When Eric Wendel was diagnosed with acute lymphoblastic leukemia in 1966, the survival rate was 10 percent. Today, it is 90 percent. Even as politicians call for a "Cancer Moonshot," this accomplishment remains a pinnacle in cancer research.
The author’s daughter, then a medical student at Georgetown Medical School, told her father about this amazing success story. Tim Wendel soon discovered that many of the doctors at the forefront of this effort cared for his brother at Roswell Park in Buffalo, New York. Wendel went in search of this extraordinary group, interviewing Lucius Sinks, James Holland, Donald Pinkel, and others in the field. If there were a Mount Rushmore for cancer research, they would be on it.
Despite being ostracized by their medical peers, these doctors developed modern-day chemotherapy practices and invented the blood centrifuge machine, helping thousands of children live longer lives. Part family memoir and part medical narrative, Cancer Crossings explores how the Wendel family found the courage to move ahead with their lives. They learned to sail on Lake Ontario, cruising across miles of open water together, even as the campaign against cancer changed their lives forever.
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Sometime after eight in the evening, with bedtime often come and gone, Dad would stand at the bottom of the stairs and sing out, "I'll beat cha." You would have thought it was a secret command from a pirate movie airing on late-night TV or a cowboy cry from Roy Rogers or Rawhide. No matter, for the younger kids would come running, eager to beat Dad in another race upstairs to bed.
There were maybe a dozen steps to the old farmhouse's open staircase, and night after night my father would take a short lead only to slow down, almost in slow motion, as he approached the top. Sometimes Dad hung on to win, other times he faltered enough in the stretch for everyone to edge him at the wire. Whoever won would shout out, "I beat cha." Soon enough, the thrill of victory blurred into one word — "Ibeecha!"
That became the name of our first bona fide boat, the one that we sailed together on the inland sea named Lake Ontario. No matter that other boat owners in Olcott, New York, dubbed our vessel "The Anthill," due to all the kids swarming on board. We were Ibeecha, filled with confidence and expectations as we learned to keep an eye on the far horizon.
We had so many boats over the years: the Penguin dinghy we tried to sail on the Erie Canal; the 24-foot Shark that first bore us across 40 miles of open water to Toronto; the Cal 27, with its popup cabin top, which excelled in light air and sailing downwind, making Dad competitive in the local and Lake Yacht Racing Association races. There were the Cal 3-30 that sported lots of space below deck, including an oven, and the C&C 29, which was better suited for racing than family cruising, much to my mother's regret. Every man has a sweet tooth, and a sailboat, specifically a gleaming fiberglass job, was my father's. Looking back on it all, my brother Eric shared this affinity for boats more than the rest of us. He and Dad loved to watch crafts of all sizes out on the water, under full sail, looking so much like giant birds in flight.
In November 1962, only three days before Thanksgiving, my mother gave birth to another boy — Eric Gordon Wendel.
Often parents name their children after family members or dear friends. But Eric was named, in a fashion, after Finnish architect Eero Saarinen.
"When Mom and I were young, we were fascinated with architecture and the architects of the time," Dad said. "My favorite, and I think Mom's too, was Eero Saarinen. It all began when I learned he and his dad, Eliel, had designed Kleinhans Music Hall in Buffalo. I liked the clean, simple lines of the building that gave it a stately look, and its wood paneling and brick gave it warmth at the same time."
Saarinen also designed the St. Louis Arch, the TWA terminal at JFK Airport, and the Dulles Airport terminal during his short career. With its glass walls, grand open floor, and sweeping, wing-like roof, the Dulles terminal stands only 10 miles from my home in northern Virginia, and Saarinen called it "the best thing I've ever done."
Dad said that Saarinen's approach was "to let each building 'tell him what it should be.' He was beyond imposing his ego, his brand, on the building."
In 1961, Saarinen died at the age of fifty-one in Ann Arbor, where he was overseeing a new music building for the University of Michigan. Saarinen died while undergoing an operation for a brain tumor. Eleven years later, his wife, Aline, who was an art critic and television journalist, died of the same condition.
Eero Saarinen's death "hit me pretty hard," Dad said, and he wanted to remember his architectural hero in some way. So when Eric was born, he and Mom briefly considered Eero and Eliel but soon decided those would be difficult names for any kid to deal with. Then they discovered that Eero had a son named Eric. That's what they decided to name my brother.
At first, Eric Gordon Wendel appeared to be like the rest of us. He enjoyed being outside, in motion, always up to something. He laughed as hard as the rest of us at Quick Draw McGraw and Huckleberry Hound cartoons. Yet his hair was lighter, more reddish in color — a stark contrast to the raven-black mops my brother Chris and I sported. His features were more delicate, too. His hazel eyes took in everything, and his lips would draw into a thin smile when something amused him.
In short order, another boy (Bryan) and about five years later a girl (Amy) were born, completing our family of six kids — four boys and two girls. Six kids, if taught the correct procedures, were more than enough to operate a fair-sized sailboat.
On the medical side, our family history couldn't have been better. Both parents were alive and healthy, the grandparents, too, and there was no history of allergic tendencies, diabetes, or certainly cancer in our family. So my parents were baffled when Eric could barely get out of bed late in the winter of 1966. He was three years old.
Eric had bruised his right shin during a play date in the Buffalo suburbs. The blow had deepened and yellowed, lingering on for weeks. Mom took Eric to our family pediatrician, George Muscato, on East Avenue in Lockport, New York. At first, Muscato told my mother that the boy was in fine health, that she was overreacting to some bumps and bruises. But after Mom brought in Eric several more times, the doctor ordered blood work to be done.
Mom had already left Muscato's office when those initial results came in. They indicated a shortage of red blood cells and an alarming platelet count — the tell-tale signs of leukemia.
Muscato called my father at his office and told him to go home right away and wait for the family station wagon to pull in. Minutes later, when Mom arrived, my parents took Eric straight to Lockport Memorial Hospital. Muscato was waiting for them when they arrived, pacing back and forth in the hallway near the admissions desk.
"I'm sorry," he repeatedly told my mother. "I failed you. I should have listened better."
Another round of blood work confirmed that Eric had acute lymphoblastic leukemia, or ALL. That was a death sentence in the mid-1960s. Under the heading "leukemia" in the Handbook of Pediatrics at the time, the diagnosis simply read, "There is no cure for leukemia; treatment is directed at prolonging life and relieving symptoms." The initial prognosis was that Eric would be lucky to live eighteen months.
My brother spent one night at the local hospital, and the medical personnel there didn't know what to do with him. Mom remembered that some of the nurses whispered that he might be contagious. They ordered him to sleep in a crib, with the sides pulled up, tall and tight. They warned him not to climb out — as if they were afraid of him.
The rest of us learned that something was seriously wrong when we came home from school to find our Grandma Bunny making dinner in my mother's kitchen. We knew she didn't think much of that narrow railroad-style kitchen underneath the stairs leading to the second floor. She liked a full room, with plenty of counter space and with the pots and pans and utensils within easy reach.
"Your brother's very sick and your mother's with him at the hospital," she told us after we came off the bus. "I'm making you dinner tonight."
Our house was eerily quiet that evening. Nobody turned on the television after dinner, and there were no Ibeecha races upstairs at bedtime. For the longest time, my younger brother Chris and I tried to drift off to sleep in the bedroom we shared at the time.
"Do you think Eric's going to be OK?" Chris asked.
"I don't know," I replied, trying to sound unafraid. "I don't know."
Early the next morning, April 7, 1966, my parents drove Eric the half hour or so to the Roswell Park Memorial Institute, a few blocks off Main Street in downtown Buffalo.
"We told Eric that we were going to a bigger hospital — one where they could see why he wasn't feeling well," Mom remembered. "We didn't use the word 'cancer.' We never did."
At Roswell Park, Dad signed the papers that detailed how experimental the pending procedures could be. Also, any care at Roswell Park would be free of charge.
"We didn't pay anything," Dad told me years later, "except for gas money."
"No, we paid," Mom added. "We paid with a life."
At Roswell Park, my parents met many of the pediatric doctors. "That morning I was told, 'You're a part of the team,'" Mom said. "That was news to me. I had never been on a team in my life."
Why take a long look back, especially to a time when everything in my family seemed to be taken to such extremes? When we seemed to be living well outside ourselves, so far beyond what passed for a normal life? For me, it began with a simple question or two. An interest that opened the door to a past I had largely forgotten or never fully knew.
My daughter, Sarah, was in her first year of medical school, and every other week seemed to bring another examination about another disease that could kill you, a macabre parade of seemingly every malady ever known to man.
"Dad, you had a brother who died, right?" she asked during that period.
Yes, of leukemia, I told her. He died when I was seventeen years old.
"And he was how old?"
He was ten years old. Eric died in 1973.
Thanks to her studies, Sarah knew that kids suffering from leukemia today have a much higher chance of surviving, even enjoying full lives.
"And the doctors, the treatment he received?"
Between the lines, I knew that Sarah was asking if Eric would have been better off at a big-city hospital in New York or Boston. I told her that my brother had actually been very lucky. He was cared for at Roswell Park in Buffalo, New York, which has long been recognized as one of the best cancer facilities in the country.
"That means your brother was right there, when they were trying to find a cure."
Yes, I suppose he was.
"Don't you see, Dad, they eventually did it. When it comes to leukemia, most kids are now living to be adults."
Eric survived nearly eight years after the original diagnosis — far longer than anybody expected. He was a brave kid, a great brother. But then I had to stop, for I didn't know any specifics in terms of any care and procedures — what my daughter really wanted to discuss. Back then, I wanted to believe that the world was a more equitable, a more just place than what played out in what I remember now as the leukemia years. Back then, I was so much in the middle of it all — too afraid to ask too many questions.
After Sarah left that evening, I found an article online in the New England Journal of Medicine entitled "Comparison of Intermediate-Dose Methotrexate with Cranial Irradiation for Post-Induction Treatment of Acute Lymphocytic Leukemia in Children." One of its authors was Lucius Sinks, whom my mother reminded me was the director of Pediatrics when Eric was at Roswell Park. Soon I came across another article, this one from St. Jude Children's Research Hospital in Memphis, for which Donald Pinkel was one of the authors. Pinkel had founded the department of pediatrics at Roswell Park in 1956 and was a member of the first multi-institutional group for the study of cancer, the Acute Leukemia Group B.
Sarah had been right. When my brother was diagnosed in the mid-1960s, less than 15 percent of children with the disease survived. Today, that statistic has risen to nearly 90 percent. A wealth of research papers, clinical trials, and scientific journals detailed this amazing turnabout, and many were written by the same doctors — Sinks, Frei, Pinkel, and Holland.
Thanks to forty years of writing for newspapers and magazines and then doing my own books, I've learned how to talk to people and, more important, to listen to what they have to say. If anything, I'm willing to become captivated by "the mad ones," as Jack Kerouac once wrote, "the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time...."
In the story of childhood leukemia, a small group of doctors in such locales as Memphis, Boston, Houston, Washington, and Buffalo was known as the mad ones, the ones who dared to take on this shape-shifter of a disease and somehow carry the day. In working my way through the reports and articles, I realized that my brother may have lived only a short while, but he had fallen in with a resilient and determined group of doctors and nurses. As a sportswriter, I've written about many memorable teams: the 1980 Olympic hockey squad at Lake Placid, the 1968 Detroit Tigers, and the St. Louis Cardinals. The list goes on and on.
"You're doing it again," a good friend said. "Investigating a group of underdogs and how they came together. How they overcame great odds."
So where were the leukemia doctors now? How many of these medical pioneers were still working or even alive? What did they think of their efforts years after such procedures and studies had turned the medical world upside down? And what were the points and places where the struggle against childhood leukemia and my family's own story came together?
My daughter's simple question led to so many more. Her interest had taken something from far back in my past and brought it right to the forefront. Over the years, specific remembrances of my brother — the way he smiled, the orderly way he dressed — had faded away. As time had passed, I went weeks, even months, without thinking of my brother. He stayed far in the background until a moment, a simple question, brought him back to the present moment again.
Usually when that happened I would briefly reflect on the good times, perhaps when we were all together on the boat, far from shore on Lake Ontario. And then I would let it go. This time, however, I began to think long and hard about those years. How we used to sail across miles of open water in the summer months or skate on the back pond past the railroad tracks when it froze in the winter. How playing softball on a makeshift diamond near the fruit orchards that stretched along Route 18 near Olcott or listening to distant radio stations from Toronto, Detroit, and Chicago reassured me somehow. With those times in mind, I began the search for my brother's doctors.
As with anything, some of it falls into line and the rest becomes much more elusive. Within weeks of Sarah's visit, I returned home to western New York to talk with Dr. Jerry Yates, who had been at the forefront of the early intensive treatments of acute leukemia. We met at the Towne restaurant in downtown Buffalo, only a few blocks from the old Courier-Express building, where I had begun my newspaper career.
"Some determined people were involved in this effort," Yates told me. "Unfortunately, we're all getting on in years."
Yates told me about his boss and longtime friend, Dr. James Holland, who at the age of ninety still worked several days a week at Mount Sinai Hospital in New York. Telephone conversations proved to be the best way to speak with Holland.
"After 4:15 in the afternoon until 4:45," Holland said, "That's when I can be found. Call when you can."
Early on I asked Holland why he was still working several days a week, still making the rounds at an elite hospital. A pause followed my attempt at chit-chat.
"You have to remember something," Holland finally replied. "Time is always of the essence in any of this. Why am I still going to work in the hospital? Because if I can get a few more years, I sincerely believe I can help find a cure for other cancers. It's always a race, you see."
Beginning in the 1960s and into the 1970s, Holland and Yates spearheaded many crucial advances in leukemia research. That said, they usually worked with adult patients. I needed to find those who were on the fifth floor at Roswell Park, where kids like my brother were treated.
Barbara Hall, one of the first nurses I spoke with, told me about Dr. Donald Pinkel. How he had been Roswell Park's first director of pediatrics before health issues forced him to leave his native western New York and move to western Tennessee, where he founded St. Jude Children's Research Hospital in Memphis. Pinkel now lived in central California, and we began to chat on the phone as well as correspond by email and regular mail.
Excerpted from "Cancer Crossings"
Copyright © 2018 Tim Wendel.
Excerpted by permission of Cornell University Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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What People are Saying About This
"It’s amazing when an author can plumb the pain of his personal past and find in it a story of historical significance. [Wendel] found that the doctors who treated his brother were the very men who, at the very time, were pioneering the treatment of leukemia that virtually robbed the disease of its terrible, killing power."
"Buttressed by his years as a journalist, Wendel weaves the skill of an investigative reporter with the artfulness and honesty of a memoirist."
"For as long as I have followed his work, Tim Wendel has always chosen a distinct path of intimate stories within big topics, those subjects revealed by his superb way of getting at the particular.This riveting book is no different.Bravo!"