When children are diagnosed with acute lymphoblastic leukemia now, they have more than a 90 percent chance of survival.
But when James Eversull was told he had leukemia in 1964, there wasn't much hope.
He was just 18 months old when his parents discovered what was wrong.
He says he remembers as an older toddler overhearing his family and doctors discussing his illness. "My nickname was 'Jimmy,' and they would say 'Jimmy with cancer, Jimmy with cancer,' " he said. "Because you say cancer back in the 1960s, and they think if you touch them you're going to catch it."
Eversull's parents were determined to help him. The family drove almost 400 miles from their home in Louisiana to St. Jude Children's Research Hospital in Memphis, Tenn.
St. Jude was named after the patron saint of lost causes for a reason.
"These children were often turned away," said Dr. Donald Pinkel about his years as a young doctor in the 1950s. He went on to become the first medical director at St. Jude. "A lot of physicians just didn't want to handle this situation — it was so sad."
Eversull's mother, Brenda, who was 19 years old at the time, said the hospital was not an encouraging sight. "All during that day, I kept seeing kids die," she said.
She was scared, but she didn't think Jimmy looked as sick as the other children she saw in the hallways. "Tubes coming out here and there ... it was horrible. I just wanted to take my son and go home."
But the physicians at St. Jude were trying something new: a chemotherapy drug cocktail paired with radiation. They called it "Total Therapy III." It's a variation of what most acute lymphoblastic leukemia patients still get today. But patients like Eversull, acting as guinea pigs, were among the first ones to try it.
"You say experimental, you know, and I'm thinking, oh my God, like Young Frankenstein or Dr. Jekyll and Mr. Hyde," Eversull said. "You're giving me something and you don't even know what it's going to do?"
This was an era before experiments on humans were closely regulated. Pinkel had an advisory board for difficult ethical questions. It wasn't as though the doctors had no oversight.
But Pinkel and his colleagues thought experimenting with toxic treatments was worth the risk of making the kids sicker. They didn't know if the kids would survive otherwise.
"It was very difficult," Pinkel said. "You have to be very careful in these early phases because you could shove them over the brink with your therapy."
Chemotherapy was showing promise for some young patients, but the challenge was maintaining remission.
What distinguished Total Therapy III from earlier protocols was the use of radiation to the brain to avoid relapses. The treatment would result in a lasting remission for many of the children, but the doctors feared cognitive problems later in life. The challenge became deciding when to take the children off the treatment.
"I do remember one doctor said, 'You stay with the winning horse,' " said Pat Patchell, 62, one of St. Jude's oldest leukemia survivors.
"I think it was a pretty big decision on their part," Patchell said. "It was very much unknown territory. That's why they kept an eye on me for so long. I was into my 30s before I stopped coming back every year."
Both Patchell and Eversull still return to St. Jude for periodic checkups. Of the 26 children who started Total Therapy III treatments in the early 1960s, only five made it to adulthood. Three are alive today.
Still, the research was a crucial step in developing a treatment for acute lymphoblastic leukemia. "Total III was the breakthrough," said Pinkel. "That's where we got cures and that's where we have patients today who are up there in age now and are alive and well."
When these men were patients the chance of surviving was less than 5 percent, but a decade later, thanks in part to this work, oncologists could start to say there was a cure for acute lymphoblastic leukemia.
Our series is produced with member station WNYC, and withKen Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30.Check your local listings for broadcast times.
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