Spotlight: St. Jude Children’s Research Hospital
By Idelle Davidson
A GIFT FROM DANNY THOMAS
In 1940, a down-on-his-luck entertainer in Detroit named Amos Jacobs was barely scraping by on $50 a week. One desperate day, Amos stopped at a church, fell to his knees, and prayed to St. Jude Thaddeus, the patron saint of hopeless causes. “Help me to find my way in life and I’ll build you a shrine,” he vowed.
Shortly thereafter, the young man landed a job as headline comedian at the 5100 Club, a nightclub in Chicago. There, he changed his name to Danny Thomas. That 3-year engagement sparked a lifetime of success in show business: starring in his Emmy Award-winning TV show, Make Room for Daddy, and producing TV classics—the Andy Griffith and Dick Van Dyke shows.
Danny never forgot his promise to St. Jude. Gradually he thought of a way to fulfill his vow. He decided to build a children’s hospital somewhere in the South and chose Memphis, Tennessee as the site.
And so, in 1962, St. Jude Children’s Research Hospital opened its doors because “no child should die in the dawn of life,” said Danny, echoing an Arabic proverb now carved into the wall of the Danny Thomas Pavilion.
Today, St. Jude is the single largest center in the United States for the treatment and research of pediatric cancer and other catastrophic childhood diseases. Its researchers are pioneers in pediatric bone marrow transplants and rare and genetic diseases. Remarkably, at this nonsectarian facility, all patient services not covered by medical insurance are absolutely free. Parents without insurance, already burdened by anguish, are never asked to pay a dime.
Towering over the hospital’s entrance is a 16-foot-tall marble statue of St. Jude Thaddeus, a mute reminder of Danny’s vow.
Inside the lobby, a nurse walking by shares a laugh and a tickle with a pale toddler in her father’s arms. Later, that nurse will drop by to see patients upstairs, whose rooms connect to “parent rooms” so moms and dads can grab bits of sleep.
Although most children at St. Jude are outpatients and walk about the hospital, many parents use “Radio Flyer” wagons parked inside the lobby to pull their kids along the corridors.
The walls sport hundreds of red, orange, blue, and yellow handprints—and in some cases, infant footprints. They’re from patients who have traveled to St. Jude from as far away as Israel and Venezuela. The prints seem to wave from the walls as if to say, “Hello, I exist.”
A few feet away in the medicine room, a dozen nurses are throwing an “off-chemo party” for a 14-year-old named Jeffrey. He has just finished more than 2 years of treatment for acute lymphocytic leukemia (ALL), the most common form of childhood cancer.
They gather around the embarrassed teenager, and with goofy grins sing new words to the Oscar Mayer Weiner song:
Our patients have the cutest s-m-i-l-e
Our patients have the sweetest h-e-a-r-t
While we love to see you every day
Now’s the time we get to say
Pack up your bags, get out the door
You don’t get chemo anymore!
They hug him and throw confetti. Jeffrey’s mom beams and takes photographs. Jeffrey was one of the lucky ones. Like most of the other young children treated at St. Jude (usually under 18), he was referred by a physician, and suffered from a disease currently under study in a clinical trial. Most children have not received prior treatment. Among the diseases treated are cancers of the blood-forming tissues (leukemias), the lymphatic system (Hodgkin’s disease), the bones (Ewing’s sarcoma and osteosarcoma), the kidney (Wilms’ tumor), and brain tumors, as well as AIDS and sickle cell anemia.
“What makes St. Jude special,” says William Evans, PharmD, hospital deputy director and chairman of the pharmaceutical sciences department, “is that we have enough patients with any one disease that we can actually develop new treatments and test them out in a single hospital.” In 1996 for example, St. Jude became the first hospital in the world to perform a bone marrow transplant on a patient with brittle bone disease. Researchers have also begun an early trial of an AIDS vaccine.
Yet the great challenge is cancer. It kills more children between the ages of 1 and 15 than any other disease. The number of cases are far fewer than adult cancers, so drug companies aren’t financially motivated to research pediatric cures, says Dr. Evans. “St. Jude sees the future as helping discover new drugs that may work only in kids,” he says.
One of St. Jude’s stars is Peter Doherty, PhD, who won the Nobel Prize for Medicine in 1996 along with his co-researcher, RoIf Zinkernagel MD, of the University of Zurich. Dr. Doherty’s research on the immune system has led to major breakthroughs in the development of organ-transplant procedures, vaccines, virus infections, and cancers.
St. Jude’s studies on childhood leukemia studies were the first to prove that the disease could be cured. “The concept that you could organize therapy, give drugs in a sequence over a period of several months or even years, and eradicate cancer from the body—that was an amazing concept when it was first put forward,” says hospital director Arthur Nienhuis, MD. The staff takes great pride in their 80 percent cure rate of children with ALL, he says. That’s up from less than 5 percent in 1962. A smaller number of patients have acute myelogenous leukemia, which is much tougher to treat. Generally, only half of those children survive. Many leukemia patients require bone marrow transplants as their best chance of cure.
St. Jude is now embarking on an ambitious $1 billion, 5-year expansion which will more than double the size of its campus. Plans call for the creation of the children’s Infection Defense Center, focusing on bone marrow transplants, AIDS, tuberculosis, cholera, and pneumonia. Scientists at the new Genetic Diseases Center will concentrate on inherited immune disorders such as osteogenesis imperfecta, sickle cell disease, and metabolic storage disorders.
A teaching hospital affiliated with the University of Tennessee, St. Jude freely shares its research and discoveries with doctors and scientists around the globe. The hospital is expanding its international outreach, helping doctors in Jordan, Lebanon, Brazil, China, El Salvador, and elsewhere set up pediatric oncology programs. “Children in these places are, in a sense, the forgotten children of the world,” says Dr. Nienhuis.
ONE CHILD AT A TIME
Fifteen-year-old Kelsey Tatum of Westfield, Indiana never thought of herself as anything but a healthy teenager. That all changed last summer. Smiling shyly through braces, the honor student smoothes her red hair away from her eyes and shares her story. At the moment, she’s sitting in a no-frills nurse’s lounge waiting for her next radiation treatment. Her mom, Susie is beside her. “I was at soccer practice and I noticed numbness in my left toe,” recalls Kelsey. “I thought it was really strange. By the end of practice it had pretty much gone all the way up my leg.”
Kelsey and her mom went to the doctor but he wasn’t sure what to make of it. He scheduled an MRI for later in the week. The morning of the test—coincidentally Kelsey’s first day of high school—Susie had a premonition. “Something told me to check on her and I peeked into her bedroom,” she says, wiping away tears and gazing lovingly at her daughter. “She was having a seizure. It had been going on long enough to turn her lips blue.” Within 5 minutes paramedics arrived and gave Kelsey oxygen. They quickly transported her to the local hospital. The diagnosis: a brain tumor.
After undergoing surgery, 6 weeks of chemotherapy and 13 days of radiation with more to come, Kelsey says she’s handling most of the ordeal. One of the hardest parts for her is not attending school, which she loves. “I’m not doing real well with my studies because I’ve been feeling so sick,” she says quietly, her face twisted with disappointment.
Yet she and her mom have learned some precious life lessons. “None of us really knows what will happen to us,” says Susie. “We’ve overcome a lot of obstacles and learned to take one day at a time.” For her part, Kelsey advises, “Spend time with people who make you happy.”
Today, a phenomenal $350 million pours in each year to St. Jude from the hospital’s fundraising arm, the American Lebanese Syrian Associated Charities, or ALSAC, as it’s known. According to The NonProfit Times, ALSAC ranks just under the American Heart Association as the fifth largest health-care charity in the country in terms of total revenue.
When Danny Thomas first began raising money for St. Jude he turned to his Hollywood pals. Tony Bennett, Bob Hope, Frank Sinatra, and Elvis Presley donated their time by giving benefit concerts. The Memphis business community also pitched in. Danny, the proud son of Lebanese immigrants, traveled the U.S. by car with his wife, speaking to small groups of Arab-Americans, asking for donations. By the mid-1950s, Danny had raised enough to build St. Jude. He then faced the daunting task of funding its annual expenses.
In 1957, Danny met with 100 representatives from the Arab-American community in Chicago to form ALSAC. Their sole purpose: funding the hospital. Richard Shadyac, the charity’s national executive director, was an original ALSAC/St. Jude board member. He explains why St. Jude was so important to all of them:
“The dream was to treat children with catastrophic diseases free, totally free. We wanted all children to be admitted without regard to race, religion, or ethnicity. And we wanted to honor our people.”
ALSAC’s bylaws stipulate that 80 percent of the board must be of Arabic speaking heritage. “We wanted to say to the United States, we’re giving you this great research institute as our way of saying thank you for allowing our fathers and forefathers to come to this great country and make successes of themselves,” Shadyac explains.
These sentiments appear in the marble and terrazzo interior of the Danny Thomas/ALSAC Pavilion across from the hospital. Etched in Arabic are the proverbs, “He who denies his heritage has no heritage,” and, “Those who work for the good are as those who do the good.” The building itself, with its golden dome designed after the Dome of the Rock in Jerusalem, inspires all who enter to speak in a reverent hush. Inside its chapel are richly hued stained-glass windows. Each is dedicated with love, hope, and courage to children of all cultures, ethnicities, and religions.
Today ALSAC consists of an army of dedicated volunteers and about 300 paid fundraisers. They stage such events as bike-a-thons, golf tournaments, gala benefits in Monte Carlo and New York. The money they generate handily covers the hospital’s $650,000 daily costs.
During Kelsey Tatum’s treatment, the Indiana teenager and her mom lived at Ronald McDonald House, courtesy of ALSAC, which pays for patients and one parent to fly or drive to Memphis from their hometowns. ALSAC also pays for all housing and meal expenses. Families stay in area hotels for short visits, the Ronald McDonald House for stays of about 6 months, or at the new Target House for up to two-and-a-half years. Just minutes from the hospital, the 50-unit, two-bedroom apartments and community areas at Target House were built with proceeds donated by Target Stores, a host of other corporations, and well-known personalities. Benefactors include golfer Tiger Woods, skater Ekaterina Gordeeva, Olympic Gold Medalist and cancer survivor Scott Hamilton, and singer Amy Grant.
“Somebody has got to take care of these children,” says ALSAC director Richard Shadyac. “And because of the generosity of its wonderful donors, we’re able to do that at St. Jude. We’re very blessed.”
This shrine, this hospital that Danny built, not only fulfilled his life, it also provided his final resting- place. Danny’s tomb lies in the Pavilion, framed by the tranquil Danny Thomas Memorial Garden.
March 2001 InTouch