PromiseSummer 2007

A Tall Order Page 8 Features

4 A Beautiful Life A publication of St. Jude Children’s Research Hospital Summer 2007 Matching gifts, saving lives Promise 5 A Marriage of Generosity and Vision Parviz and Susan Tayebati

6 Timing is Everything The hospital’s newest affiliate clinic

8 A Tall Order Tiny girl, huge miracle

12 Brave Heart Battling the enemy within

15 Germ Warfare St. Jude infection control 15 18 Gold in Those Hills Harnessing the human genome

21 Life Coach Overcoming osteosarcoma

Highlights 21

2 News and Achievements Perspective

24 Jaime Pressly It’s All About the Children 18 6

Hospital Director and ALSAC Vice President Photo Editor Contributing Writers Marc Kusinitz, PhD Public Information: St. Jude is an Equal Opportunity Employer. Promise Chief Executive Officer of Communications Jere Parobek Summer Freeman Jon McCullers, MD 1-866-2STJUDE (278-5833), For inquiries about stories in this pub- is a quarterly publication of the William E. Evans, PharmD George Shadroui Ruth Ann Hensley Ava Middleton ext. 3306 lication, call (901) 495-2125 or e-mail Department of Public Relations Photographers Lynda Nance Joseph Opferman, PhD [email protected]. Articles and ALSAC Chief Executive Officer St. Jude Children’s Research Hospital Director of Public Relations Peter Barta Carrie L. Strehlau Carlos Rodriguez-Galindo, MD photos may be reprinted with permission. John P. Moses Donations: 1-800-822-6344 Judith W. Black Seth Dixon Betsy Taylor Carrie L. Strehlau ©2007. 332 N. Lauderdale St. Visit our Web site at www.stjude.org. Memphis, Tennessee 38105 Jeffrey Hanshaw Lois Young Penny Tramontozzi ALSAC/St. Jude Publications Manager Ann-Margaret Hedges Regina Watson On the cover: St. Jude patient Brooklyn Chief Communications Officer and Editor Editorial Advisory Board St. Jude Children’s Research Hospital, St. Jude Children’s Research Hospital’s mission is to advance and Senior Vice President Sally Wiard Graves-Bingle. Story on page 8; photo by Elizabeth Jane Walker Guest Author Lisa Baker American Lebanese Syrian Associated cures, and means of prevention, for pediatric catastrophic John Zacher Peter Barta. Ken Ferber Jaime Pressly Leslie Davidson Charities and ALSAC are registered diseases through research and treatment. Consistent with the Art Director Steve Zatechka, PhD trademarks. Mark Hendricks vision of our founder, Danny Thomas, no child is denied treat- Jessica W. Anderson Christine Kirk ment based on race, religion or a family’s ability to pay. l

reenslade G Summer 2007 / Promise  The EMBO Journal. may go down one color, Things No One One No Things About You Tells Cancer Pediatric Treatment ® atherine C y but it comes up an entirely different color. “W Y diagnosis day. Y treatment. Y waiting for that first post-treatment check-up. Y anything that involves something other than blood your counts child’s and appointments. F you’re lucky enough to be hungry. Insomnia No those Consider dark them circles. a fashion statement. Ga will become an expert. Y beyond her often years, wiser than you will ever be. our child will become mature far B

ou will age 10 years in one day— ou will age another 10 years during ou will age yet another 10 years ou will not be able to remember rozen dinners taste really if good, amount of concealer will hide becomes a way of life. torade is aiting” an art form in which you The researchers demonstrated that gene Brca2 plays a dual role in the 9. 1. 2. 3. 4. 5. 6. 7. 8. 10. Catherine Greenslade is the mother of Emily Miller a Land, survivor of the bone cancer visit story, read Emily’s To osteosarcoma. and www.stjude.org/news “Promise click on story Emily’s Magazine.” appeared in the winter 2005 page edition, 22. how certain genes known to prevent cancer also guide the nervous system’s development before birth and during infancy by damage. repairing DNA the developing nervous system, eliminating errors in of the newly DNA made copies of chromosomes and suppressing the onset of the brain cancer medulloblastoma. Peter McKinnon, PhD, of Genetics and Cell Tumor Biology is senior author of a report on this work in the May 3, 2007, online issue of the 10 Blood. Journal Journal of Clinical St. Jude investigators have gained St. Jude investigators had a Using a technique developed for this St. Jude investigators have discovered Mary Relling, PharmD, chair of Nature Cell Nature Biology, May 2007. The Repair of DNA by Brca2 some of the first major insights into Seeing double Seeing eye view molecule’s of the human cell’s repair kit DNA as it assembled on a double-strand break to link together the broken ends. Double-strand breaks are ruptures that cut completely across the twisted, ladder-like structure of DNA, breaking it into two pieces. project, the researchers determined when repair proteins arrived at or around the report on A this break. work DNA appears in findings are important because disruption of the precise movement of these repair proteins can cause mutations, cell death or and cancer, the ability to track the process closely will give researchers critical insights into what can go wrong with Michael Kastan, repair. MD, DNA PhD, St. Jude Cancer Center is director, the paper’s senior author. inheritance Toxic inherited variations in certain genes that make children with acute lymphoblastic leukemia (ALL) susceptible to the toxic side effects caused by chemotherapy medications. The researchers showed that these variations occur in specific genes known to influence how drugs work in the body and how much drug is needed to have its intended The effect. findings are important because side effects in can ALL be life threatening and interrupt delivery of treatment, increasing the risk of relapse. New insights gained in this study could ALL help individualize chemotherapy according to a patient’s inherited tendencies to develop toxic reactions to specific drugs. Pharmaceutical Sciences, is senior author of a report on this work published in the May 15, 2007, issue of the April 20 the issue of . Oncology Sue Kaste, DO, of Radiological Sciences is the paper’s senior author. in humans. St. Jude investigators say they have The investigators found that if more report on A this work appears in Parents Parents might one day give their report on A this study appears in the St. Jude has been designated one of The goal of the centers is to help years. Intensive use of corticosteroid Predicting decay found the best way for predicting when patients will need future surgery to repair hip joints that have deteriorated because of pediatric leukemia or lymphoma treatment. than 30 percent of the head of the bone fitting into the hip socket is deteriorated, it is at high risk of collapsing and requiring reconstructive surgery within two drugs has been implicated in development of bone deterioration. these However, drugs have helped raise survival rates of children with pediatric leukemia and lymphoma, and currently there is no adequate substitute for their use. Enzyme recruitment Enzyme children a weekly treatment with a nasal spray of virus enzymes to prevent them from getting severe middle ear infections, based on results of a study done by investigators from St. Jude and The Such Rockefeller University in York. New a treatment would kill the disease-causing bacteria without the use of antibiotics, thereby avoiding the problem of antibiotic resistance. March 2007 issue of the online journal PLoS Pathogens. Jonathan McCullers, MD, of Infectious Diseases is the paper’s first author. Excellent center six Centers of Excellence for Influenza Research and Surveillance funded by the National Allergy Institute and of Infectious Diseases (NIAID), a part of the National Institutes of Health. Robert PhD, of Infectious Diseases Webster, is principal investigator for the program at St. Jude. the federal government prepare for and respond to seasonal influenza as well as outbreaks of animal influenza that might cause pandemics, or worldwide epidemics,

PETER BARTA Award ® (JAMA) in March of 2007. Results from the longest follow- report on A this work appeared Journal of the American Medical Learning from survivors up study ever done of childhood acute lymphoblastic leukemia (ALL) survivors show the importance of long- term monitoring of former patients to identify complications they are at risk for developing later in life and to modify current treatments to reduce those risks. in Association Nobuko Hijiya, MD, of Oncology is the first and article’s corresponding author. international groups that meet online,” Quintana, PhD, of International Yuri said Outreach. “The content has been accessed more than 1 million times.” The Journal of Web site Web Cure4Kids ranked pop-tropical singer Fanny Lu and Jade Alexander of CBS4 News in Miami. ® The St. Jude The site offers a on- digital library, “Cure4Kids now contains 900 Web site brings the Web latest Cure4Kids Cure4Kids milestone now has more than 10,000 users from 155 countries. Established in 2002 as a part of the International Outreach Program, the medical knowledge on the treatment of pediatric catastrophic diseases to health care providers in countries with limited resources. demand seminars with slides and audio in several languages, and other resources. seminars, 25 online courses, 20 international conferences and 120 the April 2007 the issue of Clinical Investigation.

Award winner pop José singer Feliciano, and multi-platinum recording artist Cristian Grammy Castro, ®

St. Jude researchers showed that Dario Campana, MD, PhD, of The cancer drug asparaginase H i g h l i g h t s Patient Patient Stephan Boehme meets television supermodel, personality and Jude St. supporter Daisy Fuentes during the fifth annual FedEx/ Jude St. Angels & Stars Gala The in Florida. evening Miami, was raised joined $300,000 by the celebrity Fuentes, for legendaryevent’s Jude. chair, St. and singer-songwriter Grammy winning Cuban singer and 1 composer No. Billboard Albita, fails to help cure some children with acute lymphoblastic leukemia because molecules released by certain cells in the bone marrow counteract the effect of that drug. specific cells in the bone marrow create a protective niche for leukemic cells by releasing large amounts of asparagine, an amino acid that nearby leukemic cells must have to survive but do not make This extra supply of efficiently. asparagine helps leukemic cells survive treatment with the drug asparaginase. Oncology and Pathology is senior author of a report on this study that appears in Leukemic cells’ safe haven  Promise / Summer 2007 Doug and Mary Calvert double their donations to St. Jude through the hospital’s matching gifts program. A Marriage of A Beautiful By Lynda Nance Generosity and donors since 1977. They were drawn to

PETER BARTA the hospital because of Danny Thomas’ By Lynda Nance promise that no child would ever be Vision turned away due to a family’s inability to pay. Though they never had children of their own, the couple wanted to do By Betsy Taylor something specifically for children. i St. Jude was a natural choice. LLifefe In 1990, when Doug started working for General Electric, the couple’s donations continued, but Doug also signed up for the GE Foundation’s matching gifts program. For each dollar One couple funnels shared energy and resources into saving the lives of children. the couple gives to St. Jude, GE pitches in another dollar. Joining the matching gifts program enables the couple to double their Great couples achieve more together than they may have They have concentrated their formidable energy and St. Jude giving. And the Calverts aren’t done separately. Parviz Tayebati, PhD, and his wife, Susan, resources to funding children’s causes through the Tayebati the only ones at GE making St. Jude of Weston, Massachusetts, are one couple whose interests Family Foundation, which they diligently administer. donations. Kathleen Mayglothling, and impressive accomplishments converge to serve a Susan and Parviz are also devoted parents to their beloved a program manager with the GE greater purpose. 2-year-old son. Foundation, says that since 2005 the Married in 2002, Parviz and Susan were introduced by The couple knew they wanted to give to St. Jude foundation has matched approximately friends, and as luck would have it, they clicked. “I think Children’s Research Hospital when they learned that no $325,000 in gifts to St. Jude by the timing was just really right for us,” Susan says. “We child is ever turned away because of the family’s inability employees and retirees of GE. were both at a point in our lives where we were ready to to pay. They also recognized how important it is that The Calverts have another, settle down.” It was clear to those who knew them that St. Jude pursues the development of revolutionary vaccines bittersweet reason for donating to they shared the same fundamental philosophies on life and and drugs focused exclusively on saving children’s lives. St. Jude. In 1992, Mary became ill had similar senses of humor. “These two items really impressed me,” Parviz says. with a rare neurological disorder that With a master’s degree in theoretical physics and a Their $1 million commitment to the hospital supports causes muscle rigidity and a heightened doctorate in quantum electronics, Parvis has a genius for the work of the Chemical Biology and Therapeutics sensitivity to stimuli such as noise and turning concepts into practical realities for the benefit of department, which speeds science discoveries into touch, which can set off muscle spasms. many. He saw the promise of fiber optics when few did treatments and cures for children who suffer from “We loved to horseback ride,” she and helped expand its applications to include everything catastrophic diseases. says. “But after I became sick, we had from telecommunications to defense. He belongs to “I appreciate that the research done at St. Jude is not to stop.” She pauses. “That’s really the numerous professional societies, has published scores of separate from the clinical practice; it’s intertwined,” Parviz live with white violets and “We’ve lived here our whole lives,” main reason we give. I had 42 healthy scientific papers and has 25 patents and patents pending says. “The researchers apply their discoveries to actual bergamot flowers, Dawson Springs Mary explains. years; I know what it’s like to be healthy. for fiber optic communications devices and subsystems. patients right away, in real time.” Ain western Kentucky is a beautiful place. It is clear that once they dedicate St. Jude is a worthy cause because these Susan’s life choices reveal a desire to understand The couple’s generosity and vision will have a real It’s easy to understand why Doug and themselves to something, the Calverts kids need all the help they can get.” human systems and a commitment to improve them. She and lasting effect, helping to save the lives of children Mary Calvert chose to make their life stick with it. This is true not only about received a bachelor’s degree in economics and sociology from all walks of life for years to come. here after they married in 1965. The their hometown, but also their favorite For more information about matching from the University of Massachusetts in Amherst and is To learn about making a gift to St. Jude or other couple has known each other from the charity. To date, the Calverts have gifts, please visit www.stjude.org/ currently at work obtaining a graduate degree in speech planned giving opportunities, call Gift Planning at time they were children. Doug was born donated a total of $38,060 to St. Jude matchinggifts. l language pathology at Emerson College in Boston. (800) 395-1087 or e-mail [email protected]. l less than four miles away, in the heartland Children’s Research Hospital. of the state. The Calverts have been St. Jude

 Promise / Summer 2007 Summer 2007 / Promise  Thinking about when she was first told she has As fate would have it, St. Jude had just opened a new birth to twins (a boy and girl) in early September. “I couldn’t Hodgkin disease, Rhondalyn Aklin (at right) says, “I affiliate clinic at Huntsville Hospital for Women and Children. have written it any better,” Ferrante told The Huntsville Times didn’t know much about cancer at that time. But I The clinic doctor sent Rhondalyn to St. Jude in Memphis for newspaper. prayed about it, and I’m not scared right now.” her initial work-up and first chemotherapy treatment. But The hospital’s administrators worked with Ferrante to select Timing is thanks to the new clinic, she receives most of her treatments the clinic staff, and “the Domestic Affiliate team trained them the close to home. St. Jude way,” Burleson says. Ferrante took the lead with further education once she came on board. Huntsville Hospital’s Vice Idea sparks destiny President of Women’s and Children’s Services Paula W. Lucus Everything Before the Huntsville affiliate opened, St. Jude already had and Director of Children’s Services Cathy Hubler also played affiliate clinics in Johnson City, Tennessee; Peoria, Illinois; and crucial roles in establishing the program. By Lois M. Young Baton Rouge and Shreveport, Louisiana. All clinic staff members and some inpatient nurses from the “The main purpose for having affiliate clinics is to allow hospital traveled to St. Jude in Memphis for training. Several patients to receive most of their care near home,” explains Cindy St. Jude staff went to Huntsville to help with the clinic’s training Burleson, St. Jude Domestic Affiliate director. The arrangement and set-up needs. benefits St. Jude by increasing the number of patients who enroll in the hospital’s research protocols, or scientific treatment plans. Patients reap benefits Because some affiliate patients can go home between treatments, St. Jude covers the cost of all co-pays, deductibles and it frees up housing space and travel funds for patients who need outside professional services for affiliate patients. Huntsville to come to Memphis. St. Jude and the affiliates share the cost of Hospital covers services at Huntsville Hospital for Women and clinic staff salaries, leased space, supplies and start-up costs. Children that are not paid by insurance. Of course, if patients In 2005, a Huntsville emergency room doctor read about must travel to Memphis for part or all of their care, St. Jude pays the affiliates and thought, “Why can’t Huntsville do the same for that care, as well as for travel, housing and food. thing?” His interest led to a conference call between Huntsville Although Rhondalyn receives most of her treatments Hospital and St. Jude leaders. About a year later, the institutions in Huntsville, she travels to Memphis every four weeks for announced the addition of a St. Jude affiliate clinic in Huntsville. advanced testing and one chemotherapy treatment. “We are very, very selective about where we open clinics,” “You pray about things and try to leave it in God’s hands,” said St. Jude Director and CEO William Evans, PharmD. “When Gwendolyn says, “But I have to say how much I appreciate what we met the leadership and clinical staff at Huntsville Hospital for the people at St. Jude do, both in Huntsville and in Memphis. Women and Children, we knew that we had found a partner that Rhondalyn’s treatment is right on track, and they make you feel shared our mission and values.” like you are connected—part of a family. They never leave you New St. Jude affiliate clinic wondering what is going to happen next.” After completing all Building on fate her chemotherapy treatments, Rhondalyn will return to Memphis St. Jude and Huntsville Hospital for Women and Children for several weeks of specialized radiation therapy. brings care and comfort to found the ideal clinic director in Lucille Ferrante, MD. She had worked in Huntsville as a pediatrician before becoming a Destined to succeed patients in Alabama. pediatric hematology-oncology fellow at the Medical University At the three-month mark, the Huntsville affiliate clinic of South Carolina in Charleston. Ferrante was excited about the was already caring for 28 new hematology patients and nine PHOTOS BY JEFFREY HANSHAW, HUNTSVILLE HOSPITAL prospect of returning to Huntsville. She finished her fellowship new oncology patients. In addition, Huntsville had referred 13 n February 2007, 16-year-old Rhondalyn Aklin was active on her in July, accepted the St. Jude Clinic position in August and gave patients to St. Jude in Memphis. school step team, training to be a certified nursing assistant and “Having the children treated closer to home is better for looking forward to working so she could save money for a car—a the child, better for the family and can aid in better treatment vintage Ford Mustang. Then she noticed that one of her lymph outcomes,” says Joseph Mirro, MD, St. Jude chief medical nodes was swollen, and a doctor removed the growth. “They told officer and medical director for the affiliate clinics. usI it was Hodgkin disease,” Rhondalyn recalls. “We really see the affiliate program as a win-win situation It turns out that one of her classmates at a small private school for everyone involved,” Burleson says, “and the biggest winners in Huntsville, Alabama, is a patient at St. Jude Children’s Research are the patients and families.” Hospital. The Acklin family agrees. Rhondalyn looks forward to the Rhondalyn’s dad, Ronald, remembers, “I went to the mother of the day when she can go back to school, join her friends on the St. Jude patient and tried to find information that might help us.” step team and work hard for her dream car—but until then, she “They told us how much they appreciated St. Jude and what good will be able to fight most of her cancer battle close to home care their son was receiving,” says Rhondalyn’s mom, Gwendolyn. surrounded by family and friends. l “After talking with the other student and praying with him, Rhondalyn felt that St. Jude was where she needed to go.”

 Promise / Summer 2007 Summer 2007 / Promise  PHOTOS BY PETER BARTAPETER BY PHOTOS

St. Jude researchers craft a special blend of treatment to conquer a rare bone disease. OrderA Tall By Elizabeth Jane Walker

The guttural hiss of a cappuccino tights, a pink mini skirt and a black-and- Research Hospital. With help from his machine, the low murmur of conversation white striped shirt. Depending on her former colleagues, Kanwar identified the and the pulse of ambient music muffle the mood, she might pair that ensemble with problem and called Danie. tiny voice that emanates from beyond the pirate boots or a tutu and ballet slippers. “Brooklyn has a disease called cash register. Perplexed, a barista leans It’s hard to believe that only a few malignant infantile osteopetrosis,” he said. over the counter and peers down. Smiling years ago, this delightful child was given “Don’t go look it up on the Internet; wait up is a delicate, 3-year-old girl with milky a 100 percent chance of dying by age 10. until you come in and talk to me.” His skin and beribboned pigtails. Sitting at a café table with her beautiful warning disappeared like smoke as Danie In a voice that retains the innocence daughter, Danie swallows a memory of hung up the phone and logged onto the of babyhood, the child repeats her request. that day that’s as pungent as the darkest Web. Fingers flying across the keyboard, “My mommy would like a grande espresso. she pulled up page after page of dire nonfat marble mocha macchiato, and I predictions. T Trouble brewing would like her whipped cream,” says “I burst into tears,” she recalls. Brooklyn Graves-Bingle. Soon after Brooklyn was born in “The Internet said that Brooklyn would Brooklyn’s cherubic sophistication July of 2003, Danie and Jed became probably not live to be 1 year old. She elicits a proud grin from her mom, Danie. increasingly concerned by their daughter’s would be blind, deaf and have painful “I know adults who can’t even order that failure to gain weight, her constant ear deformities of the bone.” drink,” Danie says. infections and jerky eye movements. Danie and Brooklyn nearly always When two lumps arose in Brooklyn’s Island of hope drop by the nearest coffeehouse when they abdomen, the infant underwent a battery When Danie and Jed met with go shopping near their home in central of tests for leukemia, anemia and a host Kanwar, he referred them to St. Jude. Washington. The irrepressible “fashion of other diseases. Finally, the family Upon arrival in Memphis, the family diva” even names the outfits she acquires consulted Vikramjit Kanwar, MD, an met with Kimberly Kasow, DO, of on those outings. For instance, Brooklyn’s Oregon hematologist-oncologist who had St. Jude Bone Marrow Transplantation. “punk outfit” consists of black, footless undergone training at St. Jude Children’s She explained that malignant infantile

 Promise / Summer 2007 Summer 2007 / Promise  osteopetrosis is an inherited bone disorder Kasow knew that if they took the time to Transplant and epiphany could engraft and create a new, healthy focus on getting Brooklyn better without steps. You watch the kids grow, and you in which cells called osteoclasts fail to find a donor through the National Marrow The happy news arrived just in immune system. Brooklyn underwent worrying that we would owe $3 million watch them do so well and it just touches do their job. In healthy bone, osteoblasts Donor Program, her disease could time. At her first birthday, Brooklyn was eight days of high-dose chemotherapy to in medical bills. It was much more than a your heart.” constantly make new bone and osteoclasts progress too far. But there was another the size of a 6-month-old. “She wasn’t achieve this goal. Meanwhile, Danie was relief—it was huge.” Kasow says the future looks bright break down and dispose of old bone. In option. St. Jude had pioneered a process walking or talking,” Danie recalls. “She taking a drug to stimulate her own body for Brooklyn. this extremely rare disease, bone cells through which some parents could donate would sit hunched over, and she wouldn’t to create stem cells. The drug made Danie Sunbeams and silver kisses “Her mom’s blood-making cells took continue to accumulate, which means that blood stem cells for their children. Jed reach for any toys. She didn’t play or intensely sick. Brooklyn sailed through the hold and grew, and Brooklyn’s blood- the bones cannot accommodate healthy and Danie underwent testing and waited know how to interact. She would just sit “I would compare it to an absolutely transplant process with few problems. making cells are now 100 percent her bone marrow and nerves. for an answer. and stare at you, and that was it.” crippling case of arthritis,” she recalls. Instead of the expected 100-day inpatient mom’s,” Kasow says. “Brooklyn’s bone “It’s a very rare disease,” Kasow told “I don’t think I have ever seen “Kids with this disease just don’t “It makes your bones feel like they are stay, she was hospitalized only 32 days. marrow has actually remodeled. Before them. “If about 4 million kids are born in doctors dance into a room,” says Danie, feel well,” Kasow explains. “Their body going to explode. I was downstairs taking The toddler began noticing shiny silver the transplant, it was very fibrotic. We the U.S. each year, you may be talking but Dr. Kim quite literally frolicked into does not make red blood cells, so they the G-CSF shots and morphine because it balloons in one area of the hospital. She took pictures of her bone marrow a year about 20 who are born with it.” the examination room to tell us that I was are anemic and feel tired. Their liver and made me hurt so much. Brooklyn was on insisted that her mommy pause by each after transplant. The pathologist called Most children with osteopetrosis die a nearly perfect match. It’s surreal to think spleen take up extra space and cause belly morphine too, because she was so sick. one so that she could kiss her reflection. me and said, ‘If I did not know this was because of infections prompted by bone that we were quite giddy and excited to pain. They can’t sleep well because of And Jed was constantly running between Before Brooklyn’s transplant, her an osteopetrosis child, I would have said marrow failure. As osteoblasts make more hear words that no parent should ever obstructive sleep apnea caused by having the two of us trying to keep up. It was St. Jude speech therapist had taught that this was a normal bone marrow.’ She bone, the bone marrow becomes fibrous have to hear.” small jaws and small chest walls.” pretty dreadful.” her sign language. But now Brooklyn has come a long way and is an inspiration and cannot make new cells. The couple Although they were ecstatic about the Brooklyn’s treatment at St. Jude Until that time, Danie had been began to speak. She chattered and to other families who have children with learned that their daughter’s bones were news, Danie and Jed understood the risks demanded the talents and expertise of trying to maintain her career in the hotel laughed and played with abandon. When infantile osteopetrosis.” 32 times more dense than those of a all too well. a massive team of people including industry. Jed was a new college graduate strangers quizzed her about the origin of Today, Jed is a civil engineer normal child her age. “A transplant is a treatment that speech therapists to help with language who had not yet entered the workforce. her beautiful curls, she replied, “From and Danie works in the health care Exhausted and overwhelmed, Jed could kill her,” Danie says. “We had a skills; ophthalmologists to treat her The family desperately needed income chemo.” field—a career change that was a natural and Danie struggled to understand the choice. We could keep her at home and vision problems; audiologists to evaluate and health insurance. Danie was frazzled Danie and Jed laugh fondly at their outgrowth of her time at St. Jude. “I cascade of words that flowed around let her die slowly, or we could give her hearing loss; technicians to process the and stressed and overwhelmed. One daughter’s exuberance and imagination. started working in the health care field them. But amid this tumult of information, a chance with the transplant. If she had cells; dieticians to optimize her nutrition; day during chemotherapy, she sat by For instance, Brooklyn has three small toy because I needed to do something that one island of hope emerged: the words the transplant, one of two things could physicians who specialize in treating sleep Brooklyn’s bed watching her sleep. Tiny ponies. The pink one is named Sunbeam; meant something at the end of the day,” “possible cure through a transplant.” happen: She could live, or her life could apnea; physical therapists to help her gain fingers curved against the plump peach of the yellow one is Platelet. The white one’s she explains. have meant something and could benefit mobility; and researchers to study the Brooklyn’s cheek; a translucent pulse beat moniker is Box of Soap. Brooklyn eagerly But at the end of the proverbial day, Race against time other families and other kids who were genetic mutation that spawned the disease. in the hollow of her tiny throat. anticipates her checkups, because that’s Danie and Jed are, above all, thankful. When Brooklyn arrived, St. Jude going through the same thing.” “Kids with osteopetrosis really “At that point, I realized that jobs when she can see “Doctor Kimmie” and “You can’t sum up our St. Jude was in the process of creating a new Kasow understood their feelings. deserve to have a multi-disciplinary team come and go, but that I might not have “Nurse Debbie” and other special staff experience,” Danie says. “I think it’s best protocol, or scientific treatment plan, for “We tell parents that when they step foot approach,” Kasow says. “Treatment entails a lifetime with Brooklyn,” Danie says. members. described in the way Brooklyn smiles osteopetrosis. As soon as the protocol was through the doors of St. Jude, it is life more than just giving chemo and cells “I just needed to be with her—not try to The attraction is mutual. “She’s one every day…how she’s a beautiful, vibrant, approved, clinicians began searching for altering. You don’t know whether you and antibiotics; we are also helping them work and support us. St. Jude would cover of our miracles,” says Debbie Cherry of outspoken 3½ -year-old. And the way a blood stem cell donor. But time was are going to leave with your child or develop as individuals. That’s what we her care if we lost the insurance. We were the Ambulatory Care Unit. Cherry was she’s so full of life.” l their enemy. Every day, the density of not. Transplant is not easy. But without a strive to do at St. Jude, and we do it well.” staying at Target House, so we didn’t have one of the first people to meet Brooklyn Brooklyn’s bones increased, squeezing out potentially curative transplant, Brooklyn Before undergoing the transplant, the extra financial stress of paying for when she arrived at St. Jude in 2004. healthy marrow and reducing her ability would have died.” Brooklyn’s existing bone marrow had to housing. It suddenly hit me that I could “I saw Brooklyn take her first to fight infection. be destroyed so that her mother’s cells

10 Promise / Summer 2007 Summer 2007 / Promise 11 PHOTOS BY SETH DIXON SETH BY PHOTOS

At 6 feet, 4 inches, the fighter cuts an It is perhaps that same stubbornness imposing figure. Long and lean, he easily that led Timothy to hide the fact that he stands a head taller than most people. was becoming sick. The challenger he faces today, however, “He was throwing up everything he is not like most. Ferocious, unpredictable ate, but he was keeping it secret because and relentless, the opponent’s name alone he didn’t want to miss school,” Theresa strikes fear in many. remembers. “He started losing weight But our fighter is not discouraged. and was always tired. He’d come in from His resolve is too great and the victory too school and go straight to sleep.” important. The headaches, nausea and fatigue As any seasoned prizefighter will tell grew worse. you, it’s not the size of the man in a fight On a Friday in January 2004, that determines the winner; it’s the size of Timothy’s school called. He was too ill the fight in the man. to stay in class and certainly not well Those who know Timothy Parks enough to drive home alone. A doctor would say their money is on him. in the emergency room diagnosed the As a teenager, Timothy beat cancer; sickness as migraines, caused by stress, now, with a relapse at age 20, he’s and Timothy was given a prescription to determined to conquer it again. curb the headaches. Timothy took the medicine, but his A born winner condition worsened over the weekend. From his first breath, Timothy was “He started stumbling, and his balance a fighter. Arriving two months too early was off,” Theresa says. “We knew that and weighing only 3 pounds, the newborn something was very wrong.” suffered a brain hemorrhage that held the On Monday, Timothy underwent threat of death or mental debilitation. a CT scan. Before the family returned “The doctors said all of these home from the doctor’s office, a call on devastating things could happen, and with Theresa’s cell phone asked them to come the bleed as bad as it was, we thought we back to discuss the results. Timothy had could lose him,” recalls Timothy’s mom, medulloblastoma, a tumor that arises Theresa. “But he was a fighter even then.” in the posterior fossa—the lower, rear The preemie exceeded even doctors’ region of the brain. “I couldn’t believe it,” expectations. “At his check-ups, he was Theresa says. “I kept thinking, ‘He’s not always four to five months ahead in his sick enough for something as serious as a development,” Theresa says. “He walked brain tumor.’” at 9 months and ran at 12. He talked in Immediately, Timothy underwent sentences very early and could carry on surgery at a local hospital and was conversations.” referred to St. Jude Children’s Research Timothy had won. Hospital for treatment. Show no weakness Battle for independence By senior year in high school, The surgery to remove the tumor Timothy was a focused student and dutiful was successful, and Theresa recalls son. An honor roll student, he skipped that Timothy was especially upbeat in B v e a grade and was scheduled to graduate recovery. “He was talking, and he wanted a year early, at 16. He was active in the to eat,” she says. “It was like he hadn’t By Summer Freeman school’s Junior ROTC, drill team and just undergone major surgery.” ra e H art color guard programs and held college Seemingly, the hard part was over, scholarships—and even an invitation and the family turned their thoughts to from the U.S. Military Academy. By all leaving for St. Jude. But on the third With a gentle strength and a warrior’s resolve, accounts, Timothy was an overachiever. day after the surgery, Timothy’s world “Bullheaded,” Theresa says teasingly changed. of her son’s determination. “Tell him there “He woke up screaming bloody Timothy Parks battles the enemy within. is something he can’t do, and watch him murder,” Theresa remembers. “He prove you wrong.” couldn’t talk; he couldn’t walk; he

12 Promise / Summer 2007 Summer 2007 / Promise 13 couldn’t do anything.” time he lost initially, but Timothy had developed he sets academic goals for posterior fossa syndrome, a himself, and he’s determined postoperative disorder that to meet them.” By Carrie L. Strehlau can cause mutism or speech Theresa laughs. “Dr. disturbances, decreased motor Gajjar will tell him not to skills and cranial nerve palsies. take so many classes, to Onset typically occurs within slow down. I’ll get on him, 72 hours of surgery, and the but when Timmy wants to syndrome’s cause is unknown. do something, there is no Germ Up to 25 percent of patients Timothy Parks and his physician, Amar Gajjar, MD. stopping him.” who undergo surgeries like Timothy’s perseverance, Timothy’s develop the condition. “He had all the therapies—speech, Theresa says, has been a source of “We can’t pinpoint why some occupational, physical,” Theresa recalls. strength for the family even in the children get it, and some children don’t,” “He didn’t dwell on it; he just started bleakest times. It is also what gave a says Amar Gajjar, MD, co-leader of the moving forward.” sense of perspective during a recent trip St. Jude Neurobiology and Brain Tumor The one or two words he could to St. Jude, when they received ominous Program and co-chair of the Oncology muster eventually grew to sentences and news. Timothy did not feel sick prior to department. “It is hard for parents to see finally to fluid conversations. He traded the visit, and the January 2007 checkup Warfare their normally functioning child behave the wheelchair for a walker and ultimately was supposed to be nothing more than like that. But it’s not like the child for a cane. routine. Exactly three years to the day doesn’t understand what is going on. The “He even grew two inches taller of Timothy’s original medulloblastoma child is still very much aware of what is while he was on chemo,” Theresa says diagnosis, two cancerous spots were found happening.” with a laugh. on his spine, signaling a relapse. Timothy describes the feeling as Three months after coming to “It was bad déjà vu,” Theresa says. being trapped. “I knew what I wanted to St. Jude, the family was able to return “Of course, I was in shock, but Timothy do and say because my thoughts were still home temporarily for Timothy’s high just looked at Dr. Gajjar and asked, ‘OK, there, but all I could do was scream,” he school graduation. Theresa calls it the what do we do to beat it again?’ And I just recalls. moment of triumph. “He had his cane thought, ‘Yes, that’s the way we have to For the teenager, who excelled so with him when we left the house, but look at it. We are going to beat it again.’” easily, existence became an uncontrollable when he crossed the stage, he didn’t For a fight as big as Timothy is state of flux. “Before my diagnosis, I have it. He walked through his whole waging, Theresa is comforted that the was at that point of independence—when graduation without picking it up once.” family is in expert hands. “Before coming you first get your driver’s license and are Timothy had won. to St. Jude, I thought, ‘This is a children’s starting to think about life outside of your cancer hospital; this will be the saddest parents,” Timothy says. “But with the Warrior’s spirit place I’ll ever be.’ But then you see the posterior fossa syndrome, suddenly I was In spring 2005, doctors gave Timothy happiness and the hope, and know you’re depending on my parents for everything. an 85 percent chance that the cancer in the best place you could possibly be. I They had to feed me, bathe me and push would not recur, and he was well enough know Dr. Gajjar and everyone is going to me around in the wheelchair.” to start college, requiring only return visits do what it takes.” Social worker Jeanette Lavecchia to St. Jude every three months. Timothy was given the option to met Timothy within his first few days Timothy enrolled in classes, adopting finish his semester before beginning at St. Jude. “He had truly been thrown an 80-mile daily roundtrip commute radiation. He opted to withdraw from a curve,” she says. “Having been such and the maximum course load per school and start treatment immediately a goal-oriented high achiever, it was semester. Within 15 months—and while because college, Timothy says, will still extremely difficult for him.” maintaining exemplary grades—he earned be there after he has defeated cancer. an associate’s degree in psychology. Not Eventually, he plans on earning a master’s Heart of a champion one to settle, Timothy enrolled in another degree and doctorate in psychology and Timothy may have been knocked university to work on a bachelor’s degree. then returning to St. Jude to work as a down, but he was determined it wouldn’t By 19, he was a second-semester junior counselor. PHOTOS BY ANN-MARGARET HEDGES be for long. with a 3.8 grade point average. “A lot of people think the word While undergoing radiation and “Despite his illness, he has gone back cancer is a synonym for death or the end, chemotherapy treatments to beat cancer, to college, and he’s taking 18 hours of and it really isn’t,” he says. “I had cancer St. Jude Infection Control is the first line of he set out to overcome the side effects credit or more a semester,” Gajjar says. before, and I beat it, and now I just have of the syndrome. “He’s finished the course work and the to do it again.” l defense for patients’ fragile immune systems.

14 Promise / Summer 2007 Summer 2007 / Promise 15 Flushing out the enemy “When you see our patients “The national averages consist of they have to walk a bit further to do it,” For more than 30 years, Infection wearing masks, it is to protect them hospitals that have a very small subset of Williams says. “That is partly why it was Control Director Bonnie Williams has from aspergillus spores,” Williams says. patients who are immune compromised,” important for us to put a sink near our worked at St. Jude and kept a close eye on “Drywall, ceiling tiles—they all contain McCullers says. “Generally at those big patient rooms. Believe me, if a family germs, bacteria and infections that might these spores. Healthy people breathe hospitals, the highest-risk patients are ones has not heard that sink, they do ask when make their way through the hospital doors them in all the time, but we have immune who have cancer. Those patients tend to someone enters the room.” or arise after a patient is admitted. systems to handle it. Our patients do have a 10- to 100-fold higher risk of get- McCullers echoes the sentiment. “When there is a specific need, our not. So, we have machines that clean the ting hospital-acquired infections than their “I am a big advocate for empowering staff step in and help determine what air. We require extra walls in between other patients. We actually have a lower the patient’s parents to be in charge might be causing infection often by construction and patient areas. Our air is infection rate than normal hospitals have of protecting their kids and enforcing culturing things,” Williams says. about 99 percent clean, but we still want for their general population and an even infection control,” he says. For example, St. Jude has specific to take every precaution when there is any lower rate compared to a normal hospital’s Through creative hospital videos rules about items like stuffed animals, construction in the vicinity.” immune-compromised patients.” and one-on-one discussions, patients corrugated cardboard boxes and fingernail The Patient Care Center at Williams attributes the low rates to and families are educated about the polish. St. Jude has a purification system that several factors. importance of hand hygiene. “Some people might think we are continuously circulates air. Infection “We have progressed tremendously “Once, during a visit from a hospital ridiculous, but we would much rather Control staff offer input into building since I started at St. Jude,” she says. surveyor, a patient’s parent was asked be careful,” she adds. Williams is also design to make sure nothing is done to “The antibiotics we administer have if our staff talked to them about hand Infection Control Director Bonnie Williams examines a filter for the purification system that circulates air in the Patient Care Center. Williams and her colleagues are fanatics when it comes a member of the Patient Special Events compromise patient health. improved—and the way we often prevent washing,” Williams says. “The parent to cleanliness—and that dedication pays off in an amazingly low infection rate for St. Jude. Committee and provides guidance to those “I think that really speaks to an infection before it starts is much more looked at the surveyor and said, ‘Yes, all who wish to bring activities like arts and the commitment of the institution to effective. All of these are vital improve- of the time.’ I believe one of the main crafts to the patients. make infection control a top priority,” ments that help us control infection in reasons we have such low infection Germs are gross and sneaky. They can “We think about infection control as “A few years ago, some staff McCullers says. such a high-risk environment.” rates is because our employees are so worm their way into the body and cause being central to everything that goes on wanted to bring dogs into the hospital According to John Curran, director of conscientious about hand hygiene. Our stomach aches, coughing, sneezing and in the hospital,” says Jon McCullers, MD, for pet therapy,” McCullers recalls. “We Design and Construction, the hospital also Battle cry patients’ health is the ultimate motivator.” infections. For healthy people, grabbing Infectious Diseases, and coordinator of the researched the risks, met with staff and controls the air pressure in each building If the war against medicine at the corner store, taking pills infection control committee at St. Jude. created a solution that would provide this and has eliminated carpet in the patient infection had a battle cry, for five days, using three boxes of tissues “At a normal hospital, infection control type of therapy for our patients but not care areas. it would be “wash your and getting plenty of rest is usually is vitally important to keep patients from at the risk of their health. Each week, “Everything is HEPA-filtered in these hands.” According to adequate, thanks to the body’s immune getting complications. At St. Jude, though, the dogs are in a specific area away areas,” Curran says. “We also test this air the Centers for Disease system—ready to fight from patient care. The animals with particle counts, and it is amazingly Control, devotion to invading germs on the spot. must be clean, and patients must clean.” hand hygiene has been But, when a person For the children at St. Jude, have permission from their doctors shown to stop outbreaks On guard undergoes treatment for germs are a devastating enemy to participate. Plus, we monitor in health care facilities, a catastrophic disease, . the activity closely. If we see any Like an army always prepared for reduce transmission of chemotherapy and radiation bacteria in the kids that we would battle, Infection Control staff conduct antimicrobial resistant can disable the immune normally see in dogs, we have to whole-house surveillance each month organisms and reduce system; the immune system’s soldiers are every child is at high risk for getting reconsider it.” throughout the hospital. overall infection rates. not as ready for combat against something infections. The cancer protocols do not “We really do more than the average “No matter what else as simple as the common cold. For the work if all of the patients are getting Rallying the troops hospital when it comes to surveillance,” people do, hand hygiene childrenat St. Jude Children’s Research infections and not making it. Our job is Another important aspect of the job Williams says. “We follow every patient is the most important “We actually have a lower infection rate than normal hospitals Hospital, germs are a devastating enemy. to have a global view of the institution, to is talking to nurses, researchers, staff and admitted to St. Jude. If they come in with thing you can do to stop have for their general population and an even lower rate understand what risks threaten our patients even construction workers on campus infections or develop them in the hospital, the spread of infection,” compared to a normal hospital’s immune-compromised patients,” Armed for battle and to monitor the kids closely to stop or about being aware of their surroundings as we document it.” Williams says. “If a health says Jon McCullers, MD. When children cannot fight the prevent infections.” it pertains to maintaining an infection-free Extensive records are kept, trends are care worker went from germs themselves, St. Jude has its own McCullers is in charge of monitoring environment. monitored and, if a pattern is spotted, ac- patient to patient without army of dedicated staff who are ready and maintaining infection trends within This is important, Williams explains, tion is taken. Last year marked a continu- washing his hands, imagine how many McCullers says he believes St. Jude is to fight. From conscientious doctors and St. Jude. because things like construction projects ation of low rates for infections acquired things could be spread. With our patients, on the forefront of infection control. nurses who constantly wash their hands to “When we do find issues or some that are considered commonplace at most at St. Jude. The rate of infections per 100 we must constantly wash our hands.” “We are small and strict about what Infection Control staff who spend hours type of outbreak, it’s my job to investigate hospitals can present a mine field of discharges has gradually decreased from The hospital has sinks outside we do, so we can more easily manage educating construction workers about the it,” he says. “Also, it is my job to act as hazards to St. Jude patients. For instance, a low of 1.93 in 2004 to 1.91 in 2006, inpatient rooms and hand sanitizer bottles everything and enforce policies,” he says. dangers of drywall particles to Child Life the point person for staff to call if there workers must be careful to avoid the representing the lowest rates in more than throughout patient care areas. “We serve a special population at St. Jude, staff who monitor patient activities for any are any questions or problems within the release of aspergillus spores; if inhaled, 20 years for St. Jude. These rates are also “Unfortunately, the frequency of and it is critically important that we be hint of infection issues, infection control hospital.” these fungal spores can later germinate benchmarked against averages from other someone washing their hands before good at infection control or we can’t is a No. 1 priority. and grow in the respiratory tract. hospitals in the United States. entering a patient’s room is lower when accomplish our mission.” l

16 Promise / Summer 2007 Summer 2007 / Promise 17 PHOTOS BY PETER BARTA

used to make that discovery has started blueprint of what normal genes look like readily available; nobody else had the a “gold rush” worldwide, because it in humans. Scientists also developed new well-annotated samples where we know shows researchers how they can identify technology to aid in the search. the clinical outcome and many other unsuspected mutations in adult cancers, In 2005, the timing and conditions features of the molecular pathology of the as well. were right for St. Jude to conduct a leukemia.” study to pinpoint the lesions that lead to Prospecting for a cure leukemia. The hospital had the technology Nay-sayers along the way During the past four decades, and a vast store of leukemia samples Not everyone in the scientific researchers at St. Jude Children’s from St. Jude patients. “We thought that community had confidence in St. Jude Research Hospital have made incredible we could apply that technology and gain and its approach to the problem. Opinions progress in eradicating such childhood insights into the lesions that were present were divided. Many scientists believed killers as ALL. Researchers and clinicians in leukemic cells that were not present that there were so many lesions that have worked in tandem to figure out in patients’ normal cells,” Downing St. Jude would never be able to identify how to fine-tune drug combinations explains. “We would then be able to take them, and that the project would be a and understand the genetic lesions or that information and start identifying the colossal waste of time. Other people abnormalities that spawn leukemia. number of lesions in existence.” thought the study would not turn up any As a result, the ALL survival rate has lesions. skyrocketed from a terrifying 4 percent in Tapping the resources “We were convinced that there were 1962 to about 94 percent today. While that It was an ambitious proposal, but going to be interesting lesions,” Downing Gold improvement is reason for celebration, St. Jude never balks at a challenge. says. “We knew that it was going to take a the survival rate is not high enough. The The study would be the largest of its lot of hard work and a lot of thought and ultimate goal? One hundred percent. kind thus far. Thanks to the hospital’s a lot of well-designed studies to figure A pathologist by training, James Hartwell Center for Bioinformatics and out which ones contribute and which ones in Downing, MD, has spent the past 20 years Biotechnology, researchers would be able don’t, but we were in a position to do that. trying to understand how genetic lesions to conduct a gene-by-gene comparison “We are positioned to do it because of can cause a cell to become leukemic of DNA taken from both leukemic and who we are—we are St. Jude Children’s and how that information can be used normal cells. Research Hospital,” he says. “First Those to improve diagnosis and treatment. The team used postage-stamp–sized we had the samples, which are well- Downing is particularly interested in how chips, called microarrays, which contain annotated and well-stored. But even more St. Jude leads the way in the that process occurs and how it contributes hundreds of thousands of DNA probes. importantly, we had the human and capital rush to harness the human to leukemia. Using computers, investigators can figure resources. We have the Hartwell Center Hills “We thought that if we could better out whether a gene is missing part of its for Biotechnology and Bioinformatics. understand how each of the genetic DNA or identify increases in the number We have Biostatistics. We have a genome and save lives. lesions leads to leukemia, we could of specific genes. Hematopoietic Malignancy Program that figure out which ones are going to be “Nobody else was positioned to do is a team of people who can collaborate the Achilles heels that we could develop this study,” Downing says. “Nobody on a project like this. And we have the more specific therapy against,” explains else had the collection of tumor samples Pharmaceutical Sciences department that Downing, the hospital’s scientific director. Although researchers In their quest to find the worldwide have studied genetic lesions that lead the issue, nobody knows to leukemia, researchers all of the genetic changes acquired nearly a half- billion data points from that lead to leukemia. patient tissue samples. If scientists could find The team included n January 1848, a construction worker in Northern California spied those genetic lesions and (from left) postdoctoral By Elizabeth Jane Walker a lone gold nugget glinting at the bottom of a stream. As news of catalog the important fellows Salil Goorha, MD, his discovery spread, thousands of prospectors boarded sailing ones, new treatments and Charles Mullighan, ships and hitched mules to wagons, converging on the region in could be created and more MD, PhD; graduate a furious race for riches. That tiny fleck of gold transformed the lives could be saved. student Chris Miller; and American West. Until recently, postdoctoral fellow Ina One hundred fifty-nine years later, a discovery in Memphis, scientists lacked the Radtke, PhD. Tennessee, promises to have a similar effect on the field of cancer research. A team tools for such a project. of researchers found new mutations that contribute to acute lymphoblastic leukemia Then the human genome (ALL), the most common type of childhood cancer. The strategy the scientists project provided a kind of

18 Promise / Summer 2007 I Summer 2007 / Promise 19 has, through years of effort, acquired A glimmer of gold ways to develop therapy based on this normal samples on every patient.” Then the team found a new lesion on information, a task that St. Jude is poised And so the project began. one chromosome. “It was a deletion of a to do through its new Chemical Biology gene, and that gene didn’t mean anything and Therapeutics department. Panning for data to us. There are 20,000 genes, so it was An athlete turned philosopher In the following months, researchers just one of the 20,000,” Downing says. The rush is on acquired nearly a half-billion data points On closer scrutiny, the investigators This study showed the world that shares inspiring life lessons from from samples that had been obtained from realized that the gene, called EBF, was undiscovered lesions most likely exist 242 patients and stored in the hospital’s required for a normal B lymphocyte for all cancers. And St. Jude showed the the school of basebalL. tumor banks. to mature into a mature B-cell. B medical community how to find them. “That was an unthinkable amount lymphocytes are the cells from which “So part of the excitement in the field is, of data,” Downing says. “A year before acute lymphoblastic leukemia arises. The ‘Wow! There are lesions we don’t know that, a couple of hundred thousand data researchers knew that about 100 genes about, and here is the way to find them, points would have been a lot. But now control B-cell differentiation. So they and everybody should roll up their sleeves we were gathering more than 1.2 million decided to look at all of those genes. and do it,’” Downing says. data points on every patient, and we The next gene they looked at was a “The other part is that this is the first were looking at 242 patients, with many gene called PAX5. big paper to say, ‘There are all kinds of repeated tests.” When Downing walked into his lab lesions; here’s the way to validate them, Nobody—not even the companies one day, postdoctoral fellow Charles here’s the way to think about them, and that developed the chips—had fully Mullighan, MD, PhD, was staring at his here are some tricks to analyze the data. figured out how to analyze all that data. computer screen, transfixed. “He was Eventually there is even going to be better technology, but those will just be refinements, and here is the St. Jude Scientific way to go forward.’ It shows us Director James Downing, where to look so that we can begin MD, headed a study investigating new therapies.” that shows researchers Developing therapies based worldwide how to identify on these discoveries will be a long By unsuspected mutations Ruth Ann process. “But, really, to some extent, Hensley in pediatric and adult cancers. “To some extent, it’s like the gold rush,” Downing it’s like the gold rush,” says. “From a scientific point of Downing says. “From a view, what this says is that there’s scientific point of view, gold in those hills. Now we know what this says is that how to find it, and let’s go find it.” there’s gold in those hills. Downing predicts that within Now we know how to find the next few years, this kind of study it, and let’s go find it.” will be conducted on every human

tumor. COURTESY OF SNELL PROSTHETIC AND ORTHOTIC LABORATORY, ARKANSAS “As a result, an incredible No one in the world could tell St. Jude literally white,” Downing recalls. amount of information is going to how to combine data from the chips, “You are not going to believe what come out that will be a leap in our analyze it, normalize it or visualize it. No I just found,” Mullighan said. “Thirty understanding of what causes cancer,” one had yet figured out how to develop a percent of childhood B-lineage ALL have he says. “People are racing to do this, program that would statistically pick out a deletion in PAX5.” and that’s good. The competition will likely lesions from the millions of data Nobody had seen that before. accelerate research, and we will end up points on every patient. So teams across Eventually, the team discovered that getting answers much more quickly, which St. Jude worked together on the problem. 40 percent of patients with ALL had is what we are really after, especially in “Every refinement in analyzing the deletions or mutations in either PAX5, a place like St. Jude. We really don’t care data helped us see more within it, and EBF or Ikaros, three genes that control about getting the credit; we just want to so very quickly we were able to show the differentiation of blood stem cells into figure out how to improve treatment for that the data was exquisitely sensitive, mature B cells. When these cells do not kids with cancer.” l highly reproducible and was able to mature, leukemic cells continue to grow, identify many of the lesions that we knew eventually killing the patient. existed,” Downing says. Researchers are now considering

20 Promise / Summer 2007 Summer 2007 / Promise 21 e can tell you the number of through this and getting Robert well.” what it may have held I don’t know, but Crossing home woods that day riding his four-wheeler stitches in a regulation baseball, Crom, who later asked Robert suddenly it was taken away from me.” When he’s not coaching Little when what he calls a “miraculous log” hit Babe Ruth’s batting average and to speak to other patients undergoing But as fast as a homerun can shake a League or working as a senior marketing him in precisely the spot where his cancer theH first year the Atlanta Braves won the amputation, credits Robert’s parents for batter’s slump, Robert kicks the dust off analyst for a communications company was growing. PHOTO BY SETH DIXON pennant. He knows the average speed of his positive resolve. “He reflected the his shoes and shifts into coaching mode… in Arkansas, Robert pursues his passion “I know someone was watching over Cy Young’s fast ball, the distance from attitude of his mother and father—that he sharing life lessons. for photography and spends time with his me that day,” Robert says. “Something home plate to first base and the exact could do anything without a leg that he “I learned not to pity what I had lost, wife and stepson. caused that log to hit me. Then the date the lower portion of his left leg was could do with one,” she says. “They had but to take that motivation, that drive that Since the early 1990s, limb salvage doctors found the cancer and did what amputated. Thirty-five-year-old Robert a strong, underlying faith that charted the I had in sports, and use it in other areas of procedures have greatly reduced the they had to do about it—and here I am Byrd learned at an early age that like a course for their son.” my life,” he says. “So when we talk about number of amputations for patients like today.” baseball, life can come at you fast and Robert, who was fitted with his first purpose in life and why things happen, Robert. However Crom, who now works With his inspiring drive and hard. When a cancer diagnosis threw prosthetic limb six months after surgery, maybe that is part of it.” as a nurse practitioner in the St. Jude After determination, Robert has racked up some him a curve as a promising 11-year-old agrees. “Through the entire ordeal, Perhaps another part of it is inspiring Completion of Therapy Clinic, explains impressive stats of his own. He achieved athlete, he swung back. my parents were always there. They the Little League baseball players on the that even a long-term cancer survivor like an unheard of .569 batting average when Byrd has taken the competitive encouraged me and inspired me to never team he coaches, a team he refers to with Robert is not entirely out of the woods. he returned to the baseball diamond a year spirit and drive that made him a sports give up,” he says. “They taught me that a father’s pride as the cream of the crop. “Issues like heart disease, nerve after his surgery, wearing his prosthetic phenomenon in grade school and applied if you want something in life, you have “These are 8-year-old kids, but if you damage and infertility can affect these limb. He has coached Little League for 16 it to his pursuit of life. His refusal to to work for it. You can’t rely on someone use the tool right, you are giving these patients later in life due to the toxicity of years and has seen the legendary baseball accept defeat has also inspired kids on else to do the job for you.” children valuable life lessons,” he says. “I the treatments,” Crom says. “That’s why film Field of Dreams 12 times. But it is the Little League team he coaches to keep try to teach them how to take the game of the studies we conduct with our survivors Robert’s winning attitude in the game of “Robert was so determined to play baseball one Winning drive swinging, no matter what. more season after he finished chemotherapy baseball and apply it to life. I tell them, are so important, as we continue to life that has scored the biggest hit with that the baseball association let him play,” says Those lessons rang true when Robert ‘If you strike out, you have to get back develop safer, targeted therapies.” friends, family and enough 8-year-olds Three strikes Opal Byrd of her son, pictured here barely more had to undergo a 42-week chemotherapy up; you have to try again.” But Robert was glad he was in the to fill a triple-A ballpark. It’s one for the “A log in the trail hit me on the side than a year after his surgery. program, in the days before effective record books. l of the leg,” Robert recalls of the minor anti-nausea drugs were available; and a injury he incurred 24 years ago that left leg, 2 inches above the knee. Strike second surgery, a year after the first, to would lead to a devastating discovery. “I three. remove a bone spur at the base of his was riding four-wheelers with my friends, “It was May 7, 1984,” Robert says amputated limb. and the log hit me in the left leg.” That matter-of-factly. “My leg was amputated Even someone whose personal motto was the first strike. on a Monday. I was released that Friday, is, “Thank you, dear Lord, for letting me A swollen knot formed below his left and I went home and rode my four- wake up, and I will deal with whatever knee. The tender whelp persisted, and the wheeler.” happens this day,” faces moments when all star began limping. Clearly, three strikes were not taking that is not easy. A physician in the Byrds’ Arkansas this slugger out of the game. “I remember a couple of days before hometown referred Robert to a clinic in my surgery, just looking down at my Memphis. X-rays revealed an aggressive A new game plan leg and kind of crying. I told my leg, form of osteosarcoma, bone cancer, “All my brain could think of then ‘Goodbye. I’m not ever going to see you attacking Robert’s femur. That was was, ‘How quickly can I return to again.’” Robert recalls. “That was very, strike two. normalcy?’” Robert says. very hard for me—knowing a part of “When you’re a boy that age, you “Amputation was all we had to your body is really gone.” think about two things—playing with offer in those days,” says Debbie Crom, The future as Robert once saw it your friends and playing sports,” Robert RN, PhD, a St. Jude nurse practitioner was also gone. “I excelled in every explains. “When the doctors said I had assigned to Robert’s case. “He was imaginable sport, and I don’t cancer I thought, ‘Okay, what does that already being scouted by high school mean that in a bragging way,” mean?’ I just wanted to be with my athletic programs because he was so he explains. “Sports were friends and play ball. That’s all I wanted talented, and to walk in that room and tell the pinnacle of my to do.” such a good kid and gifted athlete that we life back then. My The clinic immediately sent Robert to had to remove part of his leg…” Crom future as an St. Jude Children’s Research Hospital. In pauses briefly, struck by the clarity of athlete was a whirlwind three-week period, Robert’s that memory. “It’s a moving experience bright; aspirations went from reaching home that stays with you for a long time,” she plate to reaching his 12th birthday. Acting confides. “But Robert and his family quickly to stop the spreading cancer, never missed a beat. They doctors ordered an amputation of Robert’s focused on getting

22 Promise / Summer 2007 Perspective It’s All about the Children “Adults have lived their lives, and children haven’t. I want to help give kids the opportunity that we’ve been given. As adults, it’s our duty to give back to kids and to do what we can to help them live long, healthy lives.”

By Jaime Pressly

or the past several years, organization that doesn’t I’ve helped raise money ask for a dime from the for a place I’ve never people who really need visited and for children their help. I’ve never even met. Adults have lived their Some people might think lives, and children haven’t. F WIRE IMAGE OF PHOTO COURTESY that’s unusual, but I think it makes I want to help give kids the perfect sense. opportunities that we’ve The place is St. Jude Children’s been given. That’s why I do Research Hospital. I’ve tried to all the fundraisers I can for visit the hospital several times, but children. As adults, I think a conflict has always come up at it’s our duty to give back the last minute with my work that to kids and to do what we prevents me from making the trip. can to help them live long, But that doesn’t really matter. You healthy lives. see, I don’t think you have to go to The things St. Jude St. Jude to want to help. For me, does amazes me. The it’s about being enthusiastic about organization has to raise helping children. That’s what the millions of dollars every hospital is there for—to help kids. I year so that it can continue think if you love children as much as saving the lives of kids. I do, then you do whatever you can As an actress—and as do to help them. a mom—I need to do My involvement with St. Jude everything I can do to make began several years ago when I joined that possible. Coors Light in a Halloween fundraiser Last October, we had a fashion show You never know, it could be your during the month of October. All of for my J’aime line of clothing. At an child—God forbid—who needs their the proceeds from that project went to after-party, we raised about $15,000 in help. St. Jude. We raised more than $2 million three hours. And recently, as part of my in one month just through that campaign baby shower, Godiva donated $25,000 to Emmy-award nominated actress, model alone. That was pretty great. And that’s St. Jude. I’m expecting a baby boy about and fashion designer Jaime Pressly is the when I rolled up my sleeves and began a month from now. star of the NBC sitcom My Name Is Earl, doing what I could to support St. Jude. I think it’s important to support has appeared in numerous movies and I’m somebody who likes to see how St. Jude because of the amazing has her own clothing line, J’Aime. l much more I can do—in a big way. So things that they do for children and I’ve been helping ever since. their families. They’re a charitable

24 Promise / Summer 2007 Cinderella has nothing on St. Jude patients. The hospital held a prom for patients and siblings this spring in the Danny Thomas/ALSAC Pavilion. Dresses were donated by hospital employees. The Child Life department coordinated the dance and arranged for outside salon specialists to assist the girls with their hair and make-up. Glass slippers were optional. PETER BARTA

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