How 2 Children With Leukemia Helped Transform Its Treatment
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.
A few years ago, cancer survivor James Eversull was told that he needed to lose weight and exercise. He took his doctor's orders seriously and today is an avid marathon runner.
"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.
Pat Patchell was diagnosed with cancer when he was 11. At age 62, he is one the country's oldest survivors of childhood leukemia.
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."
Find other stories in the Living Cancer series at WNYC.org.
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 with Ken 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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Transcript
DAVID GREENE, HOST:
Now the story of some remarkable survivors. It's part of our series Living Cancer produced with member station WNYC. Cancer treatment has changed dramatically since the 1960s. Back then, doctors were using promising experimental treatments, but they were often highly toxic. Those experiments made cancer treatment safer and more effective for patients today. WNYC's Amanda Aronczyk met up with two patients from yesterday who've lived on.
UNIDENTIFIED ANNOUNCER: All right. If you'll take your seats.
AMANDA ARONCZYK, BYLINE: Every year at St. Jude's Children's Research Hospital, there's an event for their cancer survivors.
UNIDENTIFIED ANNOUNCER: Let's have those diagnosed from the year 1990 to 2000 - 1980 to 1990.
ARONCZYK: As the MC counts back the decades, fewer and fewer people head to the front of the auditorium.
UNIDENTIFIED ANNOUNCER: OK. And our final group - those diagnosed in the decade of the '60s.
ARONCZYK: Just six people walk up and collect a pin that says survivor.
UNIDENTIFIED ANNOUNCER: Let's give a hand to those that were...
(APPLAUSE)
ARONCZYK: In the middle is James Eversull. This event marked his 50th year as a cancer survivor. He was diagnosed with leukemia in 1964.
JAMES EVERSULL: My nickname was Jimmy, OK? And they would say, Jimmy with cancer, Jimmy with cancer because you say cancer back in the 1960s, and they think you're, you know - if you touch them, you're going to catch it.
ARONCZYK: People had little understanding of cancer back then. And there was no cure. Today, doctors can treat most cases of childhood leukemia. Success rates are high. But when this hospital opened in 1962, it was given its name for a reason. St. Jude is the patron saint of lost causes. The first medical director was Dr. Donald Pinkel. He started his medical career the 1950s.
DONALD PINKEL: It was so sad. I would go when I was a resident, and I'd just sit down and listen to the parents and let them on unload on me, reassuring them that this was not some form of punishment.
(SOUNDBITE OF FILM)
UNIDENTIFIED NARRATOR: Leukemia is a blood disease - a silent killer.
ARONCZYK: As they explained in this film from the St. Jude archives, chemotherapy was promising, but it couldn't make remission stick. A few months later, cancer would come back.
(SOUNDBITE OF FILM)
UNIDENTIFIED NARRATOR: No drug has yet been found that will stop or cure leukemia. When the treatment reaches the end of the line, the child dies.
PINKEL: Oftentimes when a youngster died, I would go into a room and close and lock the door and cry my eyes out for a while to get it off. But when you were working with families, you had to maintain your composure.
ARONCZYK: On the day that James Eversull's family took him to St. Jude, they drove 400 miles from their home in Louisiana to Memphis. They had heard that the hospital was experimenting with new treatments. Eversull's mother, Brenda, was just 19 years old. She remembers that only one parent was allowed to sleep in her son's hospital room, so her husband, Jack, slept in the Chevy that night.
BRENDA EVERSULL: The next day, here come the doctors. And Jimmy's in the middle of this bed. It must've been 10 or 12 doctors came around the bed. And so they went over the case, talked about this and talked about that. And so all during that day though, I kept seeing kids die.
ARONCZYK: In the actual first day that you're there?
B. EVERSULL: Yeah.
ARONCZYK: She was scared. But she didn't think her son looked as sick as the other children she saw in the hallways.
B. EVERSULL: Tubes coming out here and there and - it was horrible. I just wanted to go home. I wanted to take my son and go home.
ARONCZYK: What convinced you to stay?
B. EVERSULL: I guess what Dr. Mack said and then Jack said, too. He said, where you going? It's going to be back wherever we go.
ARONCZYK: Over the next two years, James Eversull endured intense, high doses of drugs, radiation to the brain and then regular chemo. This protocol was called total therapy study three.
B. EVERSULL: Did I think it would work? No. All I could do was hope and pray. That's it because we had proof that it would.
PINKEL: It was very difficult. You had to be very careful in these early phases.
ARONCZYK: Here's Dr. Pinkel again.
PINKEL: You could shove them over the brink with your therapy.
ARONCZYK: This was an era before there were rules about testing on humans. Pinkel had an advisory board for difficult ethical questions. It wasn't as though there was no oversight. But the attitude was they're going to die anyway. We need to experiment. Again, patient James Eversull.
J. EVERSULL: You say experimental, you know, and I'm thinking, oh, my God, like, "Young Frankenstein" or "Dr. Jekyll And Mr. Hyde" or something. You know, you're giving me something that you don't even know what it's going to do, you know?
ARONCZYK: While the doctors and parents remember the stress of caring for these children, the kids were still kids. Ask them today what they remember and they'll tell you - it was playing hockey with the nuns or watching "Dr. Kildare" on TV.
Do you mind introducing yourself?
PAT PATCHELL: OK. I'm Pat Patchell. I live in Memphis. And what else do you need to know? (Laughter).
ARONCZYK: Patchell is the oldest of the people who survived this experiment. He marks the start date of his treatment differently than the doctors.
PATCHELL: Well, I guess it was '64. You can remember that because the Beatles were coming to the United States.
(SOUNDBITE OF TV SHOW, "THE ED SULLIVAN SHOW")
RALPH PAUL: Live from New York, "The Ed Sullivan Show."
PATCHELL: And I watched the Beatles on "The Ed Sullivan Show" from my hospital bed. That was a big deal.
(SOUNDBITE OF TV SHOW, "THE ED SULLIVAN SHOW")
ED SULLIVAN: The Beatles.
(SCREAMING)
ARONCZYK: When Patchell finished chemo, he was pleased that his curly hair grew back straight because he looked more like the Beatles. He says that unlike the adults, he was pretty happy at the hospital.
PATCHELL: They gave me a 11-and-half-year-old birthday party. I think it was years later I read somewhere that people would have premature birthday parties because they didn't know if they were going to be around for the next one.
ARONCZYK: You must've been so excited to have an 11-and-a-half birthday party.
PATCHELL: (Laughter) Yeah, I - yeah, they gave me half a cake (laughter).
ARONCZYK: Not long after Pat Patchell's half-birthday party, he started to get better. Now the next step was figuring out when to take him off the drugs.
PATCHELL: I do remember one doctor said, you stay with a winning horse, you don't get off.
ARONCZYK: But the side effects were brutal. So after two and a half years of chemo, they agreed to stop.
PATCHELL: It was very much unknown territory. I mean, that's the reason they kept an eye on me for so long. I was into my 30s, I think, before I stopped coming back every year.
ARONCZYK: Both Pat Patchell and James Eversull still return to St. Jude for periodic checkups. Like survivors of the Titanic, they're remarkable not for what they did, but for what they endured. Of the 26 kids who started this treatment, only five made it to adulthood. But thanks in part to these experiments, about a decade later, doctors could start to say there's a cure for this kind of leukemia.
PINKEL: That was the breakthrough. 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.
ARONCZYK: Today, James Eversull is 53 years old and Pat Patchell is turning 62 and a half. For NPR News, I'm Amanda Aronczyk.
GREENE: That story - part of our series Living Cancer. It's produced with WNYC. And also with "Ken Burns Presents Cancer: The Emperor Of All Maladies." That will air on PBS stations starting next week.
(SOUNDBITE OF MUSIC)
GREENE: It's NPR News. Transcript provided by NPR, Copyright NPR.
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