, her mood and tone would still have been heartless. With this added agony in recent memory, it was simply intolerable for us. We were beside ourselves, and our son still had no donor.

Yet during that period, hope emerged. One evening, a stranger called to tell us about her young son, who shared Noah’s diagnosis and was thriving after an umbilical cord blood transplant. Until then, not one local caregiver had so much as intimated that there was potential for our son in cord blood transplant—yet here was a family calling us to swear by it, with a living, healthy, happy, young boy. We were advised by Noah’s physicians not to use anecdotal evidence to sway our decision-making; nobody in the medical field seemed to agree on what held most promise for him. So we took a leap of faith and traveled across the country to try and find answers. Our search took us to the Duke University Medical Center, a leader in experimental and high-risk, but highly promising, cord blood transplant. To be treated there would mean tearing our family apart, struggling to convince insurance companies to help cover up to $1,000,000 in expenses, leaving work, familiarity, friends and relatives, and most significantly, taking Noah to transplant, which has extreme up front fatality risks and no guarantees. Moving to North Carolina would also mean months—possibly years—away from home. But knowing that cord blood had donor flexibility that bone marrow did not, and that there was actually a good match available for Noah, we couldn’t discount it. 

For weeks, we agonized over the decision—some of Noah’s practitioners let us know that they considered cord blood transplant tantamount to signing a death warrant. But again, we leapt. In late October 2006, we prepared to decamp to North Carolina to initiate Noah’s new treatment. As we were boarding the jet in California, I recall praying that when we returned, all of us would be coming home.

Since it was close to Halloween, Noah wanted to wear his lion costume for his pre transplant workup. He was a huge hit, little face popping out of a furry head with a lollipop dangling from his mouth. He already had very little hair left from the recent chemotherapy, but sitting contentedly in his stroller, with his lion hood pulled over his balding head, he looked like any other kid, too eager to wait for Halloween day to dress up and eat candy.

But then we returned to reality. There were reams of paper to sign—papers that spoke of chilling side effects, about the “point of no return.” I particularly recall reading about the “conditioning regimen,” an aspect of transplant that strikes the most terror in recent memory, the regimen that prepares a child for transplant. It is the ablation, the complete destruction, of all indwelling immunity in your child. I have always seen the pen as a tool for inscribing cards, for writing old-fashioned letters, for commenting on papers and signing letters of recommendation. But never, ever, for signing away my child’s immune system.

But I did. I remember the nurses’ faces on our last clinic day before going into the transplant unit, and seeing kindness, pity, concern, and muffled hope in their eyes. They knew, way more than we did, what we were doing. We were going to a place where half the children wouldn’t make it—would either not leave the transplant unit alive or would lose their fights within days or months of discharge. This was in the nurses’ eyes. I saw it, and I smiled back, ignorant, defiant, And then I looked away.

I had always viewed transplants as invasive procedures with anesthesia, major incisions, and a complex ballet involving the shifting of organs from one person to another. But cord blood transplants are shockingly simple, though medically the most intense of all such procedures. The transplant itself is like a blood transfusion, with a very small bag of cord blood cells infusing into the patient over about 30 minutes. On transplant day, which parents and practitioners call DAY 0, the cells drip in and begin to find their way into the child’s empty immune system. Quite literally, the cells know what to do, and where to go. And everyone watches and waits.

Though no longer hospitalized, Noah still requires outpatient care. Some of the treatments can be agonizing. Above, he's photographed with his grandmother.

But there were good days to challenge the harrowing ones, days when Noah cruised down the halls in elation, and we had to chase after him with his IV; days when he played Bingo in the lounge; and the day of his confetti discharge party, an event where all the parents and nurses throw confetti over a child who is leaving the unit to continue outpatient care. I remember the hours right after transplant, wondering: will Noah make it to his discharge day? I remember watching with joy and deep longing as other children had their discharge parties. Nothing, no wedding, no celebration, can capture the spirit of that day—the day you take your child back home, even if home is just a temporary apartment, even to return for clinic follow-ups seven hours a day for the next three months. It didn’t matter; it just meant you were out, one step closer to a chance at survival.

Noah is back home in California now. He’s almost three years old, and while he continues to have some scary moments—dangerously low blood pressure, rapid heart rates, excruciating gastrointestinal episodes—the days are filled with a love and joy that is profound. Noah is, in his fundamental nature, a fun, happy, energetic, creative little man.

Sometimes I marvel at how we’ve kept it together. Support from family, friends—even perfect strangers—has been invaluable.  We’ve experienced acts of compassion that would challenge the most hardened cynic, and we owe a debt of gratitude that we’ll never be able to repay. My mother, in particular, has been indispensable; she’s done nothing less than keep us functioning.

At home: Noah and his mother, the author.