They weren't expected to live. St. Jude gave them hope - and a future.
photographs by Brandon Dill
Patients who came to St. Jude Children’s Research Hospital in its early years were up against staggering odds. Depending on the type of cancer that struck a child, the chances of survival were slim to none. For instance, of those patients who had acute lymphoblastic leukemia (ALL) — the most common form of childhood cancer — only 4 percent would beat it. Children with Hodgkin lymphoma — which starts with lymph nodes in the neck and invades various organs — pretty much faced a death sentence. Remission, if achieved, was brief.
Today, the odds have almost been reversed. Children treated at St. Jude for ALL enjoy a survival rate of 94 percent. Survival rates of all forms of childhood cancer approach 80 percent.
In some ways today’s patients owe their lives not only to St. Jude’s tireless physicians and researchers, but to the children who went before them. On these pages, three former patients — two diagnosed with ALL, one with Hodgkin lymphoma — tell their stories. As one declares, “I’m living testimony to what St. Jude can do.”
When this 63-year-old grandfather spins a yarn, his eyes dance and the boy inside shines through. He tells of how his father once told him he could sing “Are You Washed in the Blood?” at their Baptist church. But after waiting weeks for his big moment, something happened when Dwight Tosh finally stood before his audience. Instead of a reverent rendition of that old salvation hymn, the 7-year-old slapped his thigh and burst forth with “I’m Too Old to Cut the Mustard.” He felt a big hand pull him off the stage, and he says probably what kept his father from killing him was the appreciative applause from his listeners. “They clapped,” he chuckles, “something Baptists never do.”
Tosh is a born storyteller, but when the subject is St. Jude, the laughter stops. For years he has spoken to groups from Maine to California, raising money for the hospital. He tells his audience, “I spent 37 years with the Arkansas State Police and have probably encountered every situation you can imagine. I can tell you about staring down the barrel of a gun and how my life could have ended on a dark, lonely highway, and other dangers I’ve faced. And I’ll never shed a tear about those. But when I tell you about looking down the hallways of St. Jude, I can’t make you that same promise. It’s such an emotional thing.”
His illness started in 1962, with a fever running as high as 105 and with “every doctor in Jonesboro, Arkansas, trying to decide what was wrong.” German measles? Scarlet fever? Finally, when a knot appeared on his neck, a biopsy revealed the truth: Hodgkin lymphoma. With fever still raging, the 13-year-old — who was a starter on his junior high basketball team — was too weak to walk or eat. “I was barely existing,” he says. “I found out later the doctors summoned my family and said, ‘Prepare for the worst.’”
But somehow word got to his parents about a new hospital in Memphis that had opened just two months earlier. “I was admitted on April 22, 1962 — the 17th patient,” he says with pride and a bit of awe. “I’m the oldest surviving patient and the only one left with a double-digit number.”
Looking back at those first weeks, Tosh recalls more about his family’s sacrifice than he does his suffering. Though his mother was surely worn out and worried sick, she never showed it and rarely left his side. “She was a strong woman,” he says with tears in his eyes, “and she never let me see her fear. If she had, I might have given up. And while I was being taken care of, my two brothers and sister were left on their own. They needed their parents too.” His father, to help pay the mounting bills from the Jonesboro hospital, worked two shifts at a local factory, and his friends there raised money to help out the family. But at St. Jude, a light shone through the financial gloom. Since every patient was treated regardless of ability to pay, “that burden was lifted,” says Tosh.
Among his experiences as an inpatient, a few memories stand out — sitting in the TV room and watching an old war movie called Pork Chop Hill (“I loved it and have seen it many times since,” he declares); meeting The Three Stooges, who bounced around making the kids laugh; and getting to know a boy named Earl. They became friends and so did their mothers. Then one day he passed Earl’s room and it was empty, all his possessions gone. “He didn’t make it,” says Tosh. “That bothered me.”
When he recalls a visit from another entertainer, he smiles and says, “I got pretty excited about The Three Stooges, but when word got out about Danny Thomas coming, the kids were like, ‘Who’s that?’ But my mother? She was thrilled. And he was just the kindest man, sitting beside me and talking to my mom. He gave me the feeling that if I were the only sick child in the world, he’d still have built this hospital. That’s how special he made me feel. Looking back in perspective, I see what a privilege it was to be in his presence.”
Tosh’s disease went into remission and he returned to home and school — “That’s another story in itself, hard as it was,” he says — and lived a typical teenage life. He speaks of a girl named Joan, who rode to church with his family. “I’d think, ‘Why in the world do we have to pick this kid up . . .” But at some point his scorn took an amorous turn. “I asked her out and we dated all through high school.”
When he started college at Arkansas State University, Joan called a halt. “I wasn’t behaving like I should and I guess I messed up,” says a sheepish Tosh. He must have messed up bad, since Joan didn’t speak to him for three years. Then one day he asked her brother how she was doing. Encouraged by the comment “I think she still cares about you,” Tosh gave her a call. She finally agreed to see him. “Three months later we got married, May 30, 1970.”
Tosh took a job as a radio operator with the Arkansas State Police, and a few years later became a state trooper. “They did a thorough check on me, and that included medical,” he says. The person they spoke with at St Jude told them, “We can’t promise his illness won’t come back. But the odds of him getting it are the same as you. He’s back to a level playing field.” He retired at the rank of captain a few years ago, owns a private investigation business, and is running for sheriff of Craighead County in the 2012 election. Joan, who spent 31 years as an educator, helps him in the business.
As Joan brings out framed family photographs to show visitors, Tosh points to his daughter Christy Crider, an attorney in Nashville, and Brant Tosh, a lieutenant with the state police, and four grandchildren. Looking at their smiling faces, his eyes mist over and he says, “Without St. Jude, all these picture frames would be blank.” He recalls speaking to a group three years ago and “what struck me was that it fell on April 28th and I was admitted on April 22nd. And I asked those people to go back with me in time and imagine this: If someone had walked in and sat on my bed and said, ‘Dwight, 47 years from now you’ll return here and will stand and tell your story, how you fought the greatest battle of your life.’ I did, and today I’m living testimony to what St. Jude can do. That’s my dream for every child, that they be living testimony.”
You might have seen him at the Once Upon a Farm section of the Memphis Zoo, playing his guitar and singing old American songs with a group called Going Back. Or you might have sat near him in the audience during a performance of the Germantown Symphony, in which his wife, Marti, plays the flute. In either case, you would have known he loves music and clearly adores his wife — but you wouldn’t know he was something of a pioneer in the battle against childhood leukemia.
In the fall of 1966, after two and a half years of treatment that included chemo and radiation, Pat Patchell was one of five patients — all of whom were in long-term remission from acute lymphoblastic leukemia (ALL) — to be taken off treatment by St. Jude clinicians. Dr. Donald Pinkel, the institution’s first director, had been concerned that such treatment sustained over long periods would harm children, yet ending it could mean that the cancer would come back. But after discussions with fellow physicians and with the parents of the five children, the decision was made: Treatment would end.
“When they approached us about it, it was as if they were thinking out loud,” recalls Patchell. “The doctors said, ‘You know, we’ve never tried this before.’ But my blood work had been good and I was feeling normal. And it had been tough going through all that. We were definitely in agreement for stopping treatment.” That was 45 years ago, and regular follow-up testing since then has shown no relapse. (Two of the other four patients taken off therapy are still living.)
The 59-year-old accountant clearly recalls when he began to feel sick, on a beautiful December Saturday in 1963. He’d been playing baseball and football and riding bikes with his buddies in Harrisburg, Arkansas. “I probably rode farther that day than I’ve ridden in my life,” says Patchell. “I finally had to say, ‘Guys, I’m tired, I gotta go home.’” Over the next few months of suffering persistent flu-like symptoms, the 11-year-old made several trips to pediatricians in his native Harrisburg and nearby Jonesboro. From there, in the late winter of 1964, a doctor sent him to St. Jude.
“We got the diagnosis immediately,” says Patchell. “My parents told me what it was, but they kinda sugarcoated it, saying, ‘Here at St. Jude they’re making real progress with leukemia patients.” But they couldn’t sugarcoat their own fears. Patchell’s mother, Imogene, died several years ago, but in 1997 she told a reporter for this magazine, “We were very scared. There were lots of tears and worries. The doctors didn’t mince words and we knew the disease was fatal . . . I remember daydreaming that Pat would live, and things just turned out even better than that dream.”
Even so, Patchell hasn’t forgotten the countless attacks of nausea, mouth sores, puffing up from prednisone, and one frightening bout of double pneumonia that put him in an oxygen tent and sent his weight plummeting. Today, however, he laughs and says, “In some ways it was great! I wasn’t going to school, had a game room full of games, and a kitchen full of food when my appetite returned. If you gotta go through something like that, you couldn’t be in a better place.” Thanks to his parents and his physicians — including Dr. Joseph Simone, who later became St. Jude’s director — “I assumed from the start I was going to get better, and I think that helped me a lot.”
After treatments were discontinued, Patchell received bone marrow tests — “which become more painful the older you get,” he says — and other checkups every two weeks, then once a month, and finally once a year till he was 30. Today he participates in St. Jude’s Life Study program, which started in 2007 and includes bone scans, blood work, and other tests, as well as follow-up with former patients who may have trouble from side effects from treatment — effects Patchell seems to have been spared.
Moving to Memphis in 1975, after graduating from Harding University in Searcy, Arkansas, with a degree in accounting, Patchell went to work for Holiday Inns and now works for Hilton Worldwide. He met his wife at church in 1981 and married her less than a year later. She recalls his telling her about his illness when they became engaged — to which she responded, “It just makes you all the more precious.”
The Patchetts — whose “children” through the years have been cats, including their 16-year-old orange tabby, Bad Baby — share a love of music. He played saxophone in the marching band all through school and college, and in more recent years took up banjo and guitar. Marti plays flute and, when the couple started performing at the zoo’s Front Porch Pastimes, she learned the autoharp. The band’s repertoire includes songs from the soundtrack O Brother, Where Art Thou?
Having fulfilled his mother’s daydream that he’d live and enjoy a happy life, Patchell knows he owes that fulfillment to St. Jude. “How do I put into words what it means to me? It’s really hard.” He and Marti are friends with a couple who moved to Memphis when their 2-year-old son was diagnosed with ALL. “He’s 24 now and we have watched him grow up. He’s also a musician and plays the saxophone and sometimes we play duets. So he’s like a third generation of patients St. Jude has helped. It’s an amazing place, not just for me but thousands of others.”
On a winter morning in 1972, a 4-year-old girl set out with her parents from their home in Tupelo, Mississippi, heading for St. Jude in Memphis. Just days earlier, the youngster had been diagnosed with leukemia, yet they stopped at a studio along the way to have her picture taken. After all, it was the weekend and her father didn’t think the hospital would start tests or treatment right away. Beyond that, he wanted a photograph of his little girl — because who knew what the future held?
But weekend or not, St. Jude wasted no time after Sandra Botts Owen was admitted. Staff performed a spinal tap, bone marrow test, blood work, and hooked her to an IV.
Thus began an experience that stretches over four decades and is rich with moments and people she’d never have known if not for that terrible diagnosis. Certainly early on were bad moments — the infection she developed when she sucked her thumb after a needle stick; the throbbing headaches that came with spinal taps; being woken at 3 a.m. to make the drive from Tupelo to St. Jude for ongoing tests. But she also remembers her parents’ steadfast presence; the face of a clock her mother drew on a paper plate to remind the little girl when she’d return; never feeling ill after chemo though other children suffered with nausea; and the accomplishment of sitting still by herself for the first time without her mom in the room and enduring a spinal tap alone.
And best of all, within a short time after treatment started, came the news of remission. “I continued to get chemo for two and a half years,” says Owen, but one day her doctors said, “Let her go back to what she normally does.” At that time, “I was taking dance lessons,” says Owen. “I had lost all my hair and one shocked little girl said, ‘What happened to your head?!’ My teacher wondered how I would handle that. I just told her about leukemia — I knew how to pronounce it but not how serious it was. And everybody was fine with my answer, and we went on to have our Kool-Aid and cookies!”
The friendships at St. Jude were forged early and grew deep. Owen played dolls with a patient named Carol Young Jones. Twenty years later Jones was Owen’s maid of honor in her wedding and they remain good friends. Another bond — this one between Owen and her physician, the late Dr. Manuel Verzosa — also stood the test of time and distance. Through the years, she’d send him birthday cards. And when she got married after Verzosa had moved to Knoxville, “he and his wife drove 10 hours over little side roads to reach the church here in Tupelo,” she says.
A few years later, when he and his wife renewed their vows, Verzosa’s wife sent Owen and her husband an invitation to the ceremony. “I was her ‘gift’ to him,” says Owen, “so they had to hide me in a room where I could see the service from a distance. Finally, at the reception, Verzosa’s daughter said, ‘Dad, this is someone who thinks a whole lot of you and came a long way to see you.” Owen recalls his face when he saw her — “like a light bulb coming on, the same reaction I had when I saw him after so many years.”
Her experience at St. Jude inspired Owen to become a registered nurse at the institution that saved her life. She holds the distinction of being the first former patient to work there, from 1990 to 1992. “It was wonderful,” says Owen, who now works at a nursing and rehab center near her home. “It was a comfort to the parents to know I had the same disease their child had.” While employed there she got to meet Danny Thomas — a moment that brought tears to her eyes. “I was so excited, and he was too. He said, ‘So you’ve come back to pay your dues.’”
In 1991, she married Tony Owen, an auto body mechanic with whom she’d had a five-year courtship. “I wanted to get through nursing school and he was patient with me,” says his wife. “He’s a very good listener and knew and understood about the cancer.”
He has also stood by her as side effects have taken their toll. Their first son, David, was born premature and lived only a day. During that pregnancy Owen nearly died herself, as she suffered from toxemia and eclampsia, and gained 70 pounds of fluid overnight. Three days after she delivered, she had a seizure and had to be resuscitated. She also has thyroid trouble and osteoporosis, both side effects of cancer medications. And in recent years, in tests to determine why she had muscle weakness, doctors found a benign brain tumor — meningoma — on the right side of her brain, caused by radiation. That tumor was removed and they’re watching another one that has formed.
The muscle weakness that prompted her to have scans done is a result of myasthenia gravis, an autoimmune disease diagnosed in 2006 that is currently in remission. It’s not clear if this affliction is related to past medications, but Owen is taking it and other problems in stride — and with characteristic flashes of humor. “I told a telemarketer the other day I couldn’t talk because I have a brain tumor,” she grins. “How many people can do that, and be telling the truth?” When someone remarks on the high color in her cheeks that give her a healthy glow, she says, “That’s a burn from radiation. But I don’t need blusher!”
Just as St. Jude celebrates its 50th year next month, Owen will mark her 40th year in remission. She once told a magazine reporter that she was grateful she’d had cancer — and that gratitude still holds. Blessed with Steven, a healthy son born two years after David, she says with a radiant smile, yet her voice breaking, “Each day I get up I’m grateful for another day to live. I tell people I don’t drink but I’m on a natural high. Every time I go back to St. Jude I feel welcome and blessed. I think of St. Jude as a little piece of heaven.”