Finding Hope at St. Jude Childrens Research Hospital

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To find out more about St. Jude's Thanks & Giving Program and get a list of participating companies The first thing you see is the mini-fleet of bright red Radio Flyer wagons parked in the lobby, ready to transport small passengers wherever they need to go. In the nearby waiting room, children squabble over colored markers at arts-and-crafts tables. Kids on tricycles merrily careen through corridors decorated with giraffes and elephants and Mississippi riverboats. It looks like an ordinary scene at an upscale day-care center -- until you realize that all the kids are fighting to stay alive.

St. Jude Children's Research Hospital in Memphis, Tennessee, treats some 4,600 very sick children each year -- never turning away any child for lack of funds, never asking families to pay for care or treatments not covered by insurance. Children suffering from leukemia, cancer, sickle cell anemia, AIDS and other diseases all receive the highest level of care.

Look again at the red wagons, and you'll see that some bear poignant memorial messages: "David, how long will we love you? Only forever. Mom and Dad." Many of the children are bald and wear turquoise surgical masks. The upbeat energy percolating through the premises cannot conceal the fact that the families entering the front door of the sprawling pink complex are enduring the worst experience of their lives. "Being told your child has cancer feels like being thrown out of a plane without a parachute," says Glen Carrico, a manager for Kellogg's snacks. "Your whole world just comes falling down around you."

Glen was driving on the interstate this past August, combining a mid-week business trip with a family mission to pick up a new puppy in Texas, when his wife, Donna, called him on his cell phone with devastating news: Their three-year-old daughter, Sydney, had just been diagnosed with acute lymphoblastic leukemia (ALL). It's the most common form of childhood cancer, striking nearly 3,000 children each year in the United States.

Earlier in the summer, Donna had noticed Sydney limping slightly but thought that her daughter's flip-flops were the culprit. She attributed the bruises on Sydney's knees to spirited play on the backyard Slip 'N Slide. But when the pediatrician spotted minuscule red polka dots -- petechiae -- on the toddler's abdomen, he was concerned. Blood tests confirmed his suspicions: white blood cells (lymphoblasts) were growing at an uncontrolled rate, crowding out her ability to make normal cells in her bone marrow. Sydney had leukemia. Left untreated, she would die.

The Carricos, who live in Germantown, Tennessee, had participated in tennis-tournament fund-raisers for St. Jude, but knew little about the hospital beyond that it offered hope to desperately sick kids. They never expected their child to be one. "Until you live through this experience -- and I wouldn't wish it on anyone -- you have no idea what a miracle this place is," says Glen, who gripped his cell phone tightly during his five-hour drive back to Memphis. He says it was the longest trip of his life.

Founded in 1962 by Danny Thomas, St. Jude Children's Research Hospital (named after the patron saint of lost causes) has become the foremost center for treatment of pediatric cancer and catastrophic childhood diseases in the world. From the outset, its goal has been to bring scientists and doctors together under one roof to pioneer new cures. Every patient is part of an ongoing and long-term research study. The close interaction between lab and clinic -- called bench to bedside -- clears a quick path from cutting-edge discovery to therapy. St. Jude freely shares its treatments with medical communities around the world. "Danny's idea," says Dr. William Evans, St. Jude's director, "was that one child cured in Memphis was 1,000 children cured worldwide."

The Carrico family were more fortunate than they could initially grasp. When St. Jude opened its doors four decades ago, the cure rate for ALL was heartbreakingly less than 4 percent. "Back then," says Dr. Ching-Hon Pui (pronounced Poo-ee), director of the leukemia/lymphoma division, "everybody used one drug at a time: one for remission, a second for the relapse, another for the next relapse, etc." Realizing that this approach in fact enabled leukemia cells to develop resistance to the drugs aimed at wiping them out, Dr. Donald Pinkel, St. Jude's first director, came up with a daring alternative: a cancer-killing cocktail. He combined multiple chemotherapeutic drugs with cranial radiation (since most ALL patients have leukemia cells in the brain) to launch a full-scale assault on the disease. The side effects were often horrendous, but children began to recover. It revolutionized leukemia therapy.

By the time Dr. Pui arrived at St. Jude in 1977, the cure rate had risen to 50 percent. During the '90s, it reached 80 percent. "We use the same drugs developed in the '60s and '70s," says Dr. Pui, "but we get better in how, when and how much to use at different phases of therapy. It's like cooks with a recipe. We become master chefs."

I was diagnosed in '96
But Dr. Pui cured me quick
I came back to see him in 2002
The news he gave me made me blue
So I said to him HOPTOOEY
Let's kick this cancer Dr. Pui!
-- St. Jude patient Trevor Smith.

St. Jude's current ALL protocol, called Total XV, consists of eight to ten drugs administered in fine-tuned combinations over 2 1/2 to 3 years. St. Jude is now projecting a cure rate of between 85 and 90 percent, based on early (three-year) results. While hurdles remain, doctors there believe that the previously unthinkable goal of 100 percent could one day be attainable.

When Glen Carrico finally reached Sydney's bedside, he totally broke down. "You have a vibrant little girl who's a chatterbox," he says, "and you find her lying there, so sick and not saying a word, and you're fearing the worst." He and Donna retreated to the small chamber that adjoins every patient's room at St. Jude, where parents can sleep or shower or pull themselves together. They held each other and cried as they looked through an observation window at their brown-haired daughter.

For a week, Donna never left the hospital, spending nights in Sydney's bed, cradling her and reassuring her that her favorite dolls, Brown Baby and Blue Bear, were there too. Glen, reeling with worry, raced between St. Jude and his suddenly disrupted household. In addition to Sydney, the Carricos have a 16-month-old daughter named Avery and three older girls -- two teenagers and a college student.

For Donna, the days became a numbing blur of doctors, nurses, technicians, social workers and nutritionists. "We have a very specialized team," says Dr. Pui,"but the most important member is the parent." Every medication was meticulously explained. When it was time to sedate Sydney for bone-marrow aspirations and spinal taps, Donna snuggled next to her. "Hey, Noodle," she crooned softly, while reading Sydney her favorite book, I Spy. "I spy a snowflake and I spy a basketball. Can you find them?"

"You hear all of these horror stories about chemo," says Donna, who had expected the worst. "It didn't happen." In an effort to unravel the mystery of why some children can tolerate chemo while others suffer severe toxic reactions, genetic testing is now routinely performed on every ALL patient at St. Jude to determine their potential response to specific drugs. This rapidly developing specialty of individually customized medicine is called pharmacogenetics. It can not only help patients beat disease, but can ensure a high quality of life after therapy.

Sydney made rapid progress. Within five days, she no longer had any leukemia cells in her blood. At the end of the week, the Carricos, finally able to exhale, took their daughter home. Like all patients undergoing the Total XV protocol, Sydney was scheduled to return for chemo every day for the following six weeks as an outpatient, then at regular intervals over the next 2 1/2 years. Donna and Glen were elated. "We felt it was nothing but blue skies ahead," says Donna.

Twenty-four hours later, Sydney was burning up with fever and barely able to breathe. The Carricos tore back to St. Jude, and Sydney was immediately admitted to the third-floor ICU. Because her immune system was suppressed, she had picked up a life-threatening infection that put her into septic shock -- a complication that occurs in less than 5 percent of patients. Her pancreas and bowels were inflamed, and she was raging with fever one minute and freezing cold the next.

The Carricos were petrified. "You think, Why is this happening to Sydney? Why not me?" Donna recalls. "You get angry at God." Sydney lingered between life and death as the days passed. "At one point, her blood pressure was 60 over 30," reports Glen. "We learned afterward that she was very close to having all her organs start to fail. I didn't know it at the time and am glad I didn't." While Glen's mother took care of things at home, both parents began spending nights at the hospital.

With massive antibiotics -- and, the Carricos are convinced, prayers from the members of many local churches -- Sydney slowly improved. Nine days later, still sick but strong enough to request her favorite TV show, Dora the Explorer, she was moved out of the ICU. On September 12, a month after her original diagnosis, Sydney was home celebrating her fourth birthday. "I feel good," she told her mom while zooming around on her new light blue bike with training wheels. Her outlook, says Dr. Pui, is positive, with an 85 to 90 percent chance of a cure. "We've seen Sydney almost dead," says Donna, "so if this is not a miracle, I don't know what is."

As cure rates for ALL rise, St. Jude physicians must increasingly address how side effects and aftereffects from treatment play a role in their patients' long-term outlook. "Forty years ago the whole focus was on preserving life," says Dr. Evans. "Now we are equally focused on the quality of that life." St. Jude has the most extensive after-care program in the world, closely following patients throughout their lives. (Many return each June for the hospital's annual Survivors Day.) Over time, such follow-up has led to changes in treatment. For instance, in 1999 doctors at St. Jude made the bold decision to eliminate cranial radiation as a treatment for ALL. The side effects of cranial radiation were ghastly, ranging from significant learning disabilities to the development of a second cancer, often in the brain, decades later.

Twelve-year-old Hawken Oldfather of Fairbury, Illinois, has benefited from that decision. "In any other center, he would have received cranial radiation immediately," says Dr. Pui. Late last December, Hawken, who loves to spend his free time outdoors on his family farm caring for the menagerie of goats, horses, potbellied pigs and mules, was suddenly so exhausted he could barely get off the living room couch. Like his three older siblings, he'd always had great health. "I don't think I'd ever even taken an aspirin," he says. Then, on January 7, Hawken had trouble breathing. At the local hospital, blood tests revealed an advanced case of leukemia and a huge, potentially life-threatening mass in his chest. His doctor contacted St. Jude. (Admission is by referral only.) Physicians there were alarmed enough to send a private jet and a medical team to bring Hawken and his mother, Penny, to Memphis. "It was unreal," says Penny, "like something on TV."

"This was a very, very sick boy," says Dr. Pui, "and he was a bad age. If you are going to get ALL, it's best to get it between the ages of one and ten." Instead of getting radiation, Hawken was placed on a machine that literally pulled a couple of pounds of leukemia cells out of his blood -- a procedure called leukapheresis -- and immediately started on chemotherapy, with higher doses of medication to compensate for the lack of radiation. Within two weeks, he had achieved a molecular remission, meaning that leukemia cells had plummeted to less than .01 percent.

For the following six weeks, Hawken and his mother lived at the Ronald McDonald House, one of three free facilities available to patients' families at St. Jude. Grizzlies House is for patients returning for brief treatment sessions. Target House, a luxurious complex with 96 two-bedroom apartments, a library, music room, art studio and recreation program (pool tournaments are the biggest draw) is for longer stays. Support networks develop spontaneously. "You are with the only people who can really understand what you are going through," says Penny Oldfather.

By the summer, Hawken was well enough to attend Boy Scout camp. In August, he showed his goats at the local county 4-H fair, where one of them won the top prize: Best Doe in Show. Milk from the winning goat was auctioned, and Hawken happily donated his entire take -- $220 -- to St. Jude. Still mostly bald, Hawken finds taking daily pills a drag. But he is now back in school, hanging out again with his friends, and he returns to St. Jude for treatment every six weeks. "He doesn't mind going at all," says his mother. "He loves the people there."

He's not alone in that. The relationships forged at St. Jude are lifelong. "The atmosphere there is like heaven on earth," explains 37-year-old Sandy Owen of Tupelo, Mississippi, who was treated at St. Jude for ALL in 1972, when she was four. The first St. Jude patient to become a nurse there (she has since left), Sandy has suffered aftereffects from the cranial radiation and chemo she received as a little girl. "My thyroid has about stopped working, and my bones are paper thin," she says. She lost her first child at 23 weeks. Her second child, Steven, was born weighing just over two pounds. "He's doing fine now," she says. Yet Sandy is grateful to have survived the odds that were stacked against her in 1972. And while she admits it sounds crazy, she claims also to be thankful to have had cancer.

"St. Jude has brought so much love into my life. When I got married, the doctor who had treated me at St. Jude traveled ten hours to be at the ceremony. I hadn't seen him since I was nine." St. Jude staffers will stop at nothing to make life for patients seem as normal as possible -- especially in the toughest cases. Tammy Jackson, a sunny 18-year-old from Bloomington, Illinois, had undergone radiation, chemo and stem-cell transplants to treat rhabdomyosarcoma, a soft-tissue cancerous tumor in her muscles. Now, after four years, doctors had run out of options. When Tammy announced that one of her final wishes was to get married, her family and the ICU staff mobilized. They decorated her room, provided flowers and a wedding cake, and Tammy wore a white dress as she married her boyfriend. At least 40 members of the medical staff joined in on the celebration. It was Tammy's own version of the most joyous moment in any St. Jude week: the festive end-of-chemo party.

After three years of treatment, 18-year-old Wallace McGarity of Covington, Tennessee, couldn't believe his day had finally come. Late on a September afternoon, Wallace, his parents and 12-year-old sister, Britany, gathered in the Medicine Room. "We're going to miss that smiling face," said nursing coordinator Diane Parker, "because he always came in with a smile, no matter how bad he felt." "I'm going to miss everybody too," Wallace announced as he settled into a recliner for his final dose of chemo. His face brightened. "I'm going to go wild and crazy when this is over," he said. "Then I'm going to Memphis College of Art. I know a lot more about what life's about." When his final dose of chemo was complete, the nurses and technicians crowded around for a rowdy rendition of St. Jude's send-off song:
Oh -- we love to see you every day
But now's the time we get to say
Pack up your bags
Get out the door
YOU DON'T GET CHEMO
ANYMORE!!!

Amid the applause, Wallace was showered with Silly String. His mother's eyes grew moist. "I just wanted my son to have a future," she said softly. "Now he has one."


Breakthroughs in Treatment
Personalized therapy. Researchers create genetic fingerprints that identify patients likely to benefit from -- or suffer a toxic reaction to -- treatment. Pharmacogenetics has the potential to identify ALL patients who require more or less aggressive chemotherapy based on their inherited ability to metabolize, eliminate and respond to the medications.

Bone-marrow transplant. St. Jude offers a unique transplant procedure, first developed in Germany, which makes it possible for parents who are not exact matches to be donors for their children by selecting blood stem cells from the parents for transplant.

3-D radiation. Using CAT scans and MRIs, radiologists create pictures that a computer converts into a 3-D image of a tumor exactly as it is positioned in the brain or other parts of the body. Computer-controlled radiation beams can then be meticulously aimed to attack the tumor while sparing healthy tissue.
Thanks & Giving
You can help support St. Jude and its nearly $1 million-a-day operating costs by taking part in a fund-raising campaign that kicks off on November 26, the day after Thanksgiving.

Shop. Participating stores, such as Target, 7-Eleven, and CVS, will donate to the hospital a percentage of the cost of merchandise and gift cards you purchase.

Donate. Or you can make an outright contribution at some of these retailers.

Go online. The effort will continue through the holiday season. For a complete listing of participating companies, go to St. Jude's Thanks and Giving program at .