1
My most enduring childhood memories of my mom are of her being sick. Of visiting her in the hospital with my older brother and two younger sisters. Of our grandmother coming to stay with us while our mom recuperated from breast cancer surgery. Of seeing her in bed at home with a soulful, sad look on her face as she tried to smile.
She had been ill, sometimes gravely, off and on while I was growing up. I’m pretty sure she first had breast cancer as early as 1958, when she was just thirty-two, though my memory is vague because I was only six then.
At the time, we were living in Laurel, Mississippi, far from where my parents grew up. My mom, Regina, the elder of two girls, was raised in modest circumstances in Norwalk, Connecticut, the daughter of a seamstress and a hospital orderly who had come to the United States from southern Italy in the early twentieth century. My dad, Angelo, five years older than my mom, was the eldest of seven children, and the son of Italian immigrants as well. According to family lore, his father had fled Sicily after a dispute with a local mafioso. After living for a brief period in the tenements of New York City, the family settled in the Catskills, on the outskirts of Middletown, New York, on a road populated by so many members of the close-knit extended family that it came to be named Ingrassia Road.
Starting as sharecroppers in the 1920s, they all toiled long hours—the children, too, including my dad, his siblings, and his cousins—before saving enough by the 1930s to collectively purchase what they called a small “truck” farm (as the celery, onions, lettuce, and spinach they grew were hauled to markets in trucks). Some winters, part of the family would travel to Florida—not for vacation, but to earn money by harvesting oranges and grapefruit. As one of my dad’s cousins put it years later, “Although we grew up poor, we didn’t know we were poor.”
My parents had been introduced on a blind date by my mother’s aunt Dot, who would live to the age of 101 and who said she had never met two people more in love. My mom, a dark-haired and attractive woman with high cheekbones, worked as a secretary in a law office at the time and had been courted by many men but had always found them wanting—until my dad came along. When he did, she was immediately, and passionately, smitten with him. A handsome man with a jaunty character, he was the first in his extended family to attend college and graduated with a degree in chemistry from Syracuse University. The two married within six months of their meeting, on June 21, 1947.
It was Dad’s chemistry degree that took them to Laurel, a Deep South (and, back then, strictly segregated) city of about twenty-five thousand, surrounded by dense pine forests. He worked in research and development for Masonite Corp., a pioneer in making siding and paneling by using heat, pressure, resins, and glues to bind together wood fibers, flakes, and chips that otherwise would be thrown out as waste.
The early years in Mississippi were, in many ways, an idyllic time in their lives. Though, as olive-skinned Italian American Catholics from the North, they were considered outsiders by some in Laurel, my vivacious mom made friends easily. And my dad, an avid outdoorsman, loved the opportunities for fishing and hunting, even building a pen in the backyard where he always kept an English pointer as a bird dog. One of his dogs, named Mike, was especially good at flushing quail.
In quick succession came four children: Paul in 1950, Larry (me) in 1952, Gina in 1954, and Angela in 1956. Our parents talked about how Paul and I would fight over Gina, a cherubic infant, with each of us claiming her as “my baby.” On rare occasions, our mom’s parents or other relatives would make the long train or car trip from New York to visit us. And our maternal grandmother, Elizabeth Iacono, would especially smother us with affection.
For vacations, we would gleefully pile into the family station wagon and drive a couple of hours to a ramshackle beach house we rented in Biloxi, on the Gulf Coast. Those days were filled with shrimping, fishing, and collecting seashells. I got into trouble once when, halfway back home to Laurel, Dad smelled a rotten odor and stopped the car; I had sneaked a bunch of seashells into the trunk, not realizing that inside them were snails and slugs, which had died and were now stinking up the car. Another time, when we were fishing at a nearby lake, I became overly rambunctious and managed to run off the dock while Dad wasn’t looking. Knowing me, he’d had the foresight to put a life preserver on me, so I was under for only a few seconds, and he pulled me out when I bobbed to the surface.
At work, Dad made a name for himself after being awarded several U.S. patents for developing formaldehyde resins that improved the fiberboard that Masonite manufactured. My parents were living the American dream, using education to rise from hardscrabble immigrant work to a more comfortable middle-class life.
But my fond memories of these good times are overshadowed by the growing realization, even in childhood, that something wasn’t quite right with Mom. I recall overhearing snippets of her conversations with friends and relatives about feeling a lump in her breast but having been told by her doctor that it was nothing to worry about. Later, she would often lament, wondering why the doctor had ignored her anxiety initially, before the tumor grew bigger.
Once, after she had undergone a breast cancer operation, we were visited by one of my dad’s sisters, who was a nurse. “She asked me to view her surgery site because it was so painful. The area was just dreadful-looking, and I asked her had she seen her doctor recently,” my aunt Marion recalled. “Yes, she had, and all the doctor would say to her was that the pain was all in her head and needed no further attention. I asked your mom to please see another doctor because it just did not look right. As it turned out, the pain was caused by the second breast being cancerous as well.”
I didn’t see my mom much during the summer of 1960. We were in the process of moving from Laurel to Chicago, after my dad got a promotion. But the family didn’t go there right away because mom was convalescing from one of her major surgeries at her parents’ tiny two-bedroom house in Norwalk, Connecticut. There wasn’t enough space for all four of us kids, so our two sisters stayed there while my brother and I spent a couple of months living with our dad’s mother, Marianna Ingrassia, on the family farm. It was in some ways a blissful summer for me and Paul, a carefree extended vacation during which we scampered around the farm with our uncles and played with our many cousins. We looked forward to the occasional eighty-five-mile drive with a relative to Norwalk for weekend visits with our mother and sisters. But invariably, Mom would be exhausted and would spend much of the time resting in bed, while our grandmother Elizabeth tried to put a good face on everything and not show how worried she was.
After we settled in suburban Chicago, my mom went through hopeful cancer-free periods punctuated by battles with new tumors. Maybe it was because we were young and our parents were trying to protect us, or because cancer was a feared disease and a topic that people avoided discussing in the 1960s—but I can’t recall our talking much about mom’s recurrences. A few surviving letters between her and my grandmother give a glimpse of the haunting specter her cancer cast over everything.
“I felt real sad to hear you are going back to hospital,” my grandmother Elizabeth wrote to my mom on September 30, 1962. “I just finished talking to Gloria, she said to me she thought it was a wise thing, because the doctor know [sic] what he is doing.”
In another letter, written by my mom in what appears to be 1966 or 1967, she recounts being in pain, both from medication she was taking and from having contracted hepatitis—apparently, while getting a blood transfusion related to her cancer surgeries. “Last night I was miserable—I bet it’s those pills for the adrenal glands. I should have let him change them—in addition to the hepatitis. The cramps & pain I couldn’t take—even the cramp and pain pills didn’t ease it.… Joie [my mom’s younger sister] said a lot of hepatitis is going around. I know of no case here—mine would be from the blood transfusion in June.… I can’t understand why the doctor didn’t call; surgeons are always so busy.… I hope I can write & tell you I feel good—I’d do anything. Thank God I can walk and cook.”
During one of the periods when she felt well, in between her cancers, she took up painting, which she had enjoyed as a girl growing up, in part as a distraction from worrying about whether another tumor would be found. “I started another picture with snow and it’s coming out nice.… We’ll be starting new art classes in February, and it will give me some outside interest,” she wrote to my grandmother in January 1967. And in a letter a month later: “I’ve been drawing a little. I drew Gina in charcoal and my neighbor thinks it really looks like her. I feel real good.” Looking back, I now realize that amid the constant suffering, her greatest pain, no doubt, was the growing fear that she might never have the joy of watching her four children grow up.
She had been in and out of the hospital so often that I didn’t think anything was different when she went back for another stay in the early spring of 1968. So I was confused when a coworker of mine interrupted me on Sunday morning, March 31. I was fifteen years old, in the middle of working a four-hour brunch shift as a busboy at a nearby restaurant, Olde North Pancake House. I had just cleared a table and taken the dirty dishes to the kitchen when the chef, who knew our family, told me with a stricken look on her face that my dad was waiting for me in the parking lot out back.
When I got to the car, I saw that a friend of my parents was behind the wheel, and my dad was sitting in the backseat. He opened the door from inside and beckoned me in. We locked eyes—his were teary and red—and the next words he spoke changed my life. “Mom died,” he said. I was shocked, and we wept together as he clutched me in his embrace. She was forty-two and, by then, had endured cancer and its painful treatments for about a decade. The malignancy, I later learned, had metastasized from her breasts and ravaged her liver, lungs, and abdomen.
It was heartbreaking for all of us, but especially for Gina, then thirteen, and Angela, eleven. They were so young when Mom had her first cancer that they had scarcely any memories of her before—before cancer, when she was a radiant woman in her twenties, taking joy in raising her young family, hosting parties with new friends, sharing confidences, and looking forward to a long life.
Though I recall with intense clarity the moment I learned she was gone, I somehow have mostly gauzy images of what followed in the weeks and months after she died. I remember my friends consoling me at the funeral Mass. I remember standing with my dad and siblings at the cemetery on a raw and windy April morning while Mom’s casket was lowered and visiting the gravesite often, after Sunday Mass.
I remember Dad hiring an older woman to help out at home, and how we hated her bland cooking; it wasn’t nearly good as the spaghetti and meatballs, braciole with tomato sauce, chicken cacciatore, or veal parmigiana our mom and her mother had made for us. I remember not doing anything for my sixteenth birthday a couple of months after Mom died, because I didn’t feel like celebrating. I don’t remember being angry much, though I’m sure I was, but I do remember spending a lot of time by myself and becoming fatalistic, ruminating on how life sometimes brings bad things over which you have little control.
Even in my grief, like most teenagers, I was soon engrossed in the daily activity of life—attending my high school classes, running cross-country and track, socializing with my pals, trying to get a girlfriend, and becoming transfixed with politics in that highly political year of the assassinations of Martin Luther King Jr. and Robert F. Kennedy, of Vietnam War protests and of clashes at the Democratic National Convention in downtown Chicago. The disbelief and denial over my mom’s death faded eventually, though not the emptiness or the sadness. She was one of 318,500 Americans who died of cancer in 1968. It was tragic, but what was there to say?
There would be, alas, much more to say. Cancer was far from done with my family. We didn’t know it then, but the legacy of our mother’s illness would linger menacingly over our lives for many years to come. My mom’s fear of missing what the future held for her children was indeed well placed, it turns out. But the reason was far more complicated and painful than she or any of us could have imagined, and it would take decades of research by doctors traversing the scientific unknown before there would be any answers.
2
Christmas 1966 was a happy time for Ned and Nancy Kilius. The young couple, both from the Los Angeles area, had met and fallen in love while students at San Diego State University. They married in August 1965, shortly after Ned graduated with a degree in business; Nancy, a year younger, left school before getting her degree—not all that uncommon for women back in the 1960s. Ned was offered a job as a salesman for Colgate-Palmolive, and the two moved to Seattle and bought a small house for $18,200 in the suburb of Kirkland a year later. Nancy soon became pregnant and, on August 6, 1966, gave birth to a baby boy they named Darrel.
A few months later, to escape the dreary, rainy winter weather, they flew to Southern California to spend the holidays and show off their newborn baby. They stayed with Nancy’s family in Downey, a southern suburb of Los Angeles, and spent time with Ned’s family in Oxnard, a distant northern exurb. Ned (his given name was “Edward,” the same as his father’s, so he had always gone by the nickname “Ned”) was feeling tired and napped a lot, but with a demanding job and a new baby, that hardly seemed surprising.
At some point during their visit, relatives remarked that Ned seemed to have lost weight. Back in Seattle, he continued to feel lethargic and started having minor nosebleeds, which prompted him to see a doctor after a few weeks. He was admitted overnight while waiting for test results. That evening, at home with their baby, Nancy came across an article in Reader’s Digest about the comedian Red Skelton’s son dying of leukemia in Los Angeles in 1958. It sent her mind racing, and the next morning at the hospital her worst fear was confirmed: Ned, only a month after turning twenty-three, had been diagnosed with acute myeloid leukemia. “It was an omen,” Nancy thought of the article she had read.
Ned’s prognosis—as for all leukemia patients—was grim; at the time, the chances of surviving even five years was only about 15 percent, and many patients died within a year. Nancy’s mind flashed back to a conversation with Ned before they got married: at his father’s urging, Ned had told her there seemed to be a lot of cancers in the Kilius family. But it didn’t bother her at the time, much less affect her decision to marry him. She thought, Well, some families have heart attacks and some have cancers.
Ned’s doctor in Seattle advised him and Nancy that they would need help, lots of help, coping with Ned’s intensive chemotherapy treatment, especially with a newborn baby. Maybe they should go home to their families, he gently suggested. So they headed back to Southern California, where they could lean on their families for support during what everyone knew would be an exceedingly difficult period.
Looking for treatment options, Ned scheduled appointments with doctors at the University of California, Los Angeles. After confirming the diagnosis, the doctors there weren’t any more encouraging than the physicians in Seattle. But the UCLA doctors did offer a small glimmer of hope: they had heard of a clinical trial with experimental chemotherapy for leukemia patients being conducted by the National Cancer Institute. The doctors could help Ned get into the trial, but it would mean uprooting and moving for a while to the East Coast, far away from their families. Ned and Nancy didn’t hesitate. Though the clinical trial probably offered only a small chance of beating Ned’s cancer, that was better than no chance.
In February, they flew with baby Darrel to the East Coast. They rented a one-bedroom apartment in Baltimore’s historic Hampden neighborhood, an area lined with two-story row houses near the old U.S. Marine Hospital, which had been renamed the U.S. Public Health Service Hospital, where Ned would be treated. Because chemotherapy can deplete white blood cells, and thus increase the risk of infection, Ned basically moved into the hospital to avoid germs. He didn’t want Nancy to bring Darrel with her on visits, where he would see his father and others who were sick on the hospital ward. Ned and Nancy were active in a Lutheran parish back home, so Ned called a nearby Lutheran church and found a grandmother to babysit Darrel while Nancy sat with Ned several hours every day at the hospital to keep him company and cheer him up.
Ned’s treatment was going as well as expected. The chemotherapy, thankfully, wasn’t making him too sick, and he didn’t seem to be getting worse; despite the fear of infection, his doctors occasionally let him go home to their apartment on weekends. For all the challenges, Nancy and Ned settled into a routine that made the situation bearable.
Then, one afternoon in early June, after visiting with Ned, Nancy came home to find the babysitter in a panic. While picking Darrel up from his high chair after lunch, she had felt a small lump inside the elbow of his right arm. It was the size of a marble. Nancy wondered why she hadn’t noticed it before, as she bathed Darrel every day. It had to have appeared suddenly, she thought.
Nancy had been so focused on Ned’s health that Darrel didn’t even have a pediatrician yet. She found one who could see her baby the next day. The doctor, alarmed after examining him, advised Nancy, “I want you to see a surgeon tomorrow.” Then, he repeated it for emphasis: “Tomorrow.” So she made an appointment with a surgeon at Johns Hopkins Hospital. It was several miles south, so inconvenient, but she thought Darrel might get the most attentive care there.
The surgeon did a biopsy of the lump, and tests confirmed that Darrel had a cancerous tumor—a rhabdomyosarcoma, a very rare soft-tissue malignancy that afflicts only about five hundred people a year in the United States. Darrel was barely ten months old. It was unusual for a baby to get cancer of any kind, but especially a rhabdomyosarcoma.
Not sure how to proceed, the surgeon called other physicians he knew at other children’s hospitals. Radical surgery was the main weapon for fighting tumors like Darrel’s. The typical treatment, the doctor advised, would be amputation of Darrel’s arm all the way up to the shoulder, to keep the cancer from spreading. Nancy caught her breath. To her relief, the doctor quickly added that, given the small size of Darrel’s tumor, the consensus was to try an alternative—a resection, or removal, of the biceps, taking the tumor out at the elbow but also the muscle tissue above it, where the malignancy might metastasize. It would be a major operation, but Darrel would still have his arm.
Irma Kilius, Ned’s mother and Darrel’s grandmother, flew to Baltimore from the West Coast to be with Nancy, and the surgery was performed on June 6. A few days later, it was time to take the bandages off. The surgeon, worried about Nancy’s initial reaction to seeing Darell’s disfigured arm, wanted her to wait outside his room, but she insisted on being there. When the doctor unwrapped the bandages, Darrel immediately moved his arm, as if the surgery hadn’t removed a large portion of his upper arm muscles. To Nancy, it was a blessing. Maybe, just maybe, a year that had been unrelentingly horrible until now was going to get better.
Indeed, a couple of months later, Darrel’s follow-up radiation and chemotherapy were completed with no sign of the tumor having spread, and Ned’s doctors felt his leukemia was sufficiently in remission that they released him in early August. Though Ned wasn’t feeling great, the young couple and Darrel flew home to Kirkland, happy to leave behind the constant gloom of cancer wards, chemo infusions, and appointments with doctors. They went back to “playing house,” as Nancy called it, hoping—really, praying—that life had returned to normal.
But Ned’s remission didn’t last long. After a week or so, he started having a hard time breathing. Late one night, Nancy was so scared that she called a local doctor, who advised her to get a paper bag and have Ned breathe into it. Still worried, she called the pastor at their church, who came over and drove them straight to a hospital emergency room. Ned might have died otherwise. His leukemia had caused severe respiratory acidosis, with high levels of carbon dioxide in his bloodstream causing him to hyperventilate as he gasped for oxygen. The young couple spent their second wedding anniversary in the hospital, then flew back to Baltimore so Ned could be with the doctors who had been treating him.
Ned clearly was in a fight for his life. Though father and son had both had cancer at the same time, none of the doctors treating either of them suggested any connection. Leukemia and rhabdomyosarcoma are entirely different malignancies. No veteran cancer researcher would have suggested the two were related. Yes, it was a wildly unlikely occurrence—but it was a coincidence. In a country with tens of millions of families, tragic, statistically unlikely things can happen.
Copyright © 2024 by Lawrence Ingrassia
