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PromiseA publication of St. Jude Children’s Research Hospital Autumn 2002

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Main hospital line: 901-495-3300 Donations: 1-800-822-6344 Wild Physicians referrals: 1-888-226-4343 Public information: 901-495-3306 Visit our Web site at www.stjude.org. page 4 St. Jude Children’s Research Hospital, American Lebanese Syrian Associated Charities and ALSAC are registered trademarks. Promise is a quarterly publication of the Department of Public Relations St. Jude Children’s Research Hospital was founded by the St. Jude Children’s Research Hospital 332 N. Lauderdale A publication of St. Jude Children’s Research Hospital Autumn 2002 Memphis, Tennessee 38105 Promise late entertainer Danny Thomas. It opened February 4, 1962. The hospital St. Jude Children’s Research Hospital’s mission is to find cures for was created because of a promise Danny made during the depression era to children with catastrophic diseases Features through research and treatment. 3 One More for the Rhodes St. Jude Thaddeus, the patron saint of the hopeless. Leaving a legacy with a charitable gift annuity Hospital Director Arthur W. Nienhuis, MD ALSAC National Executive Director Richard C. Shadyac 4 Call of the Wild “Show me my way in life,” Danny prayed. In return, Danny promised to build Future zoo owner Eli Barr ALSAC/St. Jude Vice President of Communications and Public Relations St. Jude Thaddeus a shrine. That shrine became a hospital that would treat Jerry Chipman Director of Public Relations 9 Party with a Purpose Judith W. Black ® children regardless of race, color, creed or their ability to pay. This remarkable Rockin’ and rollin’ with Up ’Til Dawn ALSAC Director of Communications George Shadroui event also inspired the name of this magazine, Publications Manager Lois M. Young 10 The Good News Clinic Editor Helping kids with endocrine problems Promise. Elizabeth Jane Walker Art Director Jessica W. Anderson 14 Tools of the Trade Photo Editor Structural biologists strap on their Phillip Murphy tool belts Photographers Seth Dixon 19 Strings Attached Laura Hajar Evanne Newman It’s more than just a colorful sewing project Contributing Writers Tanuja Coletta Alicia H. Matthews Amanda Shaker Highlights Guest Author Frederick W. Smith 2 Literary Benefits: The Right Words at the Right Time Editorial Advisory Board Research Highlights Sandra d’Azzo, PhD Bonnie Cameron Leslie Davidson Pat Flynn, MD Perspective Amar Gajjar, MD Mark Hendricks 24 Frederick W. Smith Lisa Hill FedEx and St. Jude: Partners saving lives Ed Horwitz, MD, PhD Julia Cay Jones, PhD Dana Marshall, PhD Ken Massey Promise is now available on the Internet! David McKee Keri Meyer Check us out at www.stjude.org/Promise. Carlos Rodriguez-Galindo, MD Clinton Stewart, PharmD Jerrylaine Walker, PhD Sally Wiard St. Jude Children’s Research Hospital is an equal-opportunity employer. For inquiries about John Zacher stories in this publication, call the Public Relations department at (901) 495-3306 or e-mail St. Jude Children’s Research Hospital, Memphis, Tennessee [email protected]. Visit our Web site at www.stjude.org/Promise. Articles and pho- tos may be reprinted with permission. ©2002. On the cover: St. Jude patient Eli Barr. Photo by Laura Hajar. Highlights One More for the Rhodes Octogenarians William and Millicent Rhodes are survivors. Their Literary benefits words that were delivered by a loved treat A-T patients with hematological Marlo Thomas, National Outreach one, heard in a movie or play, sung on cancers. gifts will ensure that St. Jude children are survivors, as well. director for St. Jude Children’s the radio, told in a joke or even drawn Research Hospital, has published an in a cartoon. inspiring new book that draws on the “All of these stories confirmed Bone bonanza B Y A LICIA H. MATTHEWS life experiences of more than 100 something I’ve always suspected,” St. Jude researchers have discovered remarkable people. The Right Words observes Thomas, “that whether we that treatment with bone marrow at the Right Time features the wit and know it or not, each of us carries our mesenchymal cells, specialized bone- wisdom of Al Pacino, Paul McCartney, own unique slogan, a custom-made making cells, has the potential to And at the age of able to enjoy life as he and his wife Gwyneth Paltrow, Walter Cronkite, catchphrase that resonates throughout enhance the therapeutic effects of bone 89, he and his wife have over the years. Ruth Bader Ginsburg, Sarah Jessica our lives.” marrow transplantation in patients Millicent, 85, have The couple has made a charitable Parker, Cal Ripken Jr., Steven For many weeks, the book has been with osteogenesis imperfecta, or brittle lived through more gift annuity and have included Spielberg, Itzhak Perlman, Venus listed on The New York Times best- bone disease. “This is the first human than most people St. Jude in their will. A charitable gift Williams, Rudolph Giuliani, seller list, skyrocketing to No. 1 in trial to clearly show the therapeutic could ever imagine. annuity enables donors to make gifts Muhammad Ali, Katie Couric and May. All proceeds from the volume potential of mesenchymal cells and When they were to St. Jude while still receiving the many others, including Nobel laureate benefit St. Jude. represents a significant step forward young, their only investment income for themselves or Peter Doherty, PhD, of St. Jude. The in the development of cellular thera- child died. That’s their families. In exchange for gifts to contributors recount how they reached pies,” said Edwin Horwitz, MD, PhD, why the decision to St. Jude, donors or their beneficiaries crucial turning points by hearing the Genetic link discovered of the St. Jude Hematology-Oncology donate to St. Jude receive fixed payments for life and right words at the right time. Interactions between the genes department. Children’s Research reap certain tax benefits. These kinds The first-person accounts encom- mutated in two different rare inherited The findings appeared in the June Hospital was an of gifts allow donors to help the chil- pass life’s struggles and adventures, disorders, Fanconi anemia and ataxia- issue of the journal Proceedings of the easy one. “We lost dren of St. Jude today while enhancing demonstrating how each individual telangiectasia (A-T), provide new National Academy of Sciences. our daughter,” says their own financial futures. found hope and wisdom through insights into tumor development and William, “but we St. Jude families may never have the responses of tumors to believe in doing opportunity to meet these generous therapy. The study was Something to grow about what we can to donors, but they can be assured that led by Michael Kastan, Children whose treatment for acute help. St. Jude is the Rhodes family is pulling for them. MD, PhD, and Bo Xu, lymphoblastic leukemia (ALL) causes William and doing a good thing “We just love to help people, and MD, PhD, of St. Jude them to stop growing can safely regain Millicent Rhodes by helping these we’re glad to be able to do what we Hematology-Oncology height with growth hormone shots, can for the chil- and Alan D’Andrea, according to St. Jude scientists. ALL A charitable gift annuity allows William dren at St. Jude,” MD, of Dana-Farber treatment can hamper the body’s pro- “Survivor” says William. Cancer Institute at duction of growth hormone, which is has become a commonly used word in and Millicent Rhodes to help the children “My wife and I Harvard Medical necessary to attain normal height. our society. From the self-assured have led an excit- School. The collabora- Wing Leung, MD, PhD, of the St. Jude lyrics of the singing sensation of St. Jude today while enhancing their ing life. Our hope tion unveiled a genetic Hematology-Oncology department Destiny’s Child to the newest rage in own financial future. is that these chil- link between Fanconi and his colleagues compared the long- reality television, everyone is focused dren will survive anemia and A-T. term health of childhood ALL sur- on what it means to be a survivor. But their illnesses and Published in the May vivors treated with growth hormone to one St. Jude donor knew the meaning children, and my wife and I want to do be able to live long, prosperous lives.” 2002 issue of Cell, this that of childhood ALL survivors not of the word long before it became one our part.” For information about how you can discovery helps explain treated with it. The researchers found of the latest trends. Residents of Nashville, Tennessee, help St. Jude children through a chari- the responses of normal that the group treated with growth William Rhodes is a veteran of William and Millicent donate to sever- table gift annuity or other type of gift, and tumor cells to hormone had no higher risk of a World War II. He clearly remembers al organizations around the world. But call the Gift Planning department at radiation treatment relapse or second cancer than the fighting the war and almost losing his they have a unique bond with St. Jude. (901) 578-2108, or toll free at and chemotherapy. other group. life from injuries incurred when a Because he has overcome difficult cir- (800) 877-5833, ext. 2081. St. Jude recently The researchers reported their find- bomb landed near him on Normandy cumstances, William carries a special opened an ataxia- ings in the July 2002 edition of Journal Beach. Lt. Rhodes received several rib- place in his heart for the children at telangiectasia clinic to of Clinical Oncology. bons for bravery during his tenure. St. Jude. His wish is that they will be

2Promise Autumn 2002 Autumn 2002 Promise 3 LAURA HAJAR Call of the Wild

All Noah had to do was prop open the Ark’s door, and the animals marched right in. But Eli Barr is facing a few more challenges on his way to owning a zoo.

B Y E LIZABETH J ANE WALKER

very blind date should be this hot. Moving with the fluid grace of a dancer, Helen turns her luminous brown eyes toward Eli as he strokes her gleam- ing hair. Then — smack! — she Emakes her move. Thirteen-year-old Eli and zookeeper Morgan Powers visit with one of Eli’s new friends at the Memphis Zoo. Elijah Barr grins, enraptured. “The thing I liked best was when she gave me that k-i-s-s,” he admits after the steamy rendezvous. Helen is a California Eli’s ark about the animals, I fill my brain with Facing the flood sea lion who lives at the Eli savors each portion of the nature,” he asserts. But this obsession Eli’s infatuation with zoos began in Memphis Zoo. When Memphis Zoo as if it were a smorgas- with animals is no passing phase. Eli Memphis in 1994. That’s when he zoo officials offered bord, offering delectable morsels at says it’s a calling. arrived at St. Jude Children’s Research Eli an opportunity to every turn. “Now, if you walk this “Every night in my dreams, God Hospital for his second bone marrow feed the sea lions, he way, you can see the cougars,” he says, speaks to me. He says, ‘I want you to transplant to treat Hurler’s syndrome, leapt at the chance. “I gesturing with the finesse of a sea- save my wonderful world,’” explains an extremely rare genetic disorder. think they fell in love soned tour guide. “Up here on the Eli. “I’m going to try to go around the Children with Hurler’s lack an with me,” observes Eli, right you’ll see a leopard and my world and save animals, and then I’ll enzyme that breaks down sugar mole- who communicated favorite cat, the cougar, or puma.” The bring those animals to my zoo.” cule chains. As these complex sugars with the creatures young naturalist garnishes his com- Eli’s favorite uncle, architect Paul accumulate, they wreak havoc on the through deft hand move- mentary with tidbits of trivia, excla- Engert, created an architectural render- body’s organs and bones, causing ments, a calm demeanor and mations of delight and witty observa- ing for this zoo, which Eli hopes to severe physical deformity, dwarfism a little zookeeper assistance. tions. Every so often, he pulls out his build near his hometown. “I’ve been and mental retardation. Waste prod- It’s all in a day’s work for Eli; camera and captures an animal on looking all over the state of ucts build up in the eyes, prompting after all, this St. Jude patient is deter- film. These images will eventually Washington for land to buy,” Eli says. corneal clouding; excess molecules in mined to own his own zoo someday. reside in one of many photo albums, In a spiral-bound notebook, he dedi- the auditory nerves cause deafness. alongside snapshots of his family’s cates one page to each section of his The stored molecules also damage the cockatiels, Jerry Lee and Elvis, and a zoo, listing the animals that will reside heart, brain, lungs and joints. With his no-nonsense attitude, his dry sense picture of himself, shoulders draped in each habitat. Thumbing through his Soon after birth in April 1989, Eli of humor and his brash honesty, Eli Barr with a massive California king snake. notebook, Eli points out other details: began suffering recurrent respiratory attracts admirers like a zoo attracts kids. “Eli is probably one of the most fun and funniest Eli is a walking encyclopedia of “Here’s the gift shop, Corky’s Bar-B-Q, infections. Kathy and Rob Barr also people you’ll ever meet,” says fellow St. Jude animal lore, sharing details gleaned the petting zoo, the vet’s office, the noted an odd curvature in his lower patient Danny Kurth. from books and videos. “When I read trash cans and the bathrooms.” back. “Our pediatrician said, ‘Oh, the EVANNE NEWMAN EVANNE 4Promise Autumn 2002 Autumn 2002 Promise 5 pany denied coverage for a second An avid Cubs fan, Eli knows statis- transplant, and the hospital refused to tics and jersey numbers as well as any perform the $300,000 procedure, even commentator. “He can talk about LAURA HAJAR though the Barrs offered a substantial baseball for days,” says St. Jude Child LAURA HAJAR down payment. “Then we talked to Life Specialist Shawn Brasher. “I like the state of Washington,” says Rob. the Braves, so he makes signs and puts “They said, ‘If you give everything them on my office door saying, ‘Cubs away that you have and declare bank- rule; Braves drool.’ Anytime he sees ruptcy, then we will pay for it.’” That me, even if we’re on opposite sides of suggestion appalled Rob, a nuclear the cafeteria, he yells, ‘Go, Cubs!’” engineer, and Kathy, a teacher. “I think When a Cubs game is in progress, the hardest thing was to know that don’t try to call Eli at Target House. there was treatment available, but not Chances are, he’s talking on the phone to be able to get it,” says Kathy. to his friend Derek Friedel, who is Then they discovered St. Jude, a simultaneously watching the game in hospital that would treat Eli regardless Washington. The two have often been of his family’s ability to pay. At teammates, with Derek’s father, Bill St. Jude, Eli again received bone mar- Friedel, serving as soccer coach. row from an unrelated donor. His “Even when the other kids were a Eli pauses from discussing the Cubs’ latest condition improved dramatically as a head taller than him, we’d set him as exploits to let Paul Woodard, MD, of Stem Cell Transplantation complete an result of the enzyme boost, but once goalie,” says Bill. “He just wouldn’t examination. again he lost the graft. “The doctors quit. Every game, he would give it his told us, ‘We’re not going to give up all.” on you. Go home and recover from One day, Eli fell and nearly passed spine was probably twisted when he this transplant, and we’ll figure out out while running down the field dur- was in the womb. It’ll straighten out,’” how we’re going to get Eli through ing a soccer game. “He got up and Kathy recalls. But the Barrs insisted this,’” Rob says. asked to play again,” recalls Rob. “He on obtaining an X-ray. The couple “Every night in my dreams, God speaks to me. He says, ‘I want you to save my wonderful world,’” learned the diagnosis on their 16th “Every month, every day he was getting worse. explains Eli, who chats with his mom, Kathy Barr, in the Memphis Zoo’s butterfly exhibit. wedding anniversary. “They called us in and said, ‘Your son has Hurler’s. Eli wouldn’t make it through if he didn’t have It’s a terminal disease, and he’s likely ferocity as before, so his baseball team members approached the agency for going to die before he’s 5 years old,’” this transplant.” welcomed him back as its official bat special permission to use the procedure recalls Rob. boy, a position that Eli cherishes. on Eli.

Unwilling to accept that pronounce- LAURA HAJAR “We were seeing him decline,” says ment, the Barrs began researching the St. Jude staff members suggested got mad when we wouldn’t let him.” Rob. “Every month, every day he was syndrome and discovered a new treat- that the Barrs wait until Eli began to When Eli visited a cardiologist in Surviving the storm getting worse. Eli wouldn’t make it ment that offered hope: bone marrow regress before making him undergo a Spokane, Washington, the Barrs Last year, the deterioration of Eli’s through if he didn’t have this trans- transplantation. If Eli’s bone marrow third procedure. “The risk of a third learned that blood flow through his health accelerated. His hearing and plant.” could be replaced with genetically transplant needed to be outweighed by heart was only 40 percent of normal. mental abilities decreased, and his liver Eli received stem cells in February healthy marrow, his body might begin the risk of the Hurler’s syndrome,” His mitral valve had been damaged by and spleen enlarged. 2002 from “that handsome man producing the missing enzyme. At a Kathy explains. That risk would soon the progression of Hurler’s. “If he Rupert Handgretinger, MD, Mom’s married to.” The FDA has sub- hospital in Seattle, Washington, Eli change after one fateful soccer game. doesn’t have surgery within the next director of Stem Cell Transplantation sequently given St. Jude approval to became the 57th patient in the world few weeks, he’s probably going to die,” at St. Jude, had recently begun trans- use the experimental process on many to receive a bone marrow transplant said the physician. The cardiologists planting stem cells that were obtained patients who require parental stem cell for Hurler’s. Before the transplant, Wild about sports were concerned because they had never from parental donors and purified with transplants for various catastrophic ill- Eli was deaf; six months after trans- The only thing Eli likes as much before replaced a heart valve in a child a revolutionary new procedure. Instead nesses. plant, he had recovered almost 90 per- as animals is sports—baseball, golf, with Hurler’s or in a bone marrow of infusing patients with bone marrow, “Eli’s doing extremely well,” says cent of his hearing. His mobility fishing, soccer, football. You name it, transplant recipient. which can include unwanted cells, Paul Woodard, MD, of Stem Cell improved, and he began to grow taller. and he follows it. During a FedEx The doctors told Eli that he would Handgretinger and his staff could Transplantation. A weekly DNA study But the bone marrow did not engraft St. Jude Classic patient event in June, be in the hospital for at least three Eli and his dad share a passion for golf. process billions of parental cells, isolat- helps Woodard evaluate the percentage completely. For a couple of years Eli Eli sunk a hole-in-one with a fancy, weeks. The energetic young man “There’s only one person who likes golf ing the precious stem cells for trans- of donor cells in Eli’s blood. When continued to do well, but then he new putter. Turning to one of the went home after only three days, deter- more than Eli and that’s me,” admits Rob. plantation. Because the method had yet the level decreased, Eli received addi- Here, Eli concentrates on the ball during a began to regress. professional golfers, he asked, “Can mined to return to the playing field. FedEx St. Jude Classic patient event at to be approved by the Food and Drug tional stem cells and lymphocytes The Barrs’ health insurance com- you beat that?” He couldn’t compete with the same Target House. Administration (FDA), St. Jude staff from his dad.

6Promise Autumn 2002 Autumn 2002 Promise 7 EBERT PHOTOGRAPHY Woodard is optimistic about Eli’s “The hardest thing was to know that there was future. “In the past, none of the chil- Party with a Purpose dren with Hurler’s survived, so we treatment available, but not to be able to get it,” don’t know whether or not he’ll have B Y A MANDA S HAKER problems with his joints as he gets recalls Kathy. Then the Barr family discovered St. Jude. older,” Woodard says. “We’ll watch St. Jude survivor Kathleen Brown and thousands of other college students across the nation are with the chal- world, with people from every walk of lenges of Hurler’s life and many different countries. organizing mega-parties to raise funds for St. Jude. syndrome. After They’re all living here with the com- KATHY BARR KATHY Eli came to mon goal to make our children well. Students at the University of Illinois in her heart. Now, she has taken her St. Jude for his To me that’s a gift. In this day and age at Urbana-Champaign (U of I) are no love of St. Jude to Southern Illinois. stem cell trans- when there’s so much fighting and peo- strangers to a good party. So when “I brought the Up ’Til Dawn pro- plant, the stu- ple cannot get along and the world is sophomore Kathleen Brown talked gram to U of I because I believe in dents at Chief in such turmoil, here’s this little island about throwing an all-night bash, giving sick children a chance to live Kathleen Brown Joseph Middle of sanity where people care about you no one objected. It looked like a typi- the sort of life that we sometimes take School held a pep no matter what color your skin is, no cal college event—hundreds of young for granted. Being a St. Jude survivor, rally to honor the matter what church you belong to, no adults dancing, singing, staying up I wanted to give back to the hospital sleep-deprived college students up all popular seventh- matter what. That’s a remarkable thing late. But these Illinis weren’t just party- that allowed me to live a healthy and night. As ALSAC’s first program for grader. Eli enjoys to me.” ing for the fun of it; they were raising normal life,” Brown explains. “The young adults, Up ’Til Dawn has sur- watching the Rob takes comfort in his unwaver- money for St. Jude Children’s Research St. Jude staff is my second family, and passed all expectations. More than 70 videotaped rally. ing conviction that something exciting Hospital. I am grateful that I was treated with campuses participated in its fourth As the camera is in store for his younger son. “Kathy Brown co-chaired U of I’s Up ’Til such loving care. I can never repay year. The program raised more than ® pans the gym, and I are convinced that there is some- Dawn program last February. Under them for their 800 children thing in this world that’s going to be her leadership, U of I raised $51,000, efforts.” College students across the country whoop encour- very special for Eli. There is some call- more than any other first-year Up ’Til Brown caught agement, holding ing for him. None of us knows exactly Dawn. She brought the program to the Up ’Til Dawn raised more than $1 million through ® banners embla- what it is, but it’s going to be great.” campus not just for St. Jude patients, bug that has been Up ’Til Dawn events last year. Eli dispenses batting advice to baseball superstar Sammy zoned with Eli’s but for St. Jude survivors like herself. swarming cam- Sosa of the Chicago Cubs. name. Then the In August 1995, while performing a puses nationwide. chant begins: “Eli! Tiger pause routine cyst removal on Brown’s back, “We are really pleased with schools’ $1 million in 2002, with 110 schools Eli! Eli!…” The Today, Eli is learning about tigers doctors found a grapefruit-sized tumor, responses to the program. It’s a fun committed for 2003. videotape arrived from his new friend, a 525-lb. Bengal which was diagnosed as Ewing sarco- event, and it gets the students interest- Up ’Til Dawn generates campus- him closely over the years to see how the week after Eli’s transplant. “It tiger. TOM II, the mascot of The ma. At St. Jude, the 13-year-old under- ed in the hospital,” says Jeff Gardino wide awareness of St. Jude. A student he does and to make sure that his made me feel much better,” he says. University of Memphis, emerges from went 52 weeks of chemotherapy and of ALSAC, St. Jude’s fund-raising executive board leads each Up ’Til engraftment stays stable.” The St. Jude Eli seems to attract people with his his private swimming pool and ambles, six weeks of radiation. On December organization. The student-run program Dawn program by coordinating the Endocrine Division (see related story, sense of humor, his brash honesty and muscles rippling, toward the fence 2, 1996, with her cancer in remission, extends throughout the year, culminat- finale, organizing fund-raisers and page 10) will also begin giving Eli his paucity of self-pity. “Eli is probably where Eli stands. The enormous cat Brown left Memphis carrying St. Jude ing in an extravaganza that keeps recruiting teams. To participate in the

growth hormones to increase his one of the most fun and funniest peo- turns his steady gaze toward Eli. “Hi, COURTESY OF THE DAILY ILLINI all-night bash, teams must raise money chances of growing taller. ple you’ll ever meet,” comments fellow TOM!” calls Eli, who, like the fabled through special events and a letter- Woodard says Eli is fortunate to St. Jude patient Danny Kurth. It must Doctor Doolittle, converses with every writing campaign. U of I’s letter cam- have avoided some of Hurler’s cruel be true. Woodard deems Eli “hilari- animal he meets. paign alone raised $34,599, and symptoms. The most obvious differ- ous”; Derek calls him “smart, enter- After touring TOM’s habitat and Brown’s fund-raisers included spaghetti ence between Eli and many other chil- taining, funny and a jokester”; and watching him eat a chunk of raw dinners, Krispy Kreme doughnut sales dren with the disorder lies in his bright Derek’s mom, Vicky Friedel, terms Eli meat, Eli grasps his mother’s hand and and a date auction, to name a few. intelligence. Doctors theorize that each “an original.” “He’s Elijah, and that’s turns to leave. As gates clank shut and If the teams fulfill the entrance fee bone marrow transplant gave Eli a all you can say,” Rob quips. lock tumblers fall, TOM emits a deaf- requirement, they are free to party! boost of the crucial enzyme, which Kathy derives support from her ening roar. Eli laughs heartily in The drug- and alcohol-free finale keeps aided in brain development. faith, her husband, her friends and the response. Emerging from the building, students awake with live music, danc- people at St. Jude. “This is a test of he announces, “I think he really liked ing, hypnotists, karaoke, patient faith,” says Kathy, “in my personal me!” speeches and other entertainment. Love uncaged faith in God, and in my faith in the Another day, another date for Eli With last year’s success still fresh, Eli, his parents and his older doctors at St. Jude. We’ve had this Barr—golfer, Cubs fan and future zoo Brown looks forward to leading anoth- brother, Ben, have an extraordinary extraordinary opportunity to live at owner. er Up ’Til Dawn, bigger and better support system that helps them deal Target House, which is a sort of mini- Students from the University of Illinois at than the last. Urbana-Champaign show their St. Jude 8Promise Autumn 2002 spirit during last year’s Up ’Til Dawn. Autumn 2002 Promise 9 LAURA HAJAR

TheTheGoodGood BY ELIZABETH JANE WALKER The St. Jude Endocrine Clinic NewsNews helps patients recover from the effects of treatment and CLINICCLINIC return to normal lives.

hen Trista Matlock was in Most people don’t realize that just above the pituitary gland near the second grade, she St. Jude has an Endocrine Clinic, the bottom of the brain. David learned how to give herself but Trista’s dad is a vocal advocate was horrified when he learned the injections, using oranges as of the service. “If it were not for diagnosis. “I was scared to death practice subjects. Today, the Endocrine Clinic, Trista would to take Trista to St. Jude,” he W she spends her days awash now be about the same size she recalls. “I thought that’s where in a sea of orange, working at was when she was in the first kids go to die. It took me a while Tennessee Sports Zone, her fami- grade,” says David Matlock. to realize that that’s where kids go ly’s store, and maintaining their “When doctors found my to live.” Web site while she completes her tumor, they said it would be a mir- senior year in high school. acle if I reached 5 feet tall,” says She still gives herself those Trista, who has now surpassed Kids at risk injections. As a result of a brain that prediction by 5 inches. Trista’s tumor and its treatment As a result of a brain tumor, tumor, Trista’s body does not pro- Trista’s parents always knew wreaked havoc on her endocrine Trista’s body does not produce duce the hormones she needs to she was one in a million, but when system. This system consists of a the hormones she needs to grow, respond to stress or grow, respond to stress or develop their daughter was in the first group of structures that include develop sexually. So for the sexually. So for the past 12 years, grade they found out that she had the hypothalamus, pituitary, thy- past 12 years, she has been she has been receiving care from a disease that struck with similar roid, parathyroid, adrenal, pan- receiving care from endocrine endocrine clinicians at St. Jude odds. Trista had craniopharyn- creas and reproductive glands. clinicians at St. Jude. Children’s Research Hospital. gioma, a rare tumor that occurs Each gland secretes chemical mes-

10 Promise Autumn 2002 Autumn 2002 Promise 11 sengers called hormones into the children with sickle cell disease may not be identified until they bloodstream. These hormones affect and AIDS. become obvious. “If the patient has

almost every bodily function by trans- “Almost all St. Jude patients are at symptoms, then it may be too late,” SETH DIXON ferring information from one set of risk for endocrine problems,” Schreiber says. “For example, if a 15- cells to another. Hormones regulate Schreiber says. “Endocrine is actually a year-old first comes to us because of growth and development, metabolism ‘good news’ clinic, because there are abnormally short stature, we may not and energy, tissue function, sexual medications and other interventions be able to help that child grow because maturation and reproductive available to treat almost every he or she may have completed the processes. endocrine problem we see. Our goal is growth process. On the other side of Trista experienced damage to her to put the body back into the state it the spectrum, if a patient has undiag- pituitary gland, a pea-sized structure would have been before the cancer or nosed stress hormone deficiency and located at the base of the brain. Often treatment ever happened. If patients no has a severe illness or undergoes sur- dubbed the body’s master gland, the longer produce certain hormones, we gery, that patient may die from organ pituitary produces growth hormone, would give them medications to failure because stress hormone keeps thyroid hormone, puberty hormone replace those hormones.” our blood pressure from plummeting and stress hormone and secretes sub- Robert Danish, MD, clinic director, in extreme situations.” stances that control several other says the treatment of endocrine disor- endocrine glands. ders has increased as survival rates The pituitary releases hormones have skyrocketed. Life after treatment that control the ovaries and reproduc- “Years ago, because so many chil- Patients come to the Endocrine tive processes; because her pituitary is dren died of their cancer, no one was Clinic with a wide range of problems. damaged, Trista must take estrogen. really concerned about long-term life They may be at risk for reduced She also lacks an adequate level of thy- issues,” he observes. “Today, it’s growth rate, osteoporosis, obesity, dia- roid hormones, so she must take med- absolutely incredible how many chil- betes, or early or late onset of puberty; ication to combat hypothyroidism, a dren are able to survive cancer. With children with Hodgkin lymphoma may condition that causes fatigue, slow that has come a whole new field that experience thyroid damage; patients heart rate, weight gain and delayed deals with complications of treatment. who have pelvic radiation may have puberty. If Trista were to undergo Our presence at St. Jude means that testicular or ovarian damage; patients Randi Schreiber makes check-ups fun, says Jerry Wright, who perfects his bubble-blowing physical trauma—a car wreck or high we can provide much, much better with certain brain tumors may develop techniques in the Endocrine Clinic. When he was 5 years old, Wright underwent chemother- apy and radiation to treat medulloblastoma, a brain tumor. Today, the active 10-year-old care to cancer hypothyroidism; children with damage must take growth hormone, thyroid hormone replacement and stress hormone replacement. survivors.” to the pituitary may develop diabetes “I was scared to death to take Trista to Schreiber says insipidus, a dangerous condition that few cancer insti- causes excessive urination. The litany was a size 22, and she just felt terri- vide St. Jude researchers with the they would work with us to switch and tutions have clin- of possible complications goes on and ble,” recalls Schreiber. “She never ate opportunity to help survivors lead swap medicines around until we would St. Jude. I thought that’s where kids ics devoted to the on. But Schreiber cites an equally much—just salads—and she exercised, healthier lives. finally get the dosage amounts just long-term effects impressive list of success stories. but she kept gaining weight.” Schreiber right,” he says. “I just can’t say enough of oncology Three years after completing thera- helped the young woman obtain spe- Going forward, giving back good things about them.” go to die. It took me a while to realize that treatment on the py, one 19-year-old cancer survivor cial approval to take a new, experi- “I take a gajillion pills,” says Trista, Trista counts Schreiber as one of endocrine system. became so fatigued that she had to use mental medication. Today, that patient as she matter-of-factly displays her her favorite people at St. Jude. “She’s that’s where kids go to live.” “Most general a wheelchair and sleep about 15 hours is a size 12, and she feels great. Her Medic Alert bracelet and sings the so sweet and understanding, and she hospitals have a day, excluding naps. The Endocrine prom picture hangs in Schreiber’s praises of staff members in the St. Jude relates so well to me,” says Trista, who endocrinology staff discovered that the young woman office. Endocrine Clinic. “But I’m very fortu- also treasures her relationships with fever, for instance—she could die from departments, but they don’t follow had a growth hormone deficiency. Danish and Schreiber are involved nate. I’ve turned out pretty fair, consid- other staff members at the institution. absence of stress hormones. She always oncology patients exclusively; they Even though the patient was an adult, in several research projects that may ering.” What the self-effacing young “Even when I was a child and they keeps a supply of medication handy in may only have 2 to 3 percent of their she still needed the hormone to help future St. Jude patients. They have woman fails to mention is that she has were sticking me with needles, I loved case of emergency. patient population who have under- increase her energy levels and bone been heavily involved in a study sailed through high school with an A-B the people at St. Jude. As a child, I Randi Schreiber, physician assistant gone cancer treatment,” she says. I mineral density. “Now she’s active in involving cancer survivors and bone average. She is deeply involved at her always dreamed of working there.” in the St. Jude Endocrine Clinic, says don’t know of any other center besides her sorority, she has a long-term mineral density. Other projects still in church, and she was the top St. Jude The long-time patient is about to Trista’s problems are not unusual. Any St. Jude that specializes in endocrine- boyfriend, she’s involved in various the planning stages involve such topics fund-raiser at her school for six con- transform that dream into reality. Next St. Jude patient who has a brain oncology.” clubs at college, and she has become as osteoporosis in patients who have secutive years. fall, she plans to enroll in college at— tumor, brain tumor surgery, radiation Because Schreiber and her col- very successful as a productive member HIV; a search for methods to preserve “She has a normal life,” says David, naturally—the University of Tennessee, or chemotherapy is at risk for develop- leagues see so many patients who have of society,” reports Schreiber. fertility in patients who receive total who credits Schreiber and James Martin. “I don’t think I’ll ever be able ing an endocrine problem. The undergone cancer treatment, they are Another teenager was obese because body radiation; and a new treatment Magness, RN, of the Endocrine Clinic to repay St. Jude for what they’ve done endocrine staff are currently treating able to provide early diagnoses. In her hypothalamus had been damaged. method for chemotherapy-induced dia- for their ceaseless efforts on her behalf. for me,” Trista says, “but I’m going to about 900 patients, including many other institutions, endocrine problems “She was so depressed, because she betes. Each of these studies will pro- “When Trista would have problems, try. I’m going to be a St. Jude nurse.”

12 Promise Autumn 2002 Autumn 2002 Promise 13 Structural biologists at Structural biologists at St. Jude now St. Jude help save the have access to the world’s best tools lives of children by Tools for studying the atomic structure of uncovering information protein molecules. about the molecular To make huge discoveries in med- work of cells and serve as messengers of the ical research, scientists at St. Jude among cells. You may have as many bases of disease. The Children’s Research Hospital must as 100,000 different types of protein discoveries help think small. As a matter of fact, an molecules in your body. Each has its entire department is dedicated to own function. researchers create new studying the atomic structure of pro- Genes contain the blueprint for Trade teins. Now, that’s small. making proteins. A mutation in a drugs to fight those Why study proteins? Well, proteins gene can damage the protein it control almost all of the biological encodes. diseases. processes in the human body. Your “Most diseases occur when things BY ELIZABETH JANE WALKER muscles, skin, and hair are made of go wrong with proteins,” says proteins; these macromolecules are Stephen White, DPhil, chair of even responsible for your digestion. Structural Biology. “If you can under- Researchers in Stephen White’s laboratory recently collaborated with John Nitiss, PhD, Proteins speed up important chemical stand the structure of the protein, you of Molecular Pharmacology to complete the crystal structure of the enzyme tyrosine DNA phosphodiesterase, or TDP. Another view of this protein appears on page 17. reactions, fight infections, control the can understand what’s going wrong activity of genes, provide the frame- with it.”

White and his colleagues try to X-ray crystallography lection of spots, called a diffraction determine the size and shape of bio- As its name implies, X-ray crystal- pattern, contains information about logical molecules. By understanding lography is a technique that involves every atom in the crystal. Researchers the 3-dimensional structure, they gain shining X-ray beams through proteins then use computers to convert the insight into how the molecules func- that have been crystallized. In the pattern into elegant protein models. tion. White likes to compare structur- St. Jude protein production facility, a Researchers have access to sophis- al biology to working on and repair- scientist takes a drop of purified pro- ticated X-ray diffraction equipment at ing an automobile. “If you want to tein the size of a pencil point and St. Jude, but the process of creating understand how a car works, you mixes it with substances that encour- crystals and collecting data is fraught need first to take it apart,” he age crystals to grow. In a crystal, all with challenges. The procedures are explains. “Then, when you’ve under- of the molecules are aligned in exactly time-consuming and scientists at the stood the structure of the car you can the same way. The more perfect the hospital can use only one wavelength go in and figure out what’s wrong crystal, the better the information it of radiation for their experiments. But with it.” yields. This crystallization process can recently, St. Jude crystallographers Just as mechanics require specific take several days or several months to acquired regular access to a different tools to work on cars, St. Jude struc- complete. kind of radiation source—a synchro- tural biologists use specialized tech- Protein crystals are not hard like tron billed as the world’s brightest niques to determine the structure of the rock crystals children make for X-ray source. Data collection that would proteins, as well as DNA and RNA. science fairs from salt or sugar solu- The Advanced Photon Source take a day at St. Jude is The primary tools they use are called tions; instead, they are fragile struc- (APS) at Argonne National possible in minutes at X-ray crystallography and nuclear tures that resemble cubes of jelly. Laboratory in Illinois is 10,000 times Argonne National Laboratory’s Advanced magnetic resonance (NMR) spec- These soft crystals are frozen so that brighter than any other light source in Photon Source. St. Jude troscopy. Beginning this fall, St. Jude they can undergo irradiation. When the United States. St. Jude is part of belongs to a consortium structural biologists have access to the X-ray beams pass through a protein the Southeast Regional Collaborative that has built a beamline best such tools on the planet. crystal, the beams scatter and create a Access Team (SERCAT), a consortium at the Illinois facility, distinctive pattern of spots. This col- that has worked together to fund and which contains the world’s brightest X-ray source. 14 Promise Autumn 2002 Autumn 2002 Promise 15 spend. The facility is shaped like a the first half-dozen of its type in the large doughnut—so large that world, and the second or third one

SETH DIXON Memphis’ Liberty Bowl Memorial delivered in the U.S.,” says Kriwacki. Stadium could be dropped into the “This will be one awesome machine, middle of it. Inside the synchrotron, just incredible,” agrees White. electrons zip around at fantastic speeds. They bend. They accelerate. Then they generate the world’s Scientists saving lives strongest X-ray beam. Structural biologists at St. Jude help Data collection that would take a save the lives of children by uncover- day at St. Jude is possible in minutes ing information about the molecular at Argonne. “Two days at APS is like bases of disease. The discoveries help two months of data collection here,” researchers create new drugs to fight says Brenda Schulman, PhD, of those diseases. Structural Biology, who made her first White and his colleagues are solv- This is a surface trip to the St. Jude beamline in August. view of tyrosine ing structures of proteins for possible Scientists at APS can obtain higher- DNA phosphodi- drug design. First, White solves a resolution images and expand their esterase, an enzyme structure and obtains insight into the research by using multiple wave- also pictured on active site of an enzyme. He then lengths. “We have state-of-the-art page 15. works with chemists to design mole- equipment at St. Jude, but it’s impossi- cules that bind to the site and ultimate- ble to collect data using multiple ly inhibit disease. White collaborates wavelengths without synchrotron radi- Two 600-megahertz (MHz) spec- new era of NMR experiments that pre- with St. Jude Infectious Diseases facul- ation,” Schulman says. trometers resembling gigantic steel viously were simply inaccessible to ty and with chemists at the National thermos bottles are tucked away in a us,” Kriwacki says. Institutes of Health on these projects. specially designed facility in the Danny The 12-foot-tall magnet will be Kriwacki and his team are trying to NMR spectroscopy Thomas Research Center. The term lowered into a 6-foot pit that has been figure out what goes wrong when Scientists use NMR spectroscopy to “megahertz” indicates the speed at dug into the basement floor. Only one human proteins are mutated. Tumor determine the structure of proteins sus- which a proton spins in the magnetic spectrometer in the world is stronger. suppressor proteins provide a natural pended in liquids. Because the samples field. “The bigger the magnet, the bet- “The one we’re getting will be among defense against cancer by preventing are not immobilized the way crystals ter,” says Kriwacki. are, researchers can obtain informa- This fall, St. Jude will SETH DIXON tion about how the proteins move and install an 800-MHz instru- how they bind to other proteins. ment just down the hall “NMR is really the only technique for from the existing NMR studying dynamic biological molecules lab. The new spectrometer in a natural setting,” says Richard will be equipped with a Kriwacki, PhD, assistant member of cryoprobe, a device that Structural Biology. “So NMR comple- will greatly increase the ments crystallography in that way.” instrument’s sensitivity. To conduct an NMR experiment, “We will be amongst the scientists first prepare a high-concen- first four-to-six labs in the Stephen White, DPhil, and Hee-Won Park, PhD, don special goggles to study and manip- tration solution of protein. A world to have an 800-MHz ulate 3-D images of crystals. Working at another computer in the laboratory are Jie researcher pours the solution into a cryoprobe,” observes Jheng, PhD, and Tina Izard, PhD. Each of these researchers seeks to determine the size long glass tube and lowers it into a Kriwacki. and shape of biological molecules. By acquiring insight into how the molecules function, probe located at the center of an The ultra-sensitive spec- the structural biologists help save the lives of children around the world. extremely powerful magnet. The probe trometer will enable emits and collects radio signals at St. Jude researchers to varying frequencies. As the sample in study a wider range of bio- build a beamline at this facility. Photographers use bright light to the powerful magnetic field is excited molecules and to determine Construction of another SERCAT capture brilliant images on film. In the by the radio waves, the protein’s atom- the structure of smaller beamline will be completed next year. same way, St. Jude scientists can har- ic nuclei make detectable responses. proteins more efficiently Richard Kriwacki, PhD, currently uses 600-megahertz spectrometers like the one behind him Crystallographers from the Structural ness the brighter light at APS to obtain Scientists then use computers to deter- than ever before. “Having to figure out what goes wrong when human proteins mutate. He and his colleagues are Biology department will use these exquisitely detailed images in a frac- mine the protein’s structure based on the 800-MHz spectrometer awaiting delivery of an 800-MHz instrument equipped with an ultra-sensitive cryoprobe. beamlines to conduct their research. tion of the time they would normally the unique NMR spectrum created. will open the door to a St. Jude will be one of the first institutions in the world to have such an instrument.

16 Promise Autumn 2002 Autumn 2002 Promise 17 sion and the immune response. Schulman’s work may SETH DIXON help researchers understand the progression of birth defects and diseases such as Strings Attached cancer, Parkinson’s and AIDS. She is one of 20 U.S. It may look like a simple, colorful sewing project, but the tales scientists to be named a Pew Scholar in the Biomedical behind these squares weave the amazing story of St. Jude. Sciences this year. The presti- gious award will allow her to share ideas and collaborate with some of the brightest young researchers in the B Y T ANUJA C OLETTA country. LAURA HAJAR

Tools for tomorrow In 1996, the Structural Biology department was established to combine the Brenda Schulman, PhD, is excited to have regular access to a beamline at Argonne National disciplines of molecular biol- Laboratory’s Advanced Photon Source. At the new beamline, she and other St. Jude researchers can ogy, physics, mathematics obtain high-resolution images of protein crystals and expand their research by using multiple wave- and computer science. As a lengths. “We have state-of-the-art equipment at St. Jude, but it’s impossible to collect data using multiple wavelengths without synchrotron radiation,” Schulman says. St. Jude researchers began newcomer to St. Jude, White using the APS beamline in August. visited other departments, drumming up business. “I was knocking on people’s explanation for a type of cancer that doors saying, ‘What do you work on? occurs in Brazilian children. Kriwacki Do you have any proteins that you identified a defect in the structure of might want to know what the struc- one particular protein that made it fall ture is?’” apart under certain circumstances, Faculty answered with a resound- leading to the onset of adrenal cortical ing “Yes!” carcinoma. Today, Structural Biology “This is the first time that a partic- researchers collaborate with faculty in ular molecular defect has been associ- almost every area of the institution, ated so clearly with a single type of and they use the expertise and facilities cancer,” Kriwacki says. As a result of in the St. Jude Hartwell Center for the study, all children are being Bioinformatics and Biotechnology as Richard Kriwacki and his colleagues gener- screened in families that have the they determine their structures. The ated this image, which is the world’s first mutated protein. “If they catch it addition of a new NMR spectrometer molecular view of a complex called early, then the prognosis is very and access to the APS beamline will Arf/Hdm2. The researchers believe that when this complex forms in human cells, a good,” explains Kriwacki. accelerate the work that St. Jude struc- key tumor suppressor pathway is activated. Schulman is studying how proteins tural biologists can accomplish. become degraded in cells. After pro- “Technically,” says White, “there teins finish their work, they need to be will be no limit to what we can do. uncontrolled cell growth. But if the turned off or eliminated. For instance, There will be nobody else in the world proteins experience a mutation, their if proteins that replicate DNA remain who will be better off than us in terms function can change. after they have done their job, cells of the problems that we can tackle.” Patient Rodolfo Cáceres demonstrates Kriwacki recently worked with will have too much DNA, and cancer patience, concentration and creativity Raul Ribeiro, MD, of International will occur. Regulated protein degrada- as he fashions El Salvador’s flag and Outreach and Gerard Zambetti, PhD, tion plays an important role in the cell map on a quilt square. of Biochemistry to develop a genetic cycle, organ development, gene expres-

18 Promise Autumn 2002 Autumn 2002 Promise 19 LAURA HAJAR

It’s 10 a.m. on the dot, and Dana Each square lays bare a person’s soul, depicting “I knew how much side. It could also be why patient Marshall, PhD, already has her first that meant to peo- Rodolfo Cáceres’ mother sits patiently customer, 9-year-old Shaliea Mathis. feelings of gratitude, sorrow, faith or utter glee. ple and thought we for more than an hour helping him The spunky third-grader waits patient- could do something create the flag and map of their home- ly as Marshall cuts a square from a similar here,” she land, El Salvador. bolt of muslin and sets out the rain- explains. Marshall remembers most of the bow of puff paints, sequins, fuzzy balls Before long, other children peek can make a square there. When she’s Her instincts names and stories behind each quilt and magic markers. Shaliea pours out into the St. Jude cafeteria and make finished, she races to the cafeteria with were accurate; peo- square. Even the simplest square can her life’s story to Marshall as she their way to the table. They are joined her striped butterfly drawing. ple jumped at the be dramatic. Marshall is touched by a waits: Her 2-year-old brother is a by mothers and fathers, doctors and Each square lays bare a person’s chance to take part piece of white canvas with two hearts patient at St. Jude Children’s Research nurses. All of these people are making soul, depicting feelings of gratitude, in the project, mail- that reads, “Thanks. In loving memory Hospital; her family just moved to squares for the St. Jude Quilt of Hope. sorrow, faith or utter glee. As a whole, ing pieces from as of Chad D. Creech.” Survivor Tommy Memphis, and she cannot wait for the Bedazzled by the array of supplies, far away as Hackman, then age 16, wrote about first day of school. “I am ready,” she some children gaze at the spread with Switzerland and his square, “I made a friend at St. Jude declares. “Who wants to be sitting at the same look they might have in front New Zealand. One named Chad, and he didn’t make it so home all the time when you can be of a candy store—unsure which sup- year and hundreds this is in his memory.” learning something fun?” plies to choose. Others plop down in of quilt squares Shaliea begins deftly mixing paints chairs, grab fistfuls of markers and later, Marshall on a scrap of aluminum foil with a write messages that come straight from organized a sew-a- Q-Tip. Soon her blank canvas is hot their hearts: most often, “I love you, thon, sponsored by pink, bedecked with a glittering felt St. Jude.” Patient Emma Miller, 15, Hancock Fabrics, frog and a wolf made from grey fuzz sends a staffer to bring cloth and sup- to sew the patches 1 and google eyes. plies to the Medicine Room so that she into 4 ⁄2-foot-square panels. About two dozen volunteers stayed up more than 36 hours to Three employees from the Diagnostic complete the job. Imaging department chose a jaunty cat to Today, the pan- communicate their love for St. Jude els—65 and grow- patients. ing—are show- “Isn’t it grand…how mere pieces of cloth “Seeing the quilt makes you appreciate the human spirit,” says cased on a rotating sewn together have the power to lift the the tapestry tells the tale of unwaver- Dana Marshall, PhD. “It really shows you how strong people basis in a perma- human spirit?” muses Pennie Horras of ing determination displayed each day can be when they’re going through major adversity.” nent display in the Iowa. Horras says this square was inspired by the song “Send in the Clowns.” by the St. Jude staff, patients, volun- hospital. The teers and donors who share the goal of St. Jude Quilt of ridding the world of childhood cancer display. “I don’t want to be thanked,” Hope won’t yet cover the Tennessee and other catastrophic diseases. she says. “I think I’m pretty lucky to Titan’s football field, but it has grown “Seeing the quilt makes you appre- be a part of this project.” far beyond Marshall’s dreams. “One of ciate the human spirit,” says Marshall. She says the quilt idea originated my friends who’s a nurse said it best,” “It really shows you how strong peo- from a selfish motivation. “When I Marshall says. “People want others to ple can be when they’re going through came to work here I knew this was a know that their children made a differ- major adversity.” special place,” she says. “Even though ence. This is one way to tell their sto- I am in basic science and I know my ries.” work does ultimately help our chil- Perhaps that is why a weary A quilt is born dren, I wanted to do something that Deborah Wells is taking a quick break Marshall is too humble to take would give me a chance to experience from a 24-hour vigil at her daughter’s credit for the quilt project she began the kids—to see why we are here doing bedside to make a square. With simple three years ago. Section leader for the what we do.” pastel markers she writes baby Nicole’s This quilt square was created by the fami- Clinical Application Core Technology The countless hours she spends name and birth date and places an ly of Brian Michael Bush, in memory of Lab in the Hartwell Center for after work and on the weekends prove angel with glittering feathers above it. the St. Jude patient. Brian was heavily Bioinformatics and Biotechnology and that pure dedication rather than self- “She’s a good girl, and we want her to involved in charity work until his death in St. Jude patient Jessica Turri made this square when she was 11. The young seamstress formerly an Immunology researcher, ishness drives Marshall, who was be well for her next birthday,” she 1989. The miniature golf tournament depicted some of her friends standing on a gray road near the gleaming dome of the Marshall still bristles at seeing her inspired by the AIDS Memorial Quilt. says, before dashing back to Nicole’s depicted in the square continues Brian’s Danny Thomas/ALSAC Pavilion. “My dad let me use his pants for the road,” recalls work: the Michigan event has raised more Turri, who is now 14 years old. name in lights on the hospital’s quilt than $225,000 for St. Jude. 20 Promise Autumn 2002 Autumn 2002 Promise 21 “I love that one for so many rea- Arkansas, Lynch is that you go through,” agrees Henry. Hope, the next best thing is looking at coffee table book with proceeds bene- sons,” says Marshall. “First, when you “People want others to know that their one of Marshall’s “Sometimes something as simple as sit- the squares on the St. Jude Internet fiting St. Jude. can get a 16-year-old boy to use the children made a difference. This is one longtime volun- ting down to make a square can heal site. Visit the quilt site at “The outpouring of enthusiasm word “love” on anything, that’s special teers. you.” Henry has added a handful of http://www.stjude.org/quiltofhope/. for this project really speaks to this right there! But the fact that it’s so way to tell their stories.” Lynch is a squares to the quilt, including the With a click of the mouse, viewers can institution and the people who come simple, from a patient to a patient, is favorite at the reg- grooving Cajun crocodile for a patient look at the 400 or so patches and read here,” says Marshall. “That’s what what gets me. That’s all that had to be ular quilt square from Louisiana and a whimsical skele- the stories behind them. it’s all about.” making days and ton—probably the most unusual and “I love the fact that anyone with a never says “no” to a child no matter most difficult figure Lynch cut that computer can now see these and be how difficult the animal is she’s asked day—to honor the Diagnostic Imaging touched by them,” says Marshall. “It’s to cut. “Seeing a kid smile is worth it,” department. a way for patients and families and all she explains. Most recently, Lynch ful- of those touched by St. Jude to share filled wishes for galloping “horsies,” our faith and encouragement.” majestically leaping dolphins and an Surfing the quilt Marshall’s work is far from over. accordion-playing crocodile. While nothing beats a trip to the In the future, she’d like to start a proj- The Quilt of Hope is a celebration hospital to see the St. Jude Quilt of ect to capture the quilt squares in a of life, but it is also a tribute to those who showed great courage before their untimely deaths. Ruth Williams, RD, EdD, director of Clinical Nutrition How to make a Services, and Pamela Henry, CT tech- nologist in Diagnostic Imaging, have square for the made squares for children who lost This self-portrait of a young girl with bal- their battles with cancer, including one loons was created by 3-year-old patient who died September 11, 2001. St. Jude Quilt of Hope Megan Thompson of Kentucky and her “It was really difficult for us, and mom. we couldn’t even travel to the memori- al service because the planes were grounded because of the World Trade Design your square Center tragedy,” says a teary-eyed Williams. “This is one of those things The theme of each square must involve St. Jude. that helps you get your feelings out and get through it. It helps keep their Ensure that your square meets size specifications Tommy Hackman, then age 16, fashioned this simple square to honor the mem- memory alive long after they’ve gone.” ory of a friend and fellow patient. “I made a friend at St. Jude named Chad, Squares should be either 1-foot square or 2-feet square. Leave 2 to 3 and he didn’t make it so this is in his memory,” wrote Hackman. “The fact that “There is a whole grieving process inches of material per side outside the finished square for sewers to use it’s so simple, from a patient to a patient, is what gets me,” says Dana Marshall about the square. “That’s the family feeling I see all the time at St. Jude; that’s in assembling the squares into a quilt. what this project is all about.” The quilt is intended to serve as a lasting memorial, so use durable fab- rics and materials. Baste (sew) or tape the edges of your square so that it does not fray. Quilt makers will sew the squares together with a bor- der and backing so you do not need to affix fabric backing. St. Jude nurse Margaret Edwards created said. That’s the family feeling I see all this square to spotlight the “Happy Cart,” Six-year-old Lisa Write an accompanying letter in which volunteers bring craft packets to the time at St. Jude; that’s what this Maria Nelson of St. Jude patients. project is all about.” Japan created this Please send us a brief letter explaining the thoughts and experiences that whimsical illustra- inspired your square. Include your name, address, phone number and tion. At St. Jude e-mail address (if applicable). Dolphins and horsies the talented young artist underwent Alice Lynch is called to duty the treatment for Mail your package moment she arrives at the cafeteria. retinoblastoma, a The professional quilter has a knack malignant tumor Wrap your square in a plastic bag before mailing to decrease the chance for cutting felt into animal shapes. A of the eyes. of damage through the mail. Send squares to the St. Jude Quilt of Hope, few quick snips, and—voilá!—it’s a St. Jude Children’s Research Hospital, 332 North Lauderdale Street, frog or a dragonfly or a puppy. A Memphis, TN 38105. Navy veteran who resides in

22 Promise Autumn 2002 Autumn 2002 Promise 23 Perspective

FedEx helps St. Jude save lives through SETH DIXON the FedEx St. Jude Classic

By Frederick W. Smith

“The original name of the event was the Danny Thomas Open, and Danny told me personally that he was very pleased when FedEx assumed sponsorship.”

$11.6 million for St. Jude. But our dance. And droves of golf fans unable commitment to the FedEx St. Jude to make it to Memphis tuned in to Classic goes beyond just financial ESPN and ABC to watch the national support. television coverage. All of this national Close to 400 FedEx employees exposure also publicizes the life-saving spend vacation days volunteering as work of St. Jude and provides a boost caddies, hospitality stewards, standard of more than $15 million to our local Frederick W. Smith bearers, Pro-Am assistants and more to economy. help make the tournament a success. It’s probably not difficult to under- There’s no way to put a price tag on stand why FedEx recently announced our employees’ time, talent and enthu- we are extending our title sponsorship Memphis is a wonderful city with siasm, but such contributions are just of the tournament through 2006. many impressive treasures. One of as crucial as financial support to the To thousands of golf fans coming to those is St. Jude Children’s Research tournament’s success. Memphis to see top-tier PGA competi- Hospital. As the largest employer in Certainly, the passion and compas- tion, the FedEx St. Jude Classic cer- the area, FedEx has an obligation to sion the great Danny Thomas brought tainly delivers. And to thousands of They wear kimonos, kilts and khaki and speak many different lan- help Memphis acquire and showcase to the founding of St. Jude 40 years families who come to Memphis guages. But members of the St. Jude community are united by a com- mon mission. In July, hundreds of people gathered in the Danny its treasures to the world. No venue ago is alive and well in our employee hoping for a miracle, St. Jude delivers Thomas Research Center atrium to unveil 88 new international flags, affords us that opportunity more com- and community support of the FedEx with more regularity than any other which celebrate the diversity of nationalities at St. Jude. The St. Jude pletely than the FedEx St. Jude Classic. St Jude Classic. The original name of childhood cancer research center in Women’s Club spearheaded the project by offering employees, volun- This event combines two genuine the event was the Danny Thomas the world. teers, visitors and patient families the opportunity to help sponsor Memphis gems—St. Jude Children’s Open, and Danny told me personally banners representing their countries. Research Hospital and one of the old- that he was very pleased when FedEx est stops on the PGA tour—to create a assumed sponsorship. Frederick W. Smith is chair, president rare sponsorship opportunity. This year, some 150,000 spectators and chief executive officer of FedEx FedEx has been the proud title witnessed a field of 156 professional Corporation, a $20 billion global sponsor of this classic event for 17 golfers compete for a purse of $3.8 transportation and logistics holding consecutive years. In that time, the million. Out-of-town visitors account- company. He is also co-chair of the tournament has raised more than ed for 35 percent of that total atten- St. Jude Professional Advisory Board.

24 Promise Autumn 2002