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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 surpassed 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 decades 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.”
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.
Still, Pinkel wasn’t at Roswell Park when Eric was first enrolled in the rigorous anticancer program there. He had already moved on to Memphis and had begun the uphill fight to build St. Jude. The director of pediatrics during this period in Buffalo was Dr. Lucius Sinks. And when I first started to ask around, nobody knew where he now lived. It took me several months to find out that Sinks lived in Charlottesville, Virginia, only a two-hour drive from my home in suburban Washington.
Arguably, the person I needed to talk with the most was almost in my backyard. I began driving to Charlottesville to meet with Sinks every other month or so. Some friends teased me that Mitch Albom had “Tuesdays with Morrie,” while I had “Lunches with Lucius.” Sinks and I always got together at the Boar’s Head Inn, 4 miles from downtown Charlottesville.
Early on, he didn’t know what to make of me or this search for a brother’s legacy. I may have met him on one of our family visits to Roswell Park decades before, but neither of us was ever certain. In fact, I wasn’t sure of much in those initial conversations at the Boar’s Head. The medical terminology, and trying to establish a time line for all that Eric had gone through, was often overwhelming.
Yet Sinks was patient with me, and slowly we began to tease things out. Everyone I spoke with during this search was generous and understanding. Perhaps they realized, as Holland had said, that time was of the essence. That nearly all the medical professionals involved in the campaign to turn the tide against childhood leukemia were in their eighties and nineties now. Certainly a myriad of medical reports, clinical trials, and newspaper stories about this amazing struggle were now part of the public record and will remain forever so.
But if I wanted to talk directly with the mad ones who took on and eventually beat Acute Lymphoblastic Leukemia, I needed to hurry.
