www.stjude.org/PromisePromiseSPRING 2013BLAMEIT ON THECHEMOHow do humor andoptimism help this teenface challenges?
17Promiseis a quarterly publication of theCommunications DepartmentSt. Jude Children’s Research Hospital262 Danny Thomas P...
PromiseA publication of St. Jude Children’s Research Hospital Spring 2013St. Jude Children’s Research Hospital’s missionis...
2 Spring 2013 www.stjude.org/Promisehe chemo made her do it.Originae Brown has decidedthat this is one time in her life wh...
Spring 2013 www.stjude.org/Promise 3Originae enjoys expressing herself through rap.“There’s a message in all of my songs,”...
ANN-MARGARETHEDGES4 Spring 2013 www.stjude.org/Promisehave to stress about the cost ofhousing, food, airfare or medicalbil...
Spring 2013 www.stjude.org/Promise 5to Memphis, where she underwentsurgery to remove the infection.Originae also became ex...
6 Spring 2013 www.stjude.org/PromisePuttingQualityinto LifeThe St. Jude Quality of Life andPalliative Care Division strive...
PETERBARTASpring 2013 www.stjude.org/Promise 7Children often enjoy rankingtheir favorite dance moves,athletic achievements...
PETERBARTA8 Spring 2013 www.stjude.org/Promisemembers grieving the loss of achild. Her son, Matt, a formerSt. Jude patient...
Spring 2013 www.stjude.org/Promise 9When 6-year-old Alayna Baldwin’s cancer was discoveredand she began treatment at St. J...
COURTESYOFSHUTTERSTOCK10 Spring 2013 www.stjude.org/Promiselaid the scientific foundation for improved diagnostictesting a...
SETHDIXONSpring 2013 www.stjude.org/Promise 11into 46 chromosomes, half from each parent. But themajor hypodiploid ALL sub...
12 Spring 2013 www.stjude.org/PromiseWhen 3-year-old Kayden McLin celebrated theend of chemotherapy at St. Jude Children’s...
Spring 2013 www.stjude.org/Promise 13No matter your socioeconomic status, race or religion,as soon as you tell these famil...
14 Spring 2013 www.stjude.org/PromiseBy Elizabeth Jane Walkerand His Sibling StarsWhen 3-year-old Ingramwas diagnosed with...
Spring 2013 www.stjude.org/Promise 15“Ingram has a tumor on his brain, and he’s going toneed surgery.”Out of this worldAmi...
16 Spring 2013 www.stjude.org/Promisebut they couldn’t do anything physical to help him.”Then the girls began negotiating....
The day of her most recent magneticresonance imaging (MRI) exam atSt. Jude Children’s Research Hospital,Kie’a Boyce seemed...
18 Spring 2013 www.stjude.org/Promiseher third-grade class. The knowledgehas empowered her to make informeddecisions about...
Spring 2013 www.stjude.org/Promise 19The service organization Epsilon Sigma Alpha(ESA) is part of the extended family ofSt...
20 Spring 2013 www.stjude.org/PromiseResearch HighlightsOne of the largest studies of the role inherited geneticvariation ...
Spring 2013 www.stjude.org/Promise 21St. Jude has blown the whistle on the impact that drugshortages can have on children ...
22 Spring 2013 www.stjude.org/PromiseHighlightsSt. Jude recently received kudos from two nationalmagazines. The hospital w...
Spring 2013 www.stjude.org/Promise 23Like Goliath’s David, Gretchen Witt is facing a giantand powerful adversary—but unlik...
24 Spring 2013 www.stjude.org/PromisePers pective By Hill Harper	Child’s PlayWhen I visited St. Jude Children’s Research H...
©2013ALSAC/St.JudeChildren’sResearchHospital(12927)St. Jude patient Kayla:California girlThe very fact that you are holdin...
Non-Profit Org.U.S. PostagePAIDPermit No. 187Hickory, NCCHANGE SERVICE REQUESTED262 Danny Thomas PlaceMemphis, TN 38105-36...
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St Jude Promise Magazine - Spring 2013


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Receive Promise magazine by mail or online to learn about the innovative research and excellent medical care happening at St. Jude. Your free subscription will start with our next quarterly issue of Promise.

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St Jude Promise Magazine - Spring 2013

  1. 1. www.stjude.org/PromisePromiseSPRING 2013BLAMEIT ON THECHEMOHow do humor andoptimism help this teenface challenges?
  2. 2. 17Promiseis a quarterly publication of theCommunications DepartmentSt. Jude Children’s Research Hospital262 Danny Thomas PlaceMemphis, Tennessee 38105-3678Subscribe online: www.stjude.org/PromiseContact us: promisemagazine@stjude.orgHospital Director andChief Executive OfficerDr. William E. EvansALSAC Chief Executive OfficerRichard C. Shadyac Jr.Senior Vice Presidentof CommunicationsKimberly OvittDirector of InternalCommunicationsJudith Black MooreDirector of MarketingCommunicationsNicola ZiadyPrint Production Managerand EditorElizabeth Jane WalkerArt DirectorJessica W. AndersonContributing WritersJoyce M. HarrisKerry HealyMike O’KellyMary PowersLeigh Ann RomanPhotographersPeter BartaSeth DixonAnn-Margaret HedgesJustin VenemanCover story2 Blame It on the Chemo Not even cancer can keep this sassy, high-fashion optimist fromsmiling, singing and encouraging her fellow patients.Features6 Putting Quality into Life St. Jude employs several methods to improve quality of lifefor patients.9 Next-Generation Discoveries The Pediatric Cancer Genome Project uncovers thegenetic mistakes that give rise to cancer.12 A Partner in the Journey A parent-led initiative offers support to St. Jude families.14 Ingram and His Sibling Stars Two little girls find ways to help during their brother’s cancertreatment.17 Coping Plans for Easier Scans This program helps kids with sickle cell disease avoidanesthesia during MRI scans.19 The Power of Friendship ESA puts heart into the St. Jude mission.23 One Tough Cookie Sweets become a weapon in the battle against cancer.Research Highlights20 News and AchievementsPerspective24 Child’s Play By Hill Harper6
  3. 3. PromiseA publication of St. Jude Children’s Research Hospital Spring 2013St. Jude Children’s Research Hospital’s missionis to advance cures, and means of prevention, forpediatric catastrophic diseases through researchand treatment. Consistent with the vision of ourfounder, Danny Thomas, no child is denied treat-ment based on race, religion or a family’s abilityto pay.St. Jude is an Equal Opportunity Employer.For inquiries about stories in this publication,call (901) 595-2125 or email promisemagazine@stjude.org. Articles may be reprinted with writtenpermission. ©2013.Editorial Advisory BoardDeepa Bhojwani, MDLeah BrooksLeslie DavidsonAditya Gaur, MDChristine KirkJoseph Opferman, PhDAmy ScottSheri Spunt, MDCarrie L. StrehlauPenny TramontozziRegina WatsonCarole Weaver, PhDJohn ZacherSteve Zatechka, PhDOn the cover: Originae BrownPhoto by Ann-Margaret HedgesPublic Information:1-866-2STJUDE (278-5833),ext. 3306Donations: 1-800-822-6344Visit our website at www.stjude.org.St. Jude Children’s Research Hospital,American Lebanese Syrian AssociatedCharities and ALSAC are registeredtrademarks.9
  4. 4. 2 Spring 2013 www.stjude.org/Promisehe chemo made her do it.Originae Brown has decidedthat this is one time in her life whenshe has a foolproof excuse for anypersonal shortcoming. The vivaciousteen claims she can blame almostanything on the chemotherapy shereceives as part of her treatment forthe bone cancer osteosarcoma.“If I forget something, I can justsay, ‘Oh, it’s that chemo—it makesme forget things,’” she says, flashinga mischievous smile. In fact, whileundergoing treatment at St. JudeChildren’s Research Hospital, the15-year-old is writing a rap songtitled “Blame It on the Chemo.” It’sone way she can thumb her noseat the disease that has temporarilyinterrupted her life. Originae doesn’tcomplain about her situation; she’sconfident that a positive attitude,steadfast faith and excellent medicalcare will carry her through.“I don’t want any sympathy orpity, because I know I’m going tocome out of here 100 percent fine,”Originae says.Blame It on theOriginae Brown takes challenges in stride. Hairloss. Major surgery. Even the chemotherapy thatmakes her so sick. No matter what happens, thishigh-spirited teen keeps smiling.By Elizabeth Jane WalkerTwo simple questionsWinston Churchill once definedattitude as “a little thing that makesa big difference.” For Originae,attitude is not a small thing—it’sthe only thing. Since arriving atSt. Jude in April of 2012, theteenager has delighted caregivers andfellow patients with her optimismand sunny demeanor.Originae’s journey toSt. Jude began in the seventhgrade, when the energetic youngathlete experienced pain in herright leg during volleyball, softballand cheerleading activities.“She was misdiagnosed formore than a year by our localdoctors,” says Originae’s mom,Shandell Brown. “They treated it astendonitis, telling us to apply ice orwarm compresses and to elevate herleg. Nothing showed up on MRIs orX-rays.”Finally, in the spring of hereighth-grade year, Originae tumbledonto the floor in excruciating pain.This time, tests revealed a mass inher right knee. The doctor suspectedosteosarcoma, the most commontype of bone cancer in children andadolescents.Originae had only two questionsfor the physician: “Is it curable?”and “Am I going to die?”“It is curable,” he replied. “Oneof the best hospitals for pediatriccancer is St. Jude. We’re going tosend you there.”Originae immediately exuded asense of peace and allayed the fearsof her family and friends. “BecauseI was calm, the rest of my familybecame calm about it,” she explains.The sprint beginsOriginae and her parents quicklyadjusted to life at St. Jude.“I had never been to a facilitywhere everyone was so friendly andopen and compassionate—fromthe receptionists to security to thehousing staff,” Shandell says. “Theymade us feel like we had a homeaway from home. We didn’t even“I’ve learned that life is bigger than the small things,”Originae says. “I’ve learned not to take life for granted.And I’ve learned that you should never give up. Justsmile and keep going.”PHOTOSBYANN-MARGARETHEDGES
  5. 5. Spring 2013 www.stjude.org/Promise 3Originae enjoys expressing herself through rap.“There’s a message in all of my songs,” she says.“I want to use music in a positive way to reachother kids.” To hear one of Originae’s songs, visitwww.stjude.org/Promise.
  6. 6. ANN-MARGARETHEDGES4 Spring 2013 www.stjude.org/Promisehave to stress about the cost ofhousing, food, airfare or medicalbills. I immediately realized that wehad made the best decision to haveour daughter’s treatment here.”At St. Jude, Originae enrolledin a clinical trial that combinedstandard chemotherapy with theaddition of a novel drug calledbevacizumab. This antibody stopstumor growth by preventing theVEGF protein from stimulatingnew blood vessel formation inthe tumor.Originae learned that thistreatment to shrink the tumorwould be followed by a limb-sparing operation and additionalchemotherapy.Her St. Jude oncologist, WayneFurman, MD, warned the teen thatthe journey would be long.“This is not a sprint; it’s amarathon,” he told her.“No, not for me,” she replied.“I’m going to sprint through thiscancer treatment.”The teen approached hertreatment with the same zeal shehad previously exhibited on thevolleyball court. “I always tell mychemotherapy, ‘You’re not going toget the best of me,’” she says.When her hair began to thin,Originae washed out the remainingstrands. “I never thought I’d like abald head, but I’m fine with it,”she says.Every morning, regardlessof her nausea or exhaustion,Originae spends a couple of hoursbuilding the perfect outfit, completewith matching nail polish andaccessories. In cool weather, shemay add a wig to her ensemble.Shandell has often beggedher daughter to put on a T-shirtand jeans and abandon her beautyrituals. Originae refuses to considerthat option.“Every day, I’m going to puta smile on my face, and I’m goingto look my best,” she explains. “Ican get through this as long as I’mstrong and I have a good attitude. Ifyou don’t have a good attitude, it’snot going to be as easy.”Temporary setbacksIn August of 2012, Originaeunderwent a limb-sparing operation,during which surgeon Michael Neel,MD, removed the diseased boneand replaced it with a prostheticbone. Through the followingmonths, Originae worked withstaff in St. Jude RehabilitationServices to regain the use of herleg while undergoing additionalchemotherapy treatments.In November, doctors allowedher to return home to Louisianafor Thanksgiving. A happyhomecoming transformed into anightmare when she developed alife-threatening infection in herleg. She was rushed by ambulanceOriginae says she aspires to a medical career because of Wayne Furman,MD (top photo). “Dr. Furman inspires me, and I want to be like him,” sheexplains. At the hospital’s Halloween festivities, Originae dressed asFurman, affixing a “Furmanator” nametag to her lab coat and emblazoninghis favorite quote on her back: “This is not a sprint; it’s a marathon.”PETERBARTA
  7. 7. Spring 2013 www.stjude.org/Promise 5to Memphis, where she underwentsurgery to remove the infection.Originae also became extremelysensitive to the chemotherapydrug methotrexate, which causesmucositis, a painful inflammationof the membranes lining the entiregastrointestinal tract. Her treatmentwas delayed several times becauseof hospitalizations due to thiscomplication.“In December, I spent threeweeks in the hospital becauseof mucositis,” she says. “It washorrible. I couldn’t hold down food,and I was burned from the top tothe bottom. My fingers and toeseven burned from the chemo.”Contagious optimismIncredibly, Originae kept onsmiling—even when the mucositisprevented her from speaking.For Christmas, she gavespecific instructions to her family:“I don’t want anything; I haveeverything I could possibly want,”she told them. “Just make adonation to St. Jude.”As time passed, Originae’sclinical team marveled at theteen’s perpetual buoyancy and herprofound sense of gratitude.“Initially, I must admit that Ithought she was in denial,” Furmansays. “But then I realized it’s justthe way she is—with her bubbly,positive attitude. Not only does shecontinue to smile, but when peoplecome see her, they usually walkaway smiling, too.”“You can’t help but love her,”adds Margaret Edwards, RN,of Pharmaceutical Sciences. “Apositive attitude goes a long waywhen you’re fighting a diseaselike cancer.”Occasionally, Originaeconfused her medical team byOsteosarcomachildren and adolescents in theU.S. are diagnosed with thistype of bone cancer each year.5-year survival rate for patientswhose disease has not spread.of patients with localizeddisease can be considered forsurgery to replace the diseasedbone with a prosthesis or graft.40075%Clinical trialsFor information about the latest St. Judeclinical trials for osteosarcoma and otherpediatric cancers, visitwww.stjude.org/clinicaltrials.95%cheerfully reporting a high painlevel—perhaps an 8 out of 10.“Dr. Furman once said, ‘Ifthat’s an 8, then what does a zerolook like?’” Originae recalls. “Oneday I came in the clinic with nopain at all, and I was jumpingaround and full of energy. He said,‘Well, now I know what a zerolooks like.’”Pass it onOriginae has become a self-appointed happiness ambassador.“It’s my job to make peoplehappy around here,” she says witha grin. “If I see someone who’sdown, I’m definitely going to talkto them.”The teen has become a resourcefor staff, who understand the powerof a peer.“Originae is the life ofthe party, but she’s alsohumble and thoughtful andreflective,” says JessikaBoles of Child Life.“When she enters a room,everybody’s her friend. Shehas never met a stranger.”Boles first encounteredOriginae at an eventcalled “Ask the Teens,”in which patients offeredtheir suggestions andobservations about thehospital’s Child Lifeprogram. In the followingmonths, Originaeparticipated in “Real Talk”groups, in which teensshare their feelings andinsights with chaplainsand Child Life specialists.Boles observed thatother teens were drawnto Originae, who offeredsound advice about topicsranging from dealing withnausea to navigating the socialscene.“Sometimes, patients who havebeen down about their diagnoseswill tell me that they ran intoOriginae and that she talked withthem,” says Mistie Parker, RN, ofthe Ambulatory Care Unit. “I don’tknow what she tells them, but shemakes them feel better.”Originae says she has becomestronger and more confident duringher journey through cancer. Shehas also learned a few lessons:“I’ve learned that life is bigger thanthe small things,” she says. “I’velearned not to take life for granted.And I’ve learned that you shouldnever give up. Just smile and keepgoing.”And when she runs into aproblem or challenge? That’s easy:Blame it on the chemo. l
  8. 8. 6 Spring 2013 www.stjude.org/PromisePuttingQualityinto LifeThe St. Jude Quality of Life andPalliative Care Division strives tobecome an international resourcefor improving the quality of lifefor patients and their families.By Mike O’Kelly
  9. 9. PETERBARTASpring 2013 www.stjude.org/Promise 7Children often enjoy rankingtheir favorite dance moves,athletic achievements orartistic performances on scalesfrom 1 to 10, but those numeralscan have a different meaning forsome patients undergoing treatmentat St. Jude Children’s ResearchHospital. Their rankings are part ofan assessment tool developed by thehospital’s Quality of Life specialists.This tool helps St. Jude staff identifyand manage issues affecting childrenundergoing treatment.Through their initialassessment and follow-up visits, these speciallytrained employees workwith a patient’s primarycare team and familyto incorporate otherdisciplines to address thechild’s range of needs.“If we notice anydistress during theassessment, then webrainstorm and talkwith the patient’s familyabout how we can besthelp them,” says AngelaSnyder, NP, who alongwith Karen Williams,NP, serves as one of two advancedpractice nurses known as Quality ofLife specialists.This interaction with patientsand families is an integral part of aSt. Jude effort to improve the qualityof life for patients and their familymembers.Integrating careJustin Baker, MD, and hiscolleagues provide quality-of-lifeand palliative care services early ina child’s treatment journey.“We focus on communicating,building relationships and continuingthose relationships across variouscare environments,” says Baker,chief of the hospital’s Quality ofLife and Palliative Care division.“We’ve been able to create a modelwhere palliative care and oncologyare working hand-in-hand muchearlier.”Through clinical trials, consultservices and cross-coordinationof care, Baker’s team ensures thatcommunication lines include thechild’s primary care team as wellas social workers, chaplains, childlife specialists and other staff insupportive roles.The St. Jude program is oneof only a few in the nation thatprovides services in a variety ofhealth care settings: intensive care,inpatient, outpatient, patienthousing and patients’ homes.Baker’s team works withclinical areas across campus toidentify palliative care championsfrom each service to further thatintegration of care.The division has also branchedout to establish roots in the Memphiscommunity, collaborating with localpartners to form the Quality of Lifefor All Kids Program to serve theneeds of children who are sufferingfrom complex chronic conditions.“Because we are a patient andfamily-centered care hospital, it’simportant for us to keep familiesand their illness experiences in theforefront of our minds,” Williamssays. “We work hard to stay involvedwith the families.”Families at the centerBaker stresses the importance ofinvolving families in every aspect ofthe division’s work—from strategicplanning to the Quality of Lifeconsult service.Team members have partneredwith bereaved parents to obtainrecommendations, which haveincluded the addition of aprofessional to provide supportfor surviving family members andhospital staff after the loss of achild. As the hospital’s newbereavement coordinator, NancyNoyes personally relates to familyTwo-year-old JocelynWoodruff and her mom,Joanna, visit with DeenaLevine, MD, and JustinBaker, MD, during a Qualityof Life consultation.“All of these efforts combineto help kids have good days.Our goal is to become a worldwideresource in finding the best ways tomake that happen.”
  10. 10. PETERBARTA8 Spring 2013 www.stjude.org/Promisemembers grieving the loss of achild. Her son, Matt, a formerSt. Jude patient, died in 2008after a six-year battle with a braintumor.“It’s amazing to be back atSt. Jude as a health care professionalinteracting with people who playedsuch a big part in Matt’s life,” saysNoyes, who brings to her positionan extensive background in pediatriconcology, research, and child andadolescent psychiatry.“Everyone grieves differently,”Noyes continues, “and I feel that asa bereaved parent, I’ll have a uniqueconnection to families.”A steering committee consistingof parents and St. Jude staff willtrain bereaved parents to serve asmentors and educators for otherfamilies and hospital staff. Thiscommittee will also help plan anddevelop the annual St. Jude Day ofRemembrance event.Furthering educationIn addition to involvingfamilies, the division offerseducational seminars and activitiesfor hospital employees.St. Jude also partners withtwo other health care institutionsto provide a fellowship programfor future hospice and palliativemedicine physicians.Trainees in the program receivea year of palliative care training aftercompleting their initial fellowshipin pediatric hematology andoncology. Currently, only five suchprograms exist nationwide.Baker and his team are alsoworking to continuously integratepalliative care educational sessionsinto the core training curriculathroughout the hospital.“There is always going to be aneed for the additional resources ofa palliative care team, but integratingpalliative care principles into theeducation of future oncologists isimportant because the best people toprovide the highest-quality palliativecare are the primary oncology team,”Baker says.The team also partners withother hospital programs on collabora-tive studies and has worked withthe St. Jude International OutreachProgram to educate staff at partnersites about quality-of-life issues.Palliative care researchThe division aims to integratepalliative care earlier in a patient’streatment journey by introducinga number of clinical trials—manyof which focus on how the serviceaffects patient outcomes and howit is being received by patients andfamilies.“A huge amount of research isneeded to develop and find waysto standardize and improve care,”observes Deborah Gibson, Qualifyof Life and Palliative Care clinicalresearch associate.The team has made significantdiscoveries and has won two nationalresearch awards in such areas as:• parent support,• symptom management,• informed consent and• end-of-life decision making.Baker and Deena Levine, MD,who leads the division’s research onethics and decision-making, plan tofurther explore how early integrationof care affects outcomes.A global resourceDeveloping a comprehensiveprogram that serves as a model forother quality-of-life and palliativecare programs throughout the worldis an ongoing process. As the divisiongrows, its staff seeks new waysto integrate care while educatingclinicians, working with familiesand studying the impact of thesemethods on the lives of patients.“All of these efforts combineto help kids have good days,” Bakersays. “Our goal is to become aworldwide resource in finding thebest ways to make that happen.”lFor more information, visit:www.stjude.org/quality-of-life.Quality of Life specialists Karen Williams, NP (at left), and Angela Snyder, NP,discuss the best resources to offer a patient’s family.
  11. 11. Spring 2013 www.stjude.org/Promise 9When 6-year-old Alayna Baldwin’s cancer was discoveredand she began treatment at St. Jude Children’s ResearchHospital, her parents were stunned and anxious. “Youwould think you’d have a hint,” Alayna’s mother Marla says. “But shehad never been sick, not even a cold. The diagnosis was such a shock.Your whole vision of her life suddenly changes.”Fast forward almost five years. Alayna’s hair, once lost due tochemotherapy, flows halfway down her back. The months she spent inisolation following a 2008 bone marrow transplant for an uncommonsubtype of acute myeloid leukemia (AML) are a dim memory. Today,Alayna rides bicycles, gets dirty playing outdoors and paints herdog’s nails. And, now, thanks to the St. Jude – Washington UniversityPediatric Cancer Genome Project, doctors know more about mistakesthat give rise to the cancer Alayna had.In the past three years, the Pediatric Cancer Genome Project hasprovided not only new details about the mutations that underlie thedevelopment and growth of a range of childhood cancers, but has alsoThe Pediatric Cancer GenomeProject may help parents andscientists better understandthe genetic mistakes that giverise to cancer.By Mary PowersDiscoveriesNext-GenerationRecent findings fromthe Pediatric CancerGenome Projectshed new light on thegenetic missteps thatlead to AMKL, thetype of cancer AlaynaBaldwin battled.PETERBARTA
  12. 12. COURTESYOFSHUTTERSTOCK10 Spring 2013 www.stjude.org/Promiselaid the scientific foundation for improved diagnostictesting and the next generation of more effective, lesstoxic therapies.Three recent results from the PediatricCancer Genome Project have excitingimplications for the future of cancerresearch and treatment:Scientists have discovered a genetic mistakeresponsible for a significant percentage of acutemegakaryoblastic leukemia (AMKL) in children.AMKL, the disease Alayna battled, accounts forabout 10 percent of pediatric AML.James Downing, MD, St. Jude scientific directorand the Pediatric Cancer Genome Project’s St. Judeleader, was senior scientist in a study that found almost30 percent of patients with this subtype of leukemiahave cancer cells that produce an abnormal protein.Investigators linked the protein to the rearrangementof chromosome 16. The rearrangement brings togetherthe front end of a gene for making a blood protein andthe back end of a gene not previously linked to cancer.That gene makes a protein normally produced only inkidney cells. The result is called a fusion protein.When researchers introduced the fusion protein intoa variety of laboratory models, the protein switched ongenes that drive immature blood cells to keep dividinglong after normal cells have died. Such unchecked celldivision is a hallmark of cancer.Not only did researchers discover that the fusiongene contributes directly to cancer development, butscientists also found that patients with the mistake weremore likely to fail therapy.Now St. Jude investigators are beginning the task oftranslating these discoveries into treatments for patients.“We are collaborating with the Departmentof Chemical Biology and Therapeutics to identifycompounds that are effective against this leukemiasubtype,” says Tanja Gruber, MD, PhD, a St. Judeoncologist who helped lead the AMKL study.The Pediatric Cancer Genome Project playedan important role in the discovery of the geneticbasis for a high-risk form of leukemia known ashypodiploid acute lymphoblastic leukemia (ALL).Charles Mullighan, MBBS(Hons), MSc, MD, ledthe multi-institutional study confirming that the cancerhas distinct subtypes that are distinguished by thenumber of chromosomes lost and the submicroscopicgenetic alterations they harbor.Almost all human cells carry DNA condensedPediatric CancerGenome ProjectFor more information, visit www.stjude.org/pcgp.The Pediatric Cancer Genome Project has harnessednext-generation sequencing technology to advanceour understanding of some of the most aggressive andpoorly understood childhood cancers and to build thefoundation for new, more targeted therapies.Such sequencing involves determining the exactarrangement of all 3 billion-plus chemical bases ofhuman DNA.Cancer cells have changes in their DNA relative tonormal cells. To identify these changes, the project hasdeciphered the complete cancer and normal genomesof about 700 pediatric cancer patients.Comparing the two genomes from many patientswith the same cancer has helped researchers identifygenetic mistakes that give rise to different cancers,as well as the missteps that help to fuel its growth andspread. Scientists are already working to translate thediscoveries into new ways to find and treat the disease.“This project has generated more discoveries thanwe thought possible,” says James Downing, MD,the hospital’s scientific director and the project’s leaderat St. Jude. “The data emerging are layingthe groundwork for significant improvements inour ability to diagnose and ultimately treatpediatric cancer.”
  13. 13. SETHDIXONSpring 2013 www.stjude.org/Promise 11into 46 chromosomes, half from each parent. But themajor hypodiploid ALL subtypes—low hypodiploidALL and near haploid ALL—carry significantly fewer.Near haploid ALL has 24 to 31 chromosomes. Lowhypodiploid ALL has 32 to 39.Among the newly discovered mutations in thishigh-risk leukemia, researchers found virtually allpatients with low hypodiploid ALL had mistakes in agene named TP53 that helps suppress tumor formation.More than one-third of these mutations were inherited.That was the first evidence that low hypodiploid ALLis likely a manifestation of Li-Fraumeni syndrome.The syndrome leaves affected individuals at high riskof developing a variety of cancers and makes themcandidates for stepped-up cancer screenings.Researchers reported that both low hypodiploid andnear haploid ALL are sensitive to a family of chemicalcompounds that block the proliferation of cancer cellsby switching off a key pathway in the cells. The groupincluded drugs already used to treat other cancers.Researchers are now testing these and other drugs inadditional laboratory models.The project’s scientists also found a new usefor DNA sequences previously dismissed as anuisance.In this study, scientists focused on telomeres,the repetitive segments of DNA at the ends ofchromosomes. Telomeres are widely recognized asplaying an important role in chromosomes and humanhealth. But unlike other parts of the human genome,telomeres all have the same six-letter DNA sequence.That means researchers mapping the entire genomestypically dismissed this DNA as “junk” becausetelomeric DNA could not be assigned to a particularspot in the genome.Jinghui Zhang, PhD, of Computational Biology,credits postdoctoral fellow Matthew Parker, PhD, withrecognizing a simple but powerful solution. Ratherthan worrying about mapping telomeric DNA, Parkersuggested focusing instead on the volume of telomericDNA, particularly changes between normal and cancercells. The strategy helped researchers to link mutationsin a gene named ATRX to increased telomeric DNA inpatients with a high-risk form of neuroblastoma.“The telomere findings gave us information aboutthe mutation’s impact that otherwise would have beendifficult to get,” Parker says.The latest findings came amid planning for Phase IIof the Pediatric Cancer Genome Project. The next stagewill build on the lessons and surprises revealed in thecourse of successfully completing one of the hospital’smost ambitious efforts.Downing says the next challenges include learninghow to transform this powerful technology from aresearch finding into a clinical tool.Focusing on the futureWhile St. Jude researchers work on these projects tohelp future patients with hard-to-cure diseases, Alaynaprepares to celebrate her fifth year as a cancer survivor.Donde Baldwin, Alayna’s father, recalls hours spenttraversing the halls of the hospital pushing his then-toddler daughter’s intravenous pole and coaxing her toeat. Today, Alayna has to be reminded not to run andhug a nurse who asks about Froggy, the stuffed frog whoendured every aspect of Alayna’s cancer treatment rightalong with her.“Alayna always loves coming to St. Jude; she dideven as a toddler. She still tells everyone that St. Jude isher hospital,” Marla Baldwin says. “We feel like she’swon the battle. St. Jude has given her the chance toaccomplish what she wants to in life.”lJames Downing, MD, St. Jude scientific director, discusses recent resultsfrom the Pediatric Cancer Genome Project with St. Jude oncologist TanjaGruber, MD, PhD.
  14. 14. 12 Spring 2013 www.stjude.org/PromiseWhen 3-year-old Kayden McLin celebrated theend of chemotherapy at St. Jude Children’sResearch Hospital last year, his parentsbreathed a collective sigh of relief: “No more chemo!Let’s resume our lives,” they thought. But to their horror,the next set of scans indicated a recurrence of the kidneycancer called Wilms tumor.With shaking hands, Shanda McLin immediatelypaged Rebekah Grant, a mentor assigned to the McLinfamily through the hospital’s PAIR Mentor program. Asa fellow St. Jude mom, Rebekah understands the rollercoaster of emotions that occur during cancer treatment.“Rebekah was the person to calm me down whenI was falling to pieces,” Shanda says. “She walked myhusband and me through that horrible time.”By Elizabeth Jane WalkerRebekah is one of a cadre of highly trainedSt. Jude parents who volunteer to help new arrivalstread the unfamiliar landscape of a cancer diagnosis.The program’s title offers an indication of its breadthand depth: PAIR is an acronym for Parents Assisting,Inspiring and Reassuring. The initiative, which beganmore than a year ago, offers a lifeline for parents as theyembark on a journey that can be scary, confusing andtumultuous.The mentors say they derive a sense of fulfillmentby partnering with the new arrivals.“I feel like this is my way to give back,” saysRebekah, whose son, Sam, underwent treatment forthe eye cancer retinoblastoma several years ago. “Theimmediate bond between mentor and mentee is amazing.A parent-led initiativeoffers support to newfamilies dealing withcancer diagnoses.A Partner inthe JourneyPAIR Mentor Rebekah Grant (at left) visits with St. Jude parent Shanda McLin.Rebekah is one of a cadre of highly trained St. Jude parents who volunteer to helpnew arrivals tread the unfamiliar landscape of a cancer diagnosis.SETHDIXON
  15. 15. Spring 2013 www.stjude.org/Promise 13No matter your socioeconomic status, race or religion,as soon as you tell these families that you’ve been there,it’s an instant connection. It’s vital for the patient’shealth, as well as for the parents’ mental and physicalhealth, to know that they have a partner in this journeyand that they’re not alone.”Parents helping parentsShanda and her husband, Michael, met Rebekahsoon after their arrival at St. Jude.“It was ironic, because I was telling my husbandthat it would be nice to find a parent we could talk withwho had already been through this experience,” Shandasays. “About two minutes later, a lady walked in thedoor and said, ‘We’re offering a new parent mentoringprogram. We were wondering if you’d like to enroll init.’ I signed up, and that same night, Rebekah called.We hit it off immediately. She’s always helpful. If shedoesn’t know something, she tries to find it out. Mostof all, she’s a shoulder to cry on. Whenever I need her,she’s always there.”The PAIR Mentorprogram was thebrainchild of threeSt. Jude moms whobenefited from havinginformal mentorswhen their childrenwere undergoingtreatment. “Wouldn’t itbe great if St. Jude hada formal mentoringprogram?” they asked.The hospital’s FamilyAdvisory Councilchampioned theidea, supported bystaff from across theinstitution. Parents,social workers,chaplains, physicians, nurse practitioners and other staffformed a task force. These individuals worked togetherto design the program, create training materials, andrecruit and train parent mentors. The group also outlineda series of checks and balances that protect both thementor and the mentee.Passionate partnersMentors in the program avoid offering medicalor psychological advice, according to Kathryn BerryCarter, director of Volunteer Services. “They provide agood listening ear, support, and hope and encouragementto these new families,” she says. “They’ve walked intheir shoes, and they can offer guidance.”If the family needs further support—from theirchaplain, social worker or medical team, for instance—the mentor notes the issue on an encounter form thatis completed after each session. Hospital staff can thenaddress that need.Participants in the program say the mentorsadd another layer of care and meet unique needs forsocialization and partnership. Mentors often serveas a bridge between families and their care teams,highlighting issues that might never have been revealedthrough regular hospital interactions.“The mentor is quick to recognize when a parent isstruggling emotionally and needs more support,” saysJudy Hicks of St. Jude Social Work. “During timeslike that, the mentor and mentee will discuss the bestway to alert the team and to engage the appropriateprofessional.”Meeting the needThree parent volunteers have mentored nearly20 families thus far. Although most families transitionout of the program after 12 weeks, some participatefor longer periods because of relapses or otherextenuating circumstances. Organizers hope to recruitand train additional mentors this spring, which willenable more families to benefit from the program.Patient satisfaction surveys indicate an overwhelminglypositive response from participating families andmentors alike.“It has been rewarding to see the program grow, tosee the families truly benefit, and to know that we’recontributing in a unique way to the hospital’s mission,”Berry Carter observes.Shanda says her mentor fulfills a role that cannot befilled by friends or hospital staff.“My friends at home don’t have children withlife-threatening diseases,” she says. “And althoughthe doctors and nurses are wonderful, they haven’tbeen through this with their own children, so theycan’t give the personal insights that another parent canoffer. Rebekah has walked this path, so she’s a greatresource—so cheerful and positive. There have beentimes when I was really lost; I was at the end of myrope. Talking to her helped me to hang on.”l“There havebeen timeswhen I wasreally lost; Iwas at the endof my rope.Talking to herhelped me tohang on.”
  16. 16. 14 Spring 2013 www.stjude.org/PromiseBy Elizabeth Jane Walkerand His Sibling StarsWhen 3-year-old Ingramwas diagnosed with arare brain tumor, hisbig sisters sprang intoaction, raising more than$220,000 for St. Jude.Ingram Dismuke is flying high,thanks to St. Jude and theloving support of his sisters,Lindsey (at left) and Madison.IngramIn the insular solar system of childhood cancer,siblings are sometimes the forgotten planets,wobbling in an erratic ellipse around the son ordaughter who is undergoing treatment. Parents, grippedwith a sense of panic, naturally focus their emotionalenergy on the child with cancer. When Ashley and CraigDismuke discovered that their 3-year-old son, Ingram,had a rare brain tumor, they experienced the gamut ofemotions all parents undergo under such circumstances.But the couple made a conscious decision to bringIngram’s sisters along on the journey. And what a ride ithas been.In March of 2012, Ingram was playing with hisfriends at preschool when a sudden headache reducedhim to tears. The Dismukes assumed their son had sinuscongestion or a migraine. But additional headachesfollowed, accompanied by vomiting and lethargy.Ingram’s pediatrician ordered a CAT scan. Thatafternoon, the physician called Ashley at home.“You need to go to the hospital right now,” he said.
  17. 17. Spring 2013 www.stjude.org/Promise 15“Ingram has a tumor on his brain, and he’s going toneed surgery.”Out of this worldAmid the subsequent whirlwind of tests,hospitalization and neurosurgery, Craig and Ashleybegan searching for the best place to take their sonfor further treatment. During their search, they spokewith Amar Gajjar, MD, director of Neuro-Oncologyat St. Jude Children’s Research Hospital. After thatconversation, the couple obtained a referral to St. Jude.Meanwhile, Craig’s dad contacted the CEO ofanother prominent hospital and asked him to identify thepreeminent oncologist for childhood brain tumors.“If you can find a doctor named Amar Gajjar, he’sthe best in the world. We get our treatment protocolsfrom him,” the CEO replied.“The fact that we had a doctor who knows moreabout children’s brain tumors than anybody else in theworld was an affirmation that we were going to the rightplace,” Craig says. “As a father, that was big, because itfreed me to take care of my family and not worry aboutfinding the best treatment options.”Full circleAt St. Jude, the couple discovered their sonhad ependymoma, a cancer arising from cells in thepassageways that produce and store cerebrospinal fluid.Ingram’s tumor was a type called anaplastic.“It’s a more aggressive variety of ependymoma witha lower cure rate,” Gajjar explains. Ingram’s treatmentwould include 34 rounds of carefullytargeted radiation treatments as well as fourrounds of chemotherapy.Craig says the diagnosis brought thefamily full circle.“We had been involved with St. Jude atseveral different levels,” he says. “We areclose friends with a family at St. Jude, andour kids had even made lemonade stands toraise money for the hospital. But now wewere actually going to have a child there.It’s one of those places that you think, ‘Thisplace is amazing. I hope my child never hasto go there.’ Now, all of a sudden, our sonwas the patient.”With the assistance of St. Jude ChildLife specialists, the toddler and his sistersadjusted to the unfamiliar routines ofcancer treatment. Not only did 10-year-old Madison and 8-year-old Lindsey learn about thecrucial role siblings play in the experience, but they alsoparticipated in Sibling Star Day—an annual red-carpetevent that applauds brothers and sisters for the sacrificesthey make. Craig and Ashley made a conscious effort toinclude Ingram’s sisters in other ways, as well.A family affairThe Dismuke family has always led an activelifestyle. After undergoing surgery for a serious heartproblem several years ago, Craig began training for amarathon. His goal was to complete the half marathonportion of the 2011 St. Jude Memphis MarathonWeekend. The entire family trained for the race, withthe girls riding their bikes alongside their parents, whopushed Ingram in a stroller.“When Craig ran through the St. Jude campus inDecember of 2011, he never dreamed that the followingyear he would be bringing his son here for treatment,”Gajjar muses. “It was kind of fate.”After the marathon, Madison approached herparents. “I want to run next year, and I want toraise money for St. Jude,” she said. Soon after thatconversation, Ingram received his diagnosis.“Well, we’re definitely doing it now,” Madisonannounced, “and it’s going to be Team Ingram.”Craig and Ashley thought that was a great idea.Not only would the activity give the children a way tosupport a worthwhile cause, but it would help them feelinvolved. “It would be the girls’ way to help,” Ashleysays. “They could pray for Ingram; they could love him;Ingram clowns around with his big sisters, who found a novel way to helptheir little brother.ANN-MARGARETHEDGES
  18. 18. 16 Spring 2013 www.stjude.org/Promisebut they couldn’t do anything physical to help him.”Then the girls began negotiating. “If we raise$100,000,” they said, “can we have a TV in our room?”Craig and Ashley decided that if the girls weremature enough to meet that goal, they should be able toexert discretion in their TV viewing habits.“OK,” Craig said, “but you’re not getting cable.”“Well, if we raise $200,000, will you give us cable?”The couple sighed. “Why not?”A nationwide approachMadison and Lindsey did the math: If they raised$100 a day selling lemonade, it would take them 1,000days to raise $100,000. However, if they could talk tobusiness executives, they might be able to raise moneymore quickly.The girls practiced their presentation, and their dadhelped them set up appointments. Slowly, the donationsstarted to roll in.To accelerate their progress, the girls created a videothat could be posted online. A local video producerdonated the technical expertise; the savvy youngfundraisers provided the talent.During Ingram’s first inpatient chemotherapytreatment, Craig and Ashley were anxious and concernedabout their son. “Being inpatient for chemo is oneof those tough emotional times that you really can’texplain,” Craig says. One evening, Ashley lay on thecouch in the hospital room while Craig reclined with hislaptop computer. Idly, he repeatedly hit “refresh” on thegirls’ fundraising site.“All of a sudden, the total jumped to $50,000,” Craigrecalls. The owner of the largest car dealer in Texas hadmade a $20,000 donation.“We were really excited. That lifted our spirits,”Craig continues. “Then, as people started seeing thevideo, they began sending in $100; $2,000; $5,000.It was amazing; the girls ended up raising more than$220,000.“They got a TV, needless to say.”The whole, wide worldThus far, Ingram has had a fairly smooth course oftreatment, with mild side effects from chemotherapy andradiation. With the help of physical therapy and speechtherapy, he has regained his strength and has overcomeminor articulation issues. “He’s doing great,” Gajjarreports. “He just came in for a follow-up, and everythingwas fine.”The talkative 4-year-old is enthralled by dinosaurs,swords, art and baseball.Baseball, above all.“I try to hit it, and sometimes I don’t hit it, and Iswing so hard and I can’t hit it. It comes fast, and I makemy bat go fast,” explains Ingram, words tumbling overone another in an excited rush.What else does he like? Once, during treatment,someone asked Ingram where he would visit if he couldtravel anywhere in the whole, wide world.His answer was immediate and enthusiastic:“St. Jude!” he exclaimed.View excerpts from Madison and Lindsey’sfundraising video: www.stjude.org/Promise.lA rare type of cancer of the brain or spinal cordof ependymomas in childrenoccur in the brain.of brain tumors in children areependymomas.children and young adults arediagnosed with ependymo-mas in the U.S. each year.Most children with this tumorare diagnosed before age 5.Pediatric ependymoma>90%6%200567-80%Treatmentconsists of surgery, followed by radiation therapyand chemotherapy.Survival rate for childrenwhose tumors are removedcompletely.“The fact that we had a doctor who knows more aboutchildren’s brain tumors than anybody else in the world wasan affirmation that we were going to the right place.”
  19. 19. The day of her most recent magneticresonance imaging (MRI) exam atSt. Jude Children’s Research Hospital,Kie’a Boyce seemed oblivious to smilesand curious glances as she boogiedher way across campus—from theHematology Clinic, through the hospital’swinding corridors and into the diagnosticimaging suite. The 9-year-old could notresist the urge to shake, twist and wiggle.“She danced all the way to theChili’s Care Center,” says her mother,Eva Curtis.With the squirming out of hersystem, Kie’a remained motionless for anentire hour as the MRI machine captured3-D images of tiny vessels in her brain.The exam was necessary to evaluate howwell she was responding to treatment forsickle cell disease.The little girl’s pre-scan danceroutine was not just a fun diversion—itA St. Jude support program helps children with sickle celldisease sail through their MRI scans without anesthesia.By Joyce M. HarrisKie’a Boyce doublesas patient and MRItechnologist during medicalplay with St. Jude ChildLife Specialist KatherineBailey. In a recent study,Bailey found that childrenwho underwent targetedpreparation and supportprocedures before MRItesting were eight timesmore likely to completethe test without generalanesthesia than those whodid not receive preparation.was also a specific coping mechanismdesigned to help Kie’a cope with theupcoming medical procedure. Thetailored interventions she had receivedbeforehand prepared her to stay relaxedand motionless during the hour-longscan.No-fidgeting zoneMRI scans of the brain and liverare routine for children with sickle celldisease. The key to a successful MRIscan is immobility: No squirming orfidgeting. Until recently, many youngpatients required general anesthesiabecause of their tendency to move duringlengthy MRI scans. However, childrenwith sickle cell disease are at greaterrisk for anesthesia-related complications.By avoiding general anesthesia duringexams, they experience fewer hospitaladmissions and emergency room visits.At St. Jude, children as young as5 years old have a greater chance ofcompleting their scans and avoidinggeneral anesthesia thanks to tailoredpreparation and support proceduresavailable through the hospital’s ChildLife program.Kie’a arrived at St. Jude fortreatment at age 5 after sickle cell diseasecaused frequent episodes of painfulswelling in her hands, arms and feet.“It was horrible,” Curtis recalls. “Shewas hospitalized for pain crises two tofour times a month for three or four daysat a time.”Those days are behind Kie’a, thanksto her involvement in a clinical trialthat uses the drug hydroxyurea toprevent the painful episodes. Sincearriving at St. Jude, Kie’a has learnedas much about sickle cell disease asshe has about her favorite subjects inCoping Plans for Easier ScansSpring 2013 www.stjude.org/Promise 17ANN-MARGARETHEDGES
  20. 20. 18 Spring 2013 www.stjude.org/Promiseher third-grade class. The knowledgehas empowered her to make informeddecisions about her care and treatment,specifically about her MRI experience.Preparing for the big daySt. Jude Child Life SpecialistKatherine Bailey meets with sickle cellpatients and families several weeksbefore their scheduled MRI exams todiscuss possible barriers to completingscans. Together, they develop copingplans to overcome a fear of confinedspaces, a sense of isolation during theexam, or the loud noises that occurduring the imaging process. Bailey’sgoal is to remain two steps ahead ofsuch hurdles, which sometimes hauntchildren’s active imaginations.“Kids come up with lots of scarypossibilities,” Bailey says. “Some thinkthe moving MRI table will go out theother side and fall over. They becometearful from talking about it. My job isto get ahead of their fears and anxieties.If they understand the process, theycan prepare themselves emotionallyand develop internal coping strategiesfor how to get through the proceduresuccessfully.”After identifying possible obstacles,Bailey introduces patients to the sights,sounds and essentials of MRI testing.She shares a photo book of the MRIsuite as well as pre-recorded MRIsounds. Photos of sample scans illustratehow motion can distort the imagesdoctors rely on to detect early signs ofstroke and iron overload from chronicblood transfusions.To help curb movement, Baileyencourages patients to dance and moveabout freely during training beforeguiding them through exercises that helpthem lie still. Bailey’s lucid explanationsand hands-on coping techniquesdemystify the MRI process for bothpatients and their parents.“As parents, we don’t always knowthe best way to explain the procedures tothem,” Curtis says. “It’s great that Kie’aand other patients have been trained andknow what to expect.”Practice makes perfectKie’a was all ears during hertraining and proved it during medicalplay with a model MRI machine. Thesession is Bailey’s litmus test to assesshow well patients grasp the information.“I have to strap you in,” Kie’a says,positioning the doll gingerly onto themodel MRI table. “Your head is goingto be in the helmet, and you have to bevery still so we can take pictures.”Before ending the session, patientsdesignate an adult to join them in theexam room for moral support. Theyselect their favorite movie, music oraudiobook to pass the time during theprocedure, and decide whether a squeezeball will be helpful when the urge tomove arises. Gripping the ball focusesmovement in the hand and away fromthe testing site.For Bailey, there are no limits whenit comes to showing compassion andcalming jittery nerves.“I’ve read books to patients duringMRI exams,” she says, “Hearing afamiliar voice and knowing that they arenot alone during the exam is comfortingfor many patients.”Measurable benefitsBailey’s personal touch caughtthe attention of Jane Hankins, MD, ofthe St. Jude Hematology Clinic. Asone of several investigators advancingtreatment and improving the quality oflife for patients with sickle cell disease,Hankins looked at Child Life’s tailoredinterventions with a scientific eye.“I noticed that the patients“If they understand the process, theycan prepare themselves emotionallyand develop internal copingstrategies for how to get through theprocedure successfully.”Katherine worked with were young,and they tolerated the MRI well withoutgeneral anesthesia,” Hankins says. “Isuggested we look at the data to see ifthere is scientific evidence that what sheis doing is beneficial to the patients.”The pair assessed data from 71children, ages 5–12, who had sicklecell disease. The results revealedthat children who received the shortpreparation program before MRI examswere eight times more likely to completethe scans without general anesthesiathan were patients of the same age whodid not receive the preparation. Thefindings were published in the journalPediatric Radiology.Preparation and support proceduresare commonly used in U.S. hospitals,but the St. Jude study is the first of itskind to focus on children with sicklecell disease.Risk reductionToday, St. Jude patients withsickle cell disease routinely attendBailey’s training sessions to preparefor MRI exams. General anesthesia isreserved for urgent cases or for childrenwho are unable to complete scansdespite preparation. In those instances,preventive measures are taken to preventanesthesia-related complications.“Each time we avoid puttingpatients under general anesthesia, weavoid the additional risks to patientsand eliminate the burden for families,”Hankins says. “What Child Lifehas done is a great example of thecollaboration that exists at St. Jude.”l
  21. 21. Spring 2013 www.stjude.org/Promise 19The service organization Epsilon Sigma Alpha(ESA) is part of the extended family ofSt. Jude Children’s Research Hospital. ESAhas been part of the St. Jude story since 1972, when theorganization adopted the hospital as its internationalservice project. St. Jude founder Danny Thomas visitedthe 1970 national ESA convention, where he wasmade an honorary member. For the rest of his life, heattended nearly every national ESA convention tothank the members for their work.“We were there at the beginning of Danny’sdream,” says B.J. Clark, executive director of ESA.“It always was sort of a personal relationship withDanny and with the people at ALSAC [the hospital’sfundraising organization].”Making that personal connection is at the heartof ESA, which now has more than 10,000 membersworldwide. “What makes us different from otherservice groups is that we have always done all of ourprojects with the power of friendship,” Clark says.Tom Desmond, a regional director for ALSAC,says ESA members are involved in countless St. Judeevents, and members have frequently traveled morethan 100 miles to help with fundraisers. “What setsESA members apart is their thorough understanding ofthe mission and their dedication to St. Jude,” he says.“I know that whenever we have a challenge in gettingvolunteers for an event, we have ESA members we cancall on who are willing to travel and help.”Former St. Jude patient Lindsey Tercilla discoveredthe power of ESA as a member of the collegiate chapterat the University of Florida-Gainesville, where sheserves as the chapter’s philanthropy chair.“ESA is possibly the best thing that has happened tome in my collegiate career,” says the pre-law student.For more than 40 years, ESA hasput heart into the St. Jude mission.By Leigh Ann Roman“It’s a lot of service work, and it’s hard work, but it isalso a lot of fun.”At age 2, Tercilla was referred to St. Jude fortreatment of a tumor called lymphangioma. Surgeonsremoved the growth, along with part of her smallintestine. Thankfully, the tumor was benign, and nofurther treatment was required. But the experience madea lasting impression on her family.Joining ESA and being part of the group’s February“ESA ♥ St. Jude” campaign, she says, “has been anincredible opportunity to pay it forward.”ESA’s dedication to St. Jude is matched only byits impact. “ESA is proud of our 40-year commitmentand even more proud of the more than $165 million thatwe have raised for St. Jude,” says Suzy Winters, ESAInternational Council president. “We are committed toSt. Jude not only because of our history, but because ofwhat the future can hold. We are optimistic that St. Judeis going to find cures, and we want to be around whenthat happens.” lFormer St. Jude patientand ESA member LindseyTercilla hugs CorbanCarr, who is receivingtreatment at St. Jude forrhabdomyosarcoma.The Power ofFriendshipANN-MARGARETHEDGES
  22. 22. 20 Spring 2013 www.stjude.org/PromiseResearch HighlightsOne of the largest studies of the role inherited geneticvariation plays in the treatment outcome of young acutelymphoblastic leukemia (ALL) patients has linked more than100 common differences to an increased risk of relapse.Investigators hope the discovery will lead to betterdetection of young ALL patients facing the highest odds ofrelapse and new strategies for preventing it.A substantial number of children with ALL relapse eventhough they are considered at low risk based on current factors.Of those who relapse, fewer than half are still alive after fiveyears. More accurate risk classification would help cliniciansindividualize therapy and improve survival for these patients.The study, led by St. Jude investigators, identified 134small, common variations in genes as predictors of relapse.Among those findings, scientists discovered that a singlechange in the PYGL gene was associated with nearly a four-fold increased risk of relapse.Jun J. Yang, PhD, Pharmaceutical Sciences, was firstauthor of a report on this project, which appeared in the journalBlood. Mary Relling, PharmD, Pharmaceutical Sciences chair,was senior author.“Most cancer specialists have concentrated their workon the genetic variations of the cancer cells themselves thatidentify higher-risk forms of leukemia,” Relling said. “Ourstudy shows that genetic variations that are inherited from theparents—variations that make us differ from each other—alsoplay a big role in why leukemia relapses occur in some patientsbut not others.”Jason Garrett Jr. and Payton Buford Peter create Mardi Gras-themed masks and decorations in the Patient Care Center lobbyto celebrate Fat Tuesday. In the Mardi Gras event organized bythe St. Jude Child Life program, children donned masks andparaded through the hospital’s hallways, as cheering employeesdistributed beads and high-fives.DNA variations linked to relapse riskLike a cat that loosens its grip just long enough for a mouseto escape, a protein named PUMA frees the pivotal tumorsuppressor protein p53, researchers have discovered. The escapeactivates a pathway that leads cells to self-destruct.That finding may help scientists in their ongoing efforts toharness the body’s cell-suicide (apoptotic) machinery to get rid oftumor cells.St. Jude researchers reported that PUMA acts through amechanism called regulated unfolding to set p53 loose to switchon the apoptotic pathway. The body uses apoptosis to eliminatedamaged, unneeded or unwanted cells, including emerging tumorcells. Investigators found PUMA induces partial unfolding ofScientists unfold mysteries of cell-suicide pathwayBCL-xL, a protein that normally binds p53 and keeps thiscritical tumor suppressor under wraps.The findings were published in a recent issue of NatureChemical Biology.The results build on previous St. Jude research on howapoptosis is regulated. The work also suggests that regulatedunfolding is a general mechanism that likely controlssignaling along other pathways in cells. Richard Kriwacki,PhD, of St. Jude Structural Biology, and Douglas Green,PhD, Immunology chair, are the study’s co-correspondingauthors.Masters of the maskPETERBARTA
  23. 23. Spring 2013 www.stjude.org/Promise 21St. Jude has blown the whistle on the impact that drugshortages can have on children receiving cancer treatment.Monika Metzger, MD, of St. Jude Oncology, led a multi-institutional team that studied what happens to children whomust receive substitute cancer-fighting drugs because ofnational drug shortages.The researchers found that two-year cancer-free survivalfor children, teens and young adults enrolled in a Hodgkinlymphoma clinical trial fell from 88 to 75 percent after the drugcyclophosphamide was substituted for mechlorethamine. Thepatients were receiving treatment for intermediate- or high-riskDan Medley relaxes during a recent donation at the St. Jude Blood DonorCenter. Located within the hospital, the facility helps ensure that St. Judepatients always have access to blood products.“About 1,000 blood product transfusions are performed duringa typical month at St. Jude,” said Kimberly Foster (pictured at right)of the Blood Donor Center. “Each unit of donated whole blood savesthe hospital about $250, which is what one unit costs if it must bepurchased from an outside source. Each platelet donation saves St. Judebetween $500 and $700.”For more information, visit www.stjude.org/blood-donor-center orcall 1-866-278-5833, ext. 2024.Researchers study effects of drug shortagedisease. The substitution occurred after a mechlorethamineshortage that began in 2009.No patients in the study died, but those who relapsedreceived additional intensive therapy that is associated withhigher odds for infertility and other health problems later.An analysis comparing how patients in each group werefaring two years after their cancer diagnoses appeared in theNew England Journal of Medicine. The report provides thefirst evidence of a drug shortage adversely impacting treatmentoutcomes in specific patients. St. Jude led the study for the fiveinstitutions in the Pediatric Hodgkin Lymphoma Consortium.St. Jude researchers have found evidence that chestirradiation may leave some adult survivors of childhoodcancer in danger of developing pulmonary hypertensionduring middle age.Childhood cancer survivors treated with chest irradiationor certain chemotherapy drugs are known to be at risk for avariety of treatment-related heart problems. But the study,published recently in the Journal of Clinical Oncology, is thefirst report suggesting survivors might also face higher oddsof developing pulmonary hypertension. Pulmonaryhypertension is a serious, progressive form of increasedpressure in the arteries in the lungs.First author Gregory Armstrong, MD, of St. JudeEpidemiology and Cancer Control, said pulmonary arterypressure was elevated in 25 percent of adult survivors in thestudy who had received chest irradiation.The findings suggested the survivors might be at higherrisk of pulmonary hypertension. Researchers also foundthat the risk climbed with increasing radiation dose and wasassociated with decreased exercise endurance.This finding represents important information forclinicians monitoring cardiovascular health of adult survivorsof childhood cancer.Discovery points way to revised screeningsVisiting Memphis? Give blood or plateletsSETHDIXON
  24. 24. 22 Spring 2013 www.stjude.org/PromiseHighlightsSt. Jude recently received kudos from two nationalmagazines. The hospital was recognized for the thirdconsecutive year by FORTUNE magazine as one of the “100Best Companies to Work For.” Hospital employees consistentlycite the pride they have in the St. Jude mission as a top benefit.“Our 50 years of progress has come from teamwork, andour employees know that regardless of which department theywork in, they are valued and they understand their effortscontribute directly to achieving our mission,” said Dr. WilliamE. Evans, St. Jude director and CEO.St. Jude was also named one of the best cancer careA.B. Quintanilla, lead singer of Kumbia All Stars, serenadesSt. Jude patient Yazleemar Gonzalez Santana during the11th annual Promesa y Esperanza Seminar. Latin musicartists, representatives from 15 Spanish-language TVstations and many celebrity guests joined St. Jude radiopartners for the event. Since its inception in 1997,Promesa y Esperanza has raised more than $88 millionfor the hospital.St. Jude receives national honorshospitals in the country by Parents magazine. Based onpublished research data, St. Jude has the best worldwideoutcomes in a number of pediatric cancer categories, includingacute lymphoblastic leukemia, acute myeloid leukemia andmedulloblastoma.“Being recognized is always a great honor, especiallysince our focus on some of the toughest pediatric cancers oftenmakes comparisons difficult,” Evans said. “This recognitionis a tribute to the tireless dedication of all of our physicians,researchers and staff who help families facing the mostchallenging times imaginable.”Doubling the doses of pandemic influenza vaccine andbooster shots gave children and young people infected withthe human immunodeficiency virus (HIV) enhanced protectionagainst the 2009 H1N1 pandemic flu virus, according to anational study led by St. Jude investigators. The approachsparked antibody production sufficient to protect more than 80percent of participants against the pandemic flu strain.The findings suggest the same strategy might help protectvulnerable patients in future flu pandemics. Individuals withimmune systems weakened by cancer treatment, HIV infectionor other causes are at greater risk of contracting the flu and aremore likely to require hospitalization.Patricia Flynn, MD, Infectious Diseases, is the first andcorresponding author of the research, which was published inthe Journal of Infectious Diseases.The study is one of two published recently that reflectsongoing efforts at St. Jude to develop new, more effectivestrategies to protect patients against flu infections. HanaHakim, MD, Infectious Diseases, is first and correspondingauthor of the second study, which appeared in the journalVaccine.Work continues on making flu vaccinations more effectivefor high-risk patients. Hakim said it remains important forthose who care for or live with these children to be vaccinated.“Because of their weak immune systems, if these childrenare exposed to the flu they are more likely to catch it. If theybecome infected, they are more likely to be hospitalized forcomplications than healthy children are,” Hakim said.Scientists aim to protect vulnerable patients from fluOn-stage serenadeSETHDIXON
  25. 25. Spring 2013 www.stjude.org/Promise 23Like Goliath’s David, Gretchen Witt is facing a giantand powerful adversary—but unlike the biblical hero,Gretchen isn’t armed with a slingshot. Instead, she’swaging her battle with an army of what she calls “GoodCookies.”Gretchen and her husband, Larry, are co-founders ofthe nonprofit foundation Cookies for Kids’ Cancer. Theinspiration for the organization came when their son Liam hadneuroblastoma, a cancer of the nervous system.Watching Liam battle cancer made Gretchen determined todo something.“Learning that pediatric cancer kills more children thancystic fibrosis, muscular dystrophy, AIDS, asthma and juvenilediabetes combined was shocking to me,” she says. “How couldI sleep at night if I didn’t at least try to do something to help?”The organization raises awareness while helping supportthe research of St. Jude Children’s Research Hospital.“I am honored when a patient’s family gets involved,because they know the pain of pediatric cancer, but if I canget someone interested who has no connection to childhoodcancer, it means we’re getting the word out to a broaderaudience,” Gretchen says.Cookies for Kids’ Cancer began in 2007 with Gretchen’sidea to host a larger-than-life cookie sale, selling 96,000cookies. The organization blossomed by offering gourmetcookies and gifts as well as by inspiring individuals to hostbake sales and fundraisers. To date, Cookies for Kids’ Cancerhas granted nearly $4 million to St. Jude and other institutionsfor pediatric cancer research.So, why cookies?“We wanted a concept that gives everyone a simple way tojoin the fight, and who doesn’t love cookies?” Gretchen says.“Cookies for Kids’ Cancer has become much more about thepeople, the Good Cookies, fighting for improved treatments forchildren every day.”The organization’s Medical Advisory Board has awardedSt. Jude three sizeable grants for research targeting acutelymphoblastic leukemia, medulloblastoma and neuroblastoma.The board identifies critical research needs across 12 distincttypes of pediatric cancers to help bring the most promisingtherapies to clinic as quickly as possible.Gretchen says she feels a connection to St. Jude founderDanny Thomas. “It’s inspiring how he prayed to St. Jude andreally put his heart out there to take action,” she says.Liam Witt lost his battle with neuroblastoma in Januaryof 2011 at age 6. The Witts honor his memory by continuingtheir fight through the funding of lifesaving work like that ofSt. Jude.“St. Jude is the epitome of what’s right in the world ofpediatric cancer,” Gretchen says. “It is truly focused on thewell-being of the whole family.”Gretchen is modest about all that her organization hasaccomplished, saying, “Baking 96,000 cookies is nothingcompared to what Liam went through.” Her goal, she says, is tohelp people understand that if she can fight cancer with cookies,they can do something, too. “I just want people to be GoodCookies. I want them to care about this cause and realize thatthere is something they can do about it.”lOne ToughCookieSweet treats become a weapon in thebattle against childhood cancer.Gretchen Witt has parlayed her love for cookies intomore than $4 million for pediatric cancer research.PHOTOCOURTESYOFSHUTTERSTOCK.COMBy Kerry Healy
  26. 26. 24 Spring 2013 www.stjude.org/PromisePers pective By Hill Harper Child’s PlayWhen I visited St. Jude Children’s Research Hospitala couple of years ago, I was blown away by howcreatively the hospital is organized. The environment iswelcoming and loving, from the moment you walk through thedoors.But my most memorable moment came during a gameof Jenga®—the game where you remove pieces of wood froma tower until everything falls down. I was playing with alittle girl who was a patient at the hospital. We were talkingabout what she was going through—and we were laughingand joking and having fun. This young lady was actually areally good Jenga player—much better than I was. Because Ihad recently been diagnosed with thyroid cancer, I knew howdifficult and frightening and life changing the experience couldbe for an adult. So I couldn’t imagine how courageous andstrong this little girl and her parents had to be. It just openedup my heart and blew my mind away.Playing Jenga with this young woman at St. Jude remindedme of one of my favorite quotes by Dr. Martin Luther KingJr.: “We are all tied together in a garment of mutual destiny.”To me, that means no matter how well I may be doing inHollywood or no matter how well CSI: NY may do in theratings, if there’s a young girl at St. Jude who’s not doing well,then I’m not doing well.We’re all in this together.The work that St. Jude is doing and the people whosupport the hospital’s mission represent that conceptbeautifully. And I couldn’t be happier to be a proponent of that.I was in the midst of writing The Wealth Cure, a bookabout financial literacy, when I was diagnosed with my thyroidcancer. It really made me focus on what creates true wealthin our lives. At the end of the day, what I discovered throughmy journey with cancer was that true wealth is our health. Ourfuture is our children. If we buy into this idea that health ismost important, then figuring out a way to solve the biggesthealth challenges facing our children should be our No. 1mission. That’s exactly what St. Jude does. And that’s whereour focus and our support should go first and foremost. I’mproud to support St. Jude. That’s why I’m going to polish upmy Jenga skills … and then return for another visit.An alumnus of Harvard Law School, actor Hill Harper isthe author of four books. He portrays Sheldon Hawkes, MD, inthe CBS drama CSI: NY.lActor Hill Harper plays a game of skill, coordination andconcentration with St. Jude patient Courtney Davis.A simple game played with a St. Jude patient evokesdeep emotion and a determination to help.JUSTINVENEMAN
  27. 27. ©2013ALSAC/St.JudeChildren’sResearchHospital(12927)St. Jude patient Kayla:California girlThe very fact that you are holding this magazine is proof that you care. In fact, it is becauseof you that kids like Kayla will have a fighting chance to experience the beautiful momentsof their lives. Yes, because of you. Your legacy gift is a powerhouse in terms of research andcare. It will allow researchers and doctors to continue to peel away the layers of pediatriccancer and other deadly childhood illnesses. Let this be your legacy: that one day no childwill die in the dawn of life. Join St. Jude in finding cures and saving children.Begin your legacy today. Call 800-910-3188 or visit stjudelegacy.org.Your legacybegins here.
  28. 28. Non-Profit Org.U.S. PostagePAIDPermit No. 187Hickory, NCCHANGE SERVICE REQUESTED262 Danny Thomas PlaceMemphis, TN 38105-3678Patients, siblings and ChildLife staff enjoy the first SpringFling semi-formal dance,which was held in the DannyThomas/ALSAC Pavilion. Theevent, held in conjunctionwith Mardi Gras, was tailoredexclusively for 10- to 14-year-old patients and their siblings.SETHDIXON