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PromiseA publication of St. Jude Children’s Research Hospital Winter 2003A publication of St. Jude Children’s Research Hospital Winter 2003 Promise

PaintingtheTownpage 11

PaintingtheTown page 11

St. Jude Children’s Research Hospital was founded by the

late entertainer Danny Thomas. It opened February 4, 1962. The hospital

was created because of a promise Danny made during the depression era to

St. Jude Thaddeus, the patron saint of the hopeless.

“Show me my way in life,” Danny prayed. In return, Danny promised to build

St. Jude Thaddeus a shrine. That shrine became a hospital that would treat

children regardless of race, color, creed or their ability to pay. This remarkable

event also inspired the name of this magazine,

Promise.

St. Jude Children’s Research Hospital, Memphis, Tennessee

Features4 The Tour des Kids

Taking it to the streets for St. Jude

5 Investments for LifeJohn and Mildred Johnson’s legacy

6 Back on TopSt. Jude patient Robert Woodward

11 Painting the TownMiracles and a magical mural

16 Kinder, Gentler ResearchNurses conducting research

20 Teaching Old Drugs New TricksA new AML protocol at St. Jude

Highlights2 Achievements and events

Perspective24 Tara Lipinski

Going for the Gold

Promiseis a quarterly publication of theDepartment of Public RelationsSt. Jude Children’s Research Hospital332 N. LauderdaleMemphis, Tennessee 38105

St. Jude Children’s ResearchHospital’s mission is to find cures forchildren with catastrophic diseasesthrough research and treatment.

Hospital DirectorArthur W. Nienhuis, MD

ALSAC National Executive DirectorRichard C. Shadyac

ALSAC/St. Jude Vice President ofCommunications and Public RelationsJerry Chipman

Director of Public RelationsJudith W. Black

ALSAC Director of CommunicationsGeorge Shadroui

Publications ManagerLois M. Young

EditorElizabeth Jane Walker

Art DirectorJessica W. Anderson

Photo EditorPhillip Murphy

PhotographersDean Atkins, Timeless ImagesSeth DixonLaura HajarEvanne NewmanCindy Pederson

Contributing WritersTanuja ColettaAlicia H. MatthewsScott Wills

Guest AuthorTara Lipinski

Editorial Advisory BoardBonnie Cameron Leslie Davidson Pat Flynn, MD Mark Hendricks Lisa HillMarc Kusinitz, PhDDana Marshall, PhDPhil McCarty Carlos Rodriguez-Galindo, MDAnn Smith Sally Wiard John Zacher

PromiseA publication of St. Jude Children’s Research Hospital Winter 2003

St. Jude Children’s Research Hospital is an equal-opportunity employer. For inquiries aboutstories in this publication, call the Public Relations department at (901) 495-2125 or e-mailelizabeth.walker@stjude.org. Visit our Web site at www.stjude.org/Promise. Articles and pho-tos may be reprinted with permission. ©2003. On the cover: St. Jude patient Valery Youngtouches the fairy that she inspired in the hospital’s new mural. Photo by Laura Hajar.

New den for Grizzly cubsPlayers and owners of the Memphis

Grizzlies NBA team donned hardhatsand wielded shovels during recentgroundbreaking ceremonies for ashort-term stay residence at St. Jude.

The Memphis Grizzlies House will

provide a home-like environment forpatients and families who are undergo-ing treatment at St. Jude from one toseven days. Out-of-town families arecurrently housed in a nearby hotel forshort-term visits.

The Grizzlies pledged $5 million

toward construction of the $10 millionbuilding, which is scheduled for com-pletion in December 2003. The70,000-square-foot structure willaccommodate up to 100 families at atime. There will be no cost to familiesstaying at the residence, which will bethe only housing facility on the hospi-tal campus.

Sickle cell grantSt. Jude will receive a multi-million

dollar, five-year grant to expand itssickle cell disease program. The hospi-tal is one of 10 federally funded com-prehensive sickle cell centers to receivea grant from the National Heart, Lungand Blood Institute of the NationalInstitutes of Health. When funded inApril, the St. Jude grant is estimated toexceed $9 million.

The grant includes five local proj-ects focusing on stem cell transplanta-tion, pneumococcal infection in sicklecell patients, combination drug thera-py, gene therapy and molecular biologyof hemoglobin development.

A multi-center project will examinethe effectiveness of the drugs hydrox-yurea and magnesium to combat clinical complications of sickle cell disease.

c-Myc and tumorsSt. Jude researchers recently discov-

ered that the c-Myc gene is essentialfor tumor development. Scientists havelong recognized that c-Myc’s effect oncell growth can contribute to cancerdevelopment. But they have also sus-pected that c-Myc plays roles in theprogression of malignancy.

A team including John Cleveland,PhD, and Troy Baudino, PhD, ofBiochemistry discovered that c-Myc is

Winter 2003 Promise 32 Promise Winter 2003

Highlights essential for the production andgrowth of blood vessels in tumors.Researchers may be able to use thisinformation to cut off the blood supplyto tumors and thwart tumor growth.The study was published in theOctober 2002 edition of Genes &Development.

Proteins and hearingScientists have discovered that

prestin, a cell membrane protein, is themotor protein that allows soundamplification crucial to mammalianhearing. The study, led by Jian Zuo,PhD, of Developmental Neurobiology,was published in the September 2002edition of Nature.

The inner ear contains an amplifierthat increases its sensitivity to sounds.The amplification depends on theouter hair cells in the cochlea changingtheir lengths in response to voltagechanges. Zuo and his colleagues foundthat prestin enables these cells tochange length. Mutations in the prestingene may cause human deafness.

The St. Jude discovery will help sci-entists who study deafness and want tobetter understand the mechanisms ofhearing and deafness.

Tracking a killerSt. Jude researchers have been

tracking a killer strain of influenza andhave identified the strategy it used toslay its victims. This virus uses one ofits genes to circumvent the host’simmune responses.

A team of scientists led by RobertWebster, PhD, of Infectious Diseaseshas been studying a deadly influenzavirus that emerged in 1997. Webster,Sang Heui Seo, DVM, PhD, and ErichHoffmann, PhD, discovered that thevirus’ aggressive tendencies were linked to the NS gene. This geneencodes a protein that helps the virusavoid infection-fighting proteins produced by the body.

The discovery will help researcherswho study influenza viruses and thosewho develop drugs to fight the flu.

The study appeared in the August2002 edition of Nature Medicine.

National honorsArthur Nienhuis, MD, and William

Evans, PharmD, are among the newestmembers of the Institute of Medicine,a prestigious branch of the NationalAcademy of Sciences. Nienhuis is thedirector of St. Jude, and Evans servesas the hospital’s scientific director anddeputy director.

Members are chosen for their sig-nificant contributions to health andmedicine or to related fields. The insti-tute’s members devote a significant

amount of volunteer time as mem-bers of committees, which engage in a broad range of studies on health policy issues.

“It is an honor and an opportunityto provide advice and service to thegovernment and other policy-makingbodies,” said Nienhuis.

Endorse their futureWhether paying bills or buying gro-

ceries, consumers are telling a story ofhope when they use these new checksdesigned by St. Jude patients. Producedby CheckBoxes Direct, the specialchecks cost $22, with $11 of the pur-chase price returning to the hospital.

To order a set of St. Jude checks,log onto www.stjude.org/checks or call the CheckBoxes Direct customer service line toll-free at (866) 622-7136.

Arthur Nienhuis

William Evans

In the arms of 6’10” Memphis Grizzlies forward Drew Gooden, St. Jude patient DavidCooper has a birds-eye view of the Memphis Grizzlies House groundbreaking festivities.

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The late John Johnsonof Castile, NewYork, spent manyyears as a farmer

and postal clerk beforebecoming what his friendsdescribe as an “astuteinvestor.” He was not only aninvestor in financial matters,but he and his wife, Mildred,also sought to help those lessfortunate in life. They invest-ed in their local communityand in various charitablecauses. St. Jude Children’sResearch Hospital was one ofthose investments.

It was an investment theybelieved in so much that thecouple bequeathed $5 million tothe hospital following John’s deathin 2000. Mildred had passed awayin 1999.

The Johnsons made their firstdonation to St. Jude in 1983 afterhearing about the institution’s life-saving work. From that point on,they made ongoing donations to thehospital. Their commitment wassuch that each year during vacation,they stopped in Memphis to visitSt. Jude. These visits reminded thecouple why their donations wereso important.

Harold Parker, executor of theJohnson estate and one of John’shigh school friends, describes theJohnsons as generous people who

were always willing to give whatthey had to make life better forothers.

“John and Mildred never hadchildren,” says Parker. “Because theyhad none of their own, they dedicat-ed their lives to helping children inneed. They also understood howimportant research is in helping savethese children.”

That’s why their $5 million estatedonation to the department ofDevelopmental Neurobiology atSt. Jude is so appropriate.

Scientists in DevelopmentalNeurobiology analyze how the brainand nervous system develop andfunction. The goal of this research isto understand abnormalities that

might cause cancer and othercatastrophic neurologic dis-eases. The Johnsons’ gift willhelp further necessary researchin this area.

“The substantial bequestfrom the Johnson estate pro-vides long-term support for theresearch efforts in the depart-ment of DevelopmentalNeurobiology,” says depart-ment Chair Tom Curran, PhD.“We are using these resourcesto launch imaginative initia-tives in translational braintumor research designed to pio-neer new therapeutic strategiesfor this devastating disease.”

Because of the Johnsons’many gifts and their overwhelminggenerosity to the children of St. Jude,the Developmental Neurobiologywing on the second floor of theDanny Thomas Research Center hasbeen dedicated in their memory.Parker attended the dedication cere-mony and unveiled the plaque thatpays tribute to his friends.

Thanks to the support of peoplelike the Johnsons, St. Jude will con-tinue to make strides in research andtreatment of children suffering fromlife-threatening diseases.

To learn more about ways to give,call the Gift Planning department at(901) 578-2081, or toll-free at (800)877-5833, ext. 2081.�

BY JO E HA N N A

AGerman cyclist recentlybraved the blazing Southernsun, scaled America’s steepest

slopes and pushed his muscles to themax as he pedaled more than 10,000miles in the name of St. JudeChildren’s Research Hospital. “Ineverything we do,” said AlfredGünthör as he sat in the DannyThomas/ALSAC Pavilion this pastAugust, “we want to cause some-thing [to happen] in a positive way.”

Günthör tried to do just that bytraveling across the North Americancontinent to raise money and aware-ness for St. Jude.

“My heart is beating for chil-dren,” says Günthör, who hails fromFriedrichshafen, Germany. “They areour future.” To help ensure thatsome children would have thatfuture, Günthör spent six monthspedaling across the country, raising

$1,500 in donationsand, more important-ly, touting the St. Judemission.

Günthör’s trekbegan April 11 inPeoria, Illinois,

Friedrichshafen’s sister city and thelocation of a St. Jude affiliate. Hetraveled through 40 states, Mexicoand Canada before returning toPeoria Sept. 8.

Günthör’s 2002 bike tour was his second ride for charity. In 2001,he had pedaled 5,441 miles acrossEurope for other charities. Followingthe September 11 terrorist attacksthat year, he wanted to do some-thing to help people in the UnitedStates. Because the American peo-ple’s generosity had swelled the cof-fers of charities assisting victims ofthe terrorist attacks, Günthör turnedhis attention to another worthycause—St. Jude. “My goal is to raise funds and awareness,” Günthörsaid. “[I want to] speak to morenewspapers, do more interviews.More interviews means the messageis spread.”

By the time he had peddled toMemphis in late August, Günthör

had already granted 68 interviews tonewspaper reporters. “If one personreads the newspaper and maybespeaks to others … It is impossibleto imagine how far this reaches,” he said. Although the moneyGünthör raised will help offset thecosts of treating St. Jude patients,the cyclist knows that the attentionhe has drawn to the hospital willhave the greatest impact. “In a way,I save lives,” Günthör observed.“And other lives are touched in apositive way.”

Günthör was greeted with ahero’s welcome when he returned to Peoria in September, escorted into town by a horde of bicyclistsknown as the Illinois ValleyWheelmen. After accepting awardsand talking about his experiences on the American highways, hereturned home to GermanySeptember 14.

“Alfred Günthör’s dedication tothe children of St. Jude is a mar-velous display of kindness,” saysDave McKee, chief operating officerfor ALSAC, the hospital’s fund-raising arm. “We truly appreciate his embracing our dream here atSt. Jude.”�

Winter 2003 Promise 54 Promise Winter 2003

The Tourdes KidsA German bicyclist climbs mountains,

traverses plains and grants interviews in

a fund-raising and awareness-building

ride for St. Jude.

B Y A L I C I A H . M A T T H E W S

JOHN AND MILDRED JOHNSON GAVE THEIR MONEY AND THEIR HEARTS TO

ST. JUDE, AN INVESTMENT THAT WILL SAVE LIVES FOR YEARS TO COME.

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6 Promise Winter 2003 Winter 2003 Promise 7

In 1999, Robert Woodwardbecame the first boy in historyto sweep all Class 7 events inthe Oregon state gymnasticschampionships. Soon afterthis triumph, the diminutive

9-year-old set his sights on a loftiergoal: the U.S. Olympic team. Heknew that he would have to log tensof thousands of hours in the gym,fine-tuning his muscles and buildingsuper-human stamina. He expectedto twist, vault, stretch and somer-sault across the challenges and com-petitors in his way.

Then Robert met an obstacle moreunyielding than the pommel horse andmore unpredictable than the rings: arare brain tumor called ependymoma.

A whirlwind of winsThe terms “mediocre” and “aver-

age” have never been used to describeRobert, but the labels “genius,” “tal-ented” and “driven” have beenapplied by many of his admirers. Bornin Korea and raised in Maryland andOregon, Robert was counting to 40and reciting the alphabet by the time

he turned 2. While most of his peerswere stacking blocks and playing inthe sand box, Robert was alreadyexhibiting intense intellectual curiosi-ty, uncommon determination and out-standing athleticism. His parents werenot surprised when, in the third grade,Robert scored in the top 1 percent instate-administered intelligence tests.

Recognizing that their son wasphysically and intellectually adroit, Juand Woody Woodward made a com-mitment to encourage his interests.Robert has taken dozens of classes inareas ranging from swimming andfencing to high-powered rocketry andanimation. Other moms might findshoes and toys scattered on theirkitchen floors; Ju is more apt to find a7-foot-tall rocket standing in the mid-dle of hers. “If we can scrape themoney together to let him try whathe’s interested in, then we do so,”says Woody. “If he likes it, we let himdecide whether he wants to continue.”

When Robert was 5, he decided tostudy taekwondo; two-and-a-halfyears later, he had earned a black beltand had won numerous gold medalsin state and international competi-

BackTop

Robert Woodward stood at the pinnacle of

success in both academics and athletics. Then

a brain tumor called ependymoma tested his

bravery, strength and determination.

BY ELIZABETH JANE WALKER

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A nine-time Oregon state gymnastics champion, 13-year-old braintumor survivor Robert Woodward has Olympic aspirations.

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8 Promise Winter 2003

tions. With aplomb and a deepcalm, he competed in front of20,000 cheering people inan NBA arena. “You can’tbelieve how incredible heis about focusing,” mar-vels his dad. “Mostkids get real nervouswhen they compete,but Robert gets betterwhen he competes. Herises to the occasion.”

At age 6, Robertbegan studying piano,whizzing through the musi-cal curricula at such velocitythat people began to whisper“virtuoso” when he attacked thekeys. But he decided that piano wasnot his passion, so he changed direc-tion. He channeled his musical ener-gies toward classical guitar, an instru-ment that has intrigued and inspiredhim ever since.

Robert took a similar attitudetoward taekwondo; in spite of hisphenomenal success in the martialarts, he opted to pursue gymnastics,where he could capitalize on hisinnate flexibility, agility and preci-sion. Like a child layering wintercoats, he constantly piled on moreactivities—playing soccer and chess,choreographing elaborate aerial bal-lets for stunt-kite competitions andwielding bows and arrows withfinesse. In July of 2000, Robertentered his first archery tournament,the Oregon state championship. Onceagain, he prevailed—vanquishing allopponents to win his division.

A new opponentThe highly competitive fourth-

grader accrued a seemingly endlessriver of blue ribbons, trophies andgold medals, winning the all-around,or top honors, in every gymnasticsmeet. Then, early in 2000, he began to lose his edge. The differ-ences were subtle, practically imper-ceptible, but they affected his scores.

“At the beginning of the season, hewas winning every all-around,” saysWoody, “but by the end of that sea-son he didn’t get a medal in any ofthe seven events at the statewide com-petition.”

In late summer, Robert began tosuffer occasional dizziness duringgymnastics practice. In early fall, hebegan having episodes of nausea andvomiting. When Ju and Woody tookhim to the local emergency room, thedoctors found nothing wrong andsent him home. The symptoms esca-lated, culminating in a weeklong bout

with what Robert assumed wasthe flu. This “flu,” however,

was accompanied bymonolithic headaches. “Ijust felt like I wanted topull my hair out or kicka hole through the wallor something likethat,” says Robert.

This time, a visit tothe doctor yielded adefinitive diagnosis: a

tumor was growing inRobert’s brain. “First, I

asked my dad, ‘Does thatmean I have to have brain

surgery?’ He said, ‘Yeah.’ Andso we both cried a little,” recalls

Robert. But the 10-year-old did notexpend much effort in mourning hissituation. With characteristic focus,serenity and determination, he mar-shaled his inner resources andapproached the challenge head-on.

Robert’s ependymoma was suc-cessfully removed by surgeons at ahospital in Portland, Oregon.Afterward, the physicians recom-mended that Robert undergo radia-tion treatment, and they listed its side effects. “They were talkingabout things like permanent hearingloss, stunted growth and loss of mental capacity,” says Woody. “Oneof the side effects was that the radiation could cause cancer.”Unable to accept that their brilliantand talented son must undergo thispotentially devastating treatment, the Woodwards began researchingradiation options.

One name kept reappearing intheir Internet searches: St. JudeChildren’s Research Hospital.

Technology and techniqueOn the Internet, Woody read

about Thomas Merchant, DO, PhD,of the St. Jude Radiation Oncologydepartment, and the RT-1 protocol.Through this scientific treatmentplan, Merchant and his colleagues are

testing a new way of delivering radia-tion treatment to pediatric braintumor patients.

As radiation destroys tumor cells,it can also damage nearby normal tissues. Physicians in Oregon wereplanning to treat Robert convention-ally, radiating a moderately wideregion of his brain. At St. Jude, clini-cians would use magnetic resonanceimaging (MRI), computed tomogra-phy (CT) and other measures to pinpoint the exact area—the tumorbed and a small margin around it—that must be treated. Then theywould use a technique called 3-Dconformal radiation therapy to focusradiation beams from several direc-tions onto that area.

“The best way to picture 3-D con-formal radiation is to imagine thespotlights or searchlights outside amovie theater at night,” explainsLarry Kun, MD, chair of RadiationOncology. “Where the beams of lightoverlap or intersect, it’s brighter. That

bright beam where they intersect iswhat you’re doing with 3-D confor-mal. You’re entering multiple trajec-tories, and the dose occurs within theboundaries where they overlap.That’s what makes it 3-dimensionallyconform to the tumor.”

By limiting the radiation doseapplied to the normal tissues, St. Judeclinicians can avoid many harmfulside effects. With the RT-1 protocol,they are treating a much smaller areathan has been treated in the past.“You don’t want to treat the tumorarea too tightly, because you mightactually miss some of the area thatneeds to be treated,” Merchant says.“So we’ve determined the smallestvolume that can be safely treatedwithout compromising tumor con-trol.” The protocol includes extensiveevaluation before and after therapyto identify the treatment’s impact onsuch areas as school performance,growth and development, hearingand neurological functioning.

Merchant says the technologyused in the RT-1 protocol is widelyavailable, but the experience levels at St. Jude are unrivaled. “The capa-bility is there at other places, but the experience is not,” he says. “TheRT-1 protocol is one of the largestsingle-institution brain tumor studiesever conducted. We have treated 185children in just five years. With a raretumor like ependymoma, even thelarger centers will treat only one ortwo children a year. Over the courseof five years, we’ve treated 80.”

Robert underwent six-and-a-halfweeks of radiation treatment at St. Jude. As usual, he practiced goodtime management, mastering a newskill between appointments. He hadalways wanted to learn to juggle;now he had the time to learn.

“He’s an unbelievable juggler,”says Christy Bosley, RN, RadiationOncology nurse. “He’s one of those children who makes up hismind he wants to do something

Robert enjoys choreographing elaborateaerial ballets for stunt-kite competitions.Here, he attends an international kite festivalin Long Beach, Washington.

Facing page: Six weeks after returning homefrom St. Jude, Robert entered a five-stategymnastics competition, winning the pommelhorse event. On his next visit to St. Jude, hepresented his blue ribbon to ThomasMerchant, DO, PhD, of RadiationOncology. Robert is also an Oregon statechampion in archery.

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and it just sort of happens.” Robert makes things happen. A

week after he returned home from St. Jude, he braved residual dizzinessand nausea to resume practice. Fiveweeks later, he entered a five-stategymnastics tournament and won thepommel horse event. When hereturned to Memphis for his nextappointment, he presented his blueribbon to Merchant.

That blue ribbon represents the

success of the RT-1 protocol—notonly to Robert, but to many otherchildren with life-threatening braintumors. “Robert’s doing fantastic,”Merchant says. “And he’s not theexception. Most of the kids on RT-1are doing as well after the treatmentas they were before.”

Looking forwardToday, Robert has resumed his

frenetic schedule, constantly setting,reaching and exceeding new goals.An accomplished classical guitarist,he has attracted the attention of suchluminaries as Lily Afshar, PhD, oneof the United States’ most accom-plished classical guitarists. “He’s very

serious about his guitar,” saysAfshar, who adds that she was“very impressed” with Robertwhen she met him at a nationalguitar festival last year. In addi-tion to the guitar, Robert also islearning to play the alto saxo-phone and the oboe. He was thelead programmer and team cap-tain in a robotics tournament lastyear; he received the 2002President’s Gold Medal for aca-demic achievement; and he is cur-rently plying his skills at wood-working and wood burning.

“What’s impressed me the

most about Robert has been his motivation to continue workingreally, really hard,” says SusanChattin-Helton, EdS, Robert’s psy-chological examiner at St. Jude. “Henever let the fact that he had a braintumor or was going through treat-ment get him down. Robert’s ownmotivation has played a key role inhis recovery.”

In spite of all his activities andaccomplishments, Robert still findstime to say “thank you” to St. Jude.When his school participated in theSt. Jude Math-A-Thon®, Robert creat-ed a videotape chronicling his radia-tion treatment. He visited each class-room, explaining why the childrenshould participate in the fund-raisingevent. The school tripled its level ofparticipation that year.

Woody becomes emotional whenhe contemplates his family’s experi-ences at St. Jude. “St. Jude is a heaven on earth,” he says, his voicecracking with unshed tears. “I don’tknow where we’d be without thepeople there. Truly there are miraclesin this world, and my son is one of them.”

What is left for Robert to accom-plish, now that he has reclaimed hisfuture? “My dream is to go to theOlympics in gymnastics,” he says.Robert is well on his way to meetingthat goal, after winning two events inthe 2002 Oregon State GymnasticsChampionships. And after theOlympics? “I want to be a roboticsengineer,” he says, “and a concertguitarist on the side.”

If Robert Woodward makes his mind up to do it, be assured: it will happen.�

Daydreams and imagination can gently carry travelersfar from the humdrum, workaday world. At St. JudeChildren’s Research Hospital, a stroll along the sec-

ond-floor corridors now has that same power, whiskingviewers to worlds of whimsy and delight. Adorning thewalls is a 4,800-square-foot mural. But to St. Jude patients,

Paintingthe Town

No tour bus is necessary for this magical

jaunt through the River City. In a mural that

dances across the walls of the Patient Care

Center, Memphis streets and landmarks

resonate with the wonder of childhood and

the power of miracles.

B Y S C O T T W I L L S

P H O T O S B Y L A U R A H A J A R

Like any teenager, Robert (second from right)occasionally finds time to relax and eat junkfood with his buddies (from left), Kellan andKameron Kadooka and Greg Bartle.

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Robert, who plays alto saxophoneand the oboe, is already anaccomplished classical guitarist.

“With a rare tumorlike ependymoma,even the largercenters will treatonly one or twochildren a year.Over the course offive years, we’vetreated 80.”

Artist Claudio Pérez-León

Winter 2003 Promise 13

families and caregivers, this muralrepresents more than a merepainting; it is a once-in-a-lifetimeopportunity to physically walkthrough a three-dimensionalstorybook.

Every good storybook has abeginning, a middle and an end.This particular “once upon atime” involves a man with only two things: a paintbrush and a quest to reach out andembrace the children and com-munity of St. Jude.

“I felt incredibly excited,” saysClaudio Pérez-León, recalling the day when he was approachedto work on the mural project.“For many years I had heard how great St. Jude was, and itwas an amazing opportunity todo something for both kids and parents.”

Located in the center of thehospital’s second level, the com-pleted mural represents the first of three phases. When the pro-ject’s second and third phases are finished, murals will alsoextend across 14,000 square feetof walls in the floor’s north andsouth wings.

The content and quality of the

forthcoming artwork will havea more urban and suburban resonance than that of the firstphase. The last of the murals is scheduled for completion inthe summer of 2003.

A rough sketchA scholar of architecture and

fine arts, Pérez-León initially metwith hospital architects and con-struction staff to establish themural’s objectives. The enormousundertaking is part of an even larg-er renovation project designed tomake the hospital’s Patient CareCenter more “child friendly.”

Pérez-León, president ofArtimpact Inc., envisioned themural as a stimulating series ofpaintings that, seamlessly integrat-ed, would give spectators a sense ofplace, character and community.With its diverse culture and her-itage, Memphis offered the perfectbackdrop for such a project.

First, Pérez-León created scaled,color drawings that incorporatedspecific landmarks such as theMemphis Zoo, the HernandoDeSoto Bridge and the musical idio-syncrasies of Beale Street. Becausethe artist considered the Memphisskyline to be an important aspect,the landscape displays architecturalreferences such as the compellingMorgan Keegan tower and thegleaming Pyramid arena.

During the design phase of theMemphis city streetscape, Pérez-León introduced a novel method fordetermining what elements shouldappear in the final design. A mas-sive sketchbook in the hospital’ssecond floor lobby provided avenue for patients, their parents and families to jot suggestions andcomments. Pérez-León was amazed at the

number and quality of contribu-tions. “There was a strong interac-tive component within this project,”he says, “not only verbally through

direct communication with the kids,but also via those people who feltmore comfortable writing down sug-gestions.”

Some of the suggestions from fam-ilies were practical: “Needs a motor-cycle on the bridge!” A few werepurely personal preference: “Pleasepaint over the eyes on the bird’s bel-lies—they’re scary!” Other commentswere charmingly profound: “We allneed a little sunshine.”

Spreading sunshineSunshine is just what the families

have received. Completed in October 2002, the mural’s first phaseradiates brilliance and warmth, invit-ing viewers to step into a land ofcolor and fantasy. The painted walls are a window to a child’s imagi-nation—animals, people and land-scapes depicted in exquisite detail, all voluminously awash with a wide spectrum of color.

Pérez-León assembled a team of

talented artists to help him bring hisdesigns to life. “It has been a greatopportunity to get other artistsinvolved,” observes Pérez-León.“Without their help and imaginationthis project would not be half asgood.” Memphis artists Jeff Unthank,Mary Norman, Jan Hankins, MelissaDunn, Sarah Hiles, Eric Swartz,Dylan Collier and Judith Dierkesspent many hours working on themural, stopping occasionally to chat with St. Jude patients and sib-lings. Some youngsters offered theirartistic advice; others even helpedwith the painting.

When 12-year-old Joseph Deanwas an inpatient last summer, hecombated boredom by helping theartists. “I painted some leaves on oneof the trees, I outlined some thingsand I drew some other stuff,” hesays, proudly. He’s quick to add thatthe experience did not, however,inspire him to pursue a career in art.“I still want to be a professionalbaseball player,” he declares.

John Haghayeghi, the 14-year-oldbrother of St. Jude patient HannaHaghayeghi, spent 100 hours volun-teering on the project.

“I taped walls and painted roofsand skies and roads,” John says. “Itwas fun, but it was tiring.” By work-ing on the project, the altruisticyoung man was able to acquire valu-able work experience. Pérez-Leónwrote a letter that the career-oriented teen plans to use in his col-lege applications. “It also gave me a chance to help out St. Jude, because my sister was there,” John explains.

Mermaid tails,fairy wingsMermaids do not frequent the

Mississippi River, but at least oneaquatic princess splashes her tailwithin the mural. Artists were sur-prised to find that some of theyounger St. Jude patients often drewmermaids when creativity blossomedin the playroom. Morgan Butler

“When art has the capacity to shiftchildren’s focus from symptom

discomfort to their own imaginations, it is a gift from God.”

The colors and imagery usedthroughout the mural highlight theimportance of escapism and imagina-tion—two activities that childrenhold onto and call upon in times ofneed. That is why the mural containsUFOs and aliens; airplanes withfaces; and characters with more thanan uncanny resemblance to ElvisPresley, Oprah Winfrey and theQueen of England.

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Winter 2003 Promise 15

and her sister, Carly, kept bringingpictures of mermaids as presents forthe artists. “The girls were bothadorable,” recalls Pérez-León. “Bothof them were a joy to have around

and had great impact on our lives.That’s why we included a mermaid in the mural.”

Replicating the “real world” is not the goal of this work of art. The

colors and imagery used throughoutthe mural highlight the importance of escapism and imagination—twoactivities that children hold onto and call upon in times of need. That is why the mural contains UFOs and aliens; airplanes withfaces; and characters with more than an uncanny resemblance to ElvisPresley, Oprah Winfrey and theQueen of England.

Angel Young, mother of St. Judepatient Valery Young, mentioned her daughter’s fixation with fairies to artists working on the mural. The painters immediately incorporat-ed a dazzling, lilac-colored fairy into their design. When Valery (pictured on the cover of this maga-zine and on the opposite page) sawthe completed fairy in the mural shewas so thrilled that she asked politelyif she could touch it. With permissiongranted, Valery’s dream to experiencea beautiful fairy came true.

Homage to miraclesMost people requested that the

mural include playful scenes, such as children jumping rope and girlsplaying dress-up. But patients andfamilies also requested the inclusionof children who have experiencedhair loss through chemotherapy treat-ment. One of the mural’s strengthslies in its ability to present and dealwith sensitive issues. How manypieces of art in the world containpaintings of children who have suf-fered hair loss because of chemother-apy? How many murals containimages of children and adults inwheelchairs? This mural depicts thechallenging aspects of catastrophicdisease in a positive light.

“The mural has created a littleworld that I am very happy about,”says Pérez-León. “When art has the capacity to shift children’s focus from symptom discomfort totheir own imaginations, it is a gift from God.”

A poignant part of the mural features a room full of brightly colored masks. The masks represent the emotions a child experienceswhile confronting a catastrophic ill-ness: sadness, happiness, anger,

fatigue and fear. “Iwanted to produce amural that acknowl-edged feelings thatare not necessarilyhappy,” explainsPérez-León. “Thetone of the mural isgenerally happy andoptimistic, but noteveryone is happy.I’m not alwayshappy. And some-times kids and par-ents are not.”

Another part ofthe mural features anadult man with hairloss who has under-gone chemotherapy.The image of a smil-ing adult who has

recovered is a strong message to thechildren of St. Jude: survival andrecovery are not only obtainable, butworth fighting for.

The first phase of the mural,which took approximately sixmonths to complete, features its own version of “Where’s Waldo?”This edition, however, might be more aptly titled “Where’s Danny?”The object of the game is to find aminiature, painted portrait of St. Jude founder Danny Thomas hidden somewhere within the mural. This whimsical exercise pays homage to a man who under-stood the power of dreams and imagination.

“What Danny Thomas has done is contagious,” says Pérez-León. “St. Jude is a miracle that continuesto reiterate one day after another.

“You hear about miracles whilegrowing up—things that happenjust once. But this place is where miracles happen one day after anoth-er, after another, after another.”�

“You hear about miracleswhile growing up—thingsthat happen just once. But this place is where miracles happen one dayafter another, after another, after another.”

Melissa Dunn, Claudio Pérez-León and Sarah Hiles were part of a nine-person teamthat brought the walls to life on the second floor of the Patient Care Center.

Artists painted a fairy when they heard that St. Jude patientValery Young often wore fairy wings at play. When Valerysaw the fairy, she asked politely if she could touch it.

aActigraphs—they’re cool; they’re sleek; they givechildren superhuman powers….Well, that’s what somekids want to believe when they wear the devices during a patient fatigue project at St. Jude Children’sResearch Hospital.

Resembling slim, black watches, actigraphs measureactivity levels. But sometimes children imagine thatthey do much, much more. One boy wanted to partici-pate in the study because the watch resembled equip-ment worn by the Mighty Morphin’ Power Rangers.“Whenever he felt that he needed extra protection, heheld it up in front of him,” says Pamela Hinds, RN,PhD, director of Nursing Research.

Another patient questioned whether the actigraphdid more than record movement. “When I wear thiswatch can you tell when I’ve been bad? Because if youcan, then I’ll take it off just before I plan to be bad,”he warned.

Hinds laughs when she recalls some of her con-versations with children participating in NursingResearch projects. But the studies themselves are seri-ous. For the past 18 years, Hinds and her colleagueshave been seeking innovative ways to improvepatients’ quality of life, to relieve their symptoms andto foster hope. “These are not studies that are goingto lead to cures,” Hinds explains. “They’re going tocontribute to cures. They’re going to help patientssustain themselves during treatment so that they canwithstand the rigors of treatment.”

Different ways of doing scienceWhen Hinds arrived at St. Jude in 1985, few peo-

ple had heard of her field. “A nurse? Doingresearch?” scoffed the skeptics.

“There are different ways of doing science,”Hinds responded.

Even the Institutional Review Board was warywhen Hinds proposed her first project, a study abouthope. But when the protocol began, the response was

overwhelming. “I had people knocking on my doorand saying, ‘Are you the nurse who’s studying hope?I want you to interview my child,’” recalls Hinds.“Or I’d open the door to find an adolescent with anarm around another patient saying, ‘You need to talkwith him about hope.’ Physicians were also referringkids to the study. It was huge.”

That successful project was followed by dozens ofother studies. As a result of information gleanedfrom those protocols, many positive changesoccurred in patient care at hospitals around thecountry. For instance, St. Jude nursing researcherscreated new methods for administering platelets, col-lecting certain blood samples and measuring patientpain and fatigue.

Too tired to smileResearch questions often emerge as a result of

problems encountered by clinicians, patients or fami-lies. When the researchers asked patients to list trou-blesome symptoms, they expected that pain would be

16 Promise Winter 2003

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nurses areconductingresearch to

improvepatient care�

eliminatesuffering and

foster hope�

Kinder�Gentler

ResearchBY EL I Z A B E T H JA N E WA L K E R

Liz Burghen, RN, MSN, MBA, a nursing research specialist,explains the actigraph to 10-year-old Jarvis Harper and hismom, Latisha Harper. St. Jude researchers are using acti-graphs to record activity levels in a study to evaluate sleepand fatigue in children with acute lymphoblastic leukemia.

18 Promise Winter 200318 Winter 2003 Promise 19

first, followed by nausea, hair loss and loneliness. But thechildren overwhelmingly cited fatigue as the most debilitat-ing problem. “I’m so tired that I can’t even smile,” theywould say. “I’m so tired that even if my best friend travelshours and hours to see me, I can’t talk to her.”

Those comments prompted Hinds and her team to beginstudying fatigue and sleep. “We want to do whatever wecan to help patients sleep so that they can have the growth,repair and healing that sleep promotes,” explains JamiGattuso, RN, MSN, a Nursing Research specialist who isworking on the “Sleep, Fatigue and Dexamethasone” project.

A backbone of leukemia treatment, the drug dexametha-sone often induces sleeplessness in children who take it. St. Jude nurse researchers are asking some children withacute lymphoblastic leukemia to wear actigraphs for 10days—five days before and five days during administrationof the drug. A computer chip in the actigraph records thechildren’s activity levels.

The patients and their parents also keep diaries detailingthe children’s activities, moods and fatigue levels. Thosediaries help researchers explain movementsthat appear in the actigraph data. Frequentblood tests help researchers determine howeach patient metabolizes the dexamatha-sone. “If we find that there is an actualchange in sleep patterns, then that mayindicate that we need to administer the drugdifferently,” says Hinds.

When Blaine Conway of Missouri takesdexamethasone, he sleeps fitfully, if at all.“When he’s taking dex, it affects our wholefamily,” says Robin Conway. “When I takehim to school, I say, ‘We’re a dex familythis week. Blaine was on dex the week after school started, and he fell asleep inclass. That is so unlike him. He’s veryactive, but he was sleep deprived from thenight before.”

When a child is running around the house at 3 a.m., theparent suffers, too. Exhausted parents might be more apt tomake mistakes when they are caring for sick children.Because the parents’ quality of life affects the patients,Hinds, nurse educator Jeri Tidwell, RN, MSN, and theNursing Research staff are planning a new study thatembraces parental sleep and fatigue.

A related project is exploring whether mild exercise willaffect the fatigue and sleep levels of inpatients. Researchersalso record the number of times staff members enter andexit patient rooms at night. “Several years ago we did anobservational study and found that the number of entriesand exits to patient rooms at night was sometimes as highas 38,” says Gattuso. “We want to make the environment

even more conducive to healing.” The researchers are inter-ested in exploring ways to create fewer interruptions whileproviding the same level of care.

More quality to lifeThe nurse researchers are also involved in projects that

study the impact of treatment on children’s lives. One suchstudy evaluates the effectiveness of a drug called Procrit(epoetin alfa), which is used to treat fatigue associated withcancer. Many of the hospital’s protocols, or scientific treat-ment plans, also feature quality of life objectives created byHinds and her staff. If the researchers determine that thequality of life plummets at a specific point in treatment,they can create intervention plans to prevent or alleviate the problems.

Robin Conway understands the importance of suchresearch to children such as 6-year-old Blaine. “It’s soimportant to improve the quality of life for these kids,” she says. “This treatment has taken three years of Blaine’s life. Anything that can improve the lives of kids

during treatment would be a good thing.”Glenda Kinnebrew’s son Bryan has participated in one of

the Nursing Research studies. The 15-year-old fromLouisiana and his mom are thankful that the researchersaddress quality-of-life issues. “It’s great that St. Jude tries tomake things easier on us,” says Glenda. “Leukemia is sucha traumatic illness, and it affects the total family and theirlives. The studies may not help Bryan, but they may helpother children in the long run, so we’re willing to do them.”

Listening to parentsBecause they realize that not all children survive treat-

ment, Hinds and her staff have conducted four studies

addressing end-of-life issues. “It’s critically important forparents to know that they have been good parents whentheir children are dying,” says Hinds. “How the parentssurvive that time and how they perceive themselves as par-ents will mark the rest of their lives. We need to do all thatwe can to learn their definition of being good parents andto help them achieve it.”

Nursing researchers asked parents to help them identify

the symptoms that children are most like-ly to display the last week of life. Thirty-three symptoms were pinpointed as aresult of the study. A new protocol willexpand on that topic, examining howparents deal with end-of-life symptomsand the types of information and supportthey receive or need during that time.

Other studies have addressed waysthat health care providers can help par-

ents make end-of-life decisions. In one study, parents ofpatients who had died explained the kinds of decisions theymade, how they reached them and who helped them makethose decisions.

“Of course, we only talked with parents who had indi-cated an interest in participating in such a study,” saysGattuso. “When you hear a family member tell you aboutthe last day of their child’s life, you think, ‘I’m not worthyto hear this.’ It is such a privilege to do research with thesechildren and their families. These parents opened up andtold us so many things that were extremely valuable andthat will help us immeasurably.”

Hope is hereA multidisciplinary team of St. Jude staff members are

using much of the data obtained from Nursing Researchstudies to create ways to foster hope in patients. “Hope iswhat St. Jude is all about and what it was founded on,”says Gattuso, “so it’s very important that we promote hope-fulness in a therapeutic way.”

The Hope Research Translation Team has reviewed theavailable research about hopefulness. They have talked tostaff, patients and families about the topic, and have createdseveral projects to help promote hope. St. Jude ChaplainBrent Powell created the Hope Hotline; parents can call thisphone number 24 hours a day to hear a message of hopeand to leave requests for prayer or further contact. Otherteam members are creating educational flyers and ParentHandbook inserts about hope. The team plans to buildInternet pages to further encourage hope in patients andfamilies.

Hinds sees the Hope Research Translation Project as ahealthy and natural outgrowth of the work she and her col-leagues have been doing for years.

“Parents have told us that they recognize that not allchildren can get cured, but that they still need to havehope,” explains Hinds. “The parents know that ‘hope’ isnot a promise of a cure. But it’s a promise that we will gothrough this with them, and a promise that we won’t aban-don them, even if cure becomes impossible.

“And that’s what hope is all about.”�

Pamela Hinds, RN, PhD, and Jami Gattuso, RN, MSN, areinvolved in numerous projects aimed at improving the lives of St. Jude patients. “These are not studies that are going to lead tocures,” says Hinds. “They’re going to contribute to cures. They’regoing to help patients sustain themselves during treatment so thatthey can withstand the rigors of treatment.” Other members ofNursing Research are Liz Burghen, RN, MSN, MBA; Cheryl Cox,RN, PhD; Brenda Steen, RN; and Linda Watts-Parker.

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“When I wear this watch can youtell when I’ve been bad? Because ifyou can� then I’ll take it off justbefore I plan to be bad�”

When the researchers asked patientsto list troublesome symptoms� theyexpected that pain would be first�followed by nausea� hair loss andloneliness� But the childrenoverwhelmingly cited fatigue as themost debilitating problem�

Winter 2003 Promise 21

the fall of 2002. Researchers andclinicians hope that this study willhelp them determine the best way toadminister the anti-cancer drugsthat have been used to treat AMLfor decades.

The Hechts are optimistic. “Eventhough I’ve lived in Memphis allthis time, I’m only now learning just how excellent the doctors andstaff are, and I trust them,” says

Silvia, glancing at Walker as he dozes off in his aunt’s arms.“He’s been a real trouper.”

Cells run amokBetween medical exams, Walker,

sporting khakis and a plaid button-down shirt, gouges his red Crayononto a crisp, white canvas. Insidehis small body, immature cells aregrowing with abandon. No one

knows for sure what has triggeredthe genetic signals of Walker’shealthy blood cells to go haywireand cause leukemia, but that isexactly what has happened.

It all started with stem cellslocated in Walker’s bone marrow.Stem cells mature into a variety of other cells, including infection-fighting white cells; oxygen-carrying red cells; and platelets,

20 Promise Winter 2003

TeachingOLD Drugs NEW Tricks

Avisit to the 2002Chicago Marathon Website will display MichaelHecht’s name, but nothis finish time. It’s not

that Michael wasn’t prepared; anaccomplished runner, he has beentraining for years and even arrived inChicago two days before the race. Butwhile others were resting for the 26.2-mile run, he and his wife, Silvia, wereracing back to Memphis. During acab ride on the way to their hotel,

they had received a cell phone callfrom Silvia’s sister, saying that theirfirst-born son had cancer. Three-year-old Walker Hecht had become sickwhile staying with his aunt for theweekend. A doctor’s visit revealedthat he had acute myeloid leukemia,or AML. By the time the Hechts’plane touched down in Memphis thatevening, Walker had already beenadmitted to St. Jude Children’sResearch Hospital.

Walker has the “good” kind of

AML, says Silvia. Her eyebrows arch with hope, but the shrug of hershoulders clearly says, “whatever that means.” For 13 days, Silvia andMichael, native Memphians, havebeen on a cancer crash course, learn-ing everything from the “good” and“bad” types of AML to the names of five-syllable drugs they hope willsave their son’s life. Walker is the first patient enrolled in the new St. Jude AML protocol, or scientifictreatment plan, which opened in

•

•

Using anti-cancer drugs that have been aroundfor decades, St. Jude investigators are armedwith a new plan of attack on AML.

Three-year-old Walker Hecht is the first patient enrolled in the new St. Jude AML protocol. Researchers and clinicians hope that this study will help them determine the best way to administer the anti-cancer drugs that have been used to treat AML for decades.

•

BY TA N U J A CO L E T TA

•

Winter 2003 Promise 2322 Promise Winter 2003

the blood-clotting agents. The maturecells usually perform their duties, age,die and are replenished by new cells.But AML throws a monkey wrenchinto the cycle, programming stemcells to multiply continually withoutmaturing or dying.

These “blasts,” as they are called,are too underdeveloped to fight infec-tions effectively. Instead, they crowdout healthy cells in the bone marrowand weaken the body’s ability to pro-tect itself from infection and bleed-ing. Imagine the chaos of a worldruled solely by children and teenswith no adult supervision. Scary? St. Jude physician Jeffrey Rubnitz,MD, PhD, thinks so.

A member of St. JudeHematology-Oncology, Rubnitz has dedicated his career to treatingand studying the intricacies of child-

hood AML and the morecommon acute lym-phoblastic leukemia, orALL. He says the differ-ences between the twoleukemias are often frus-trating.

“The research out thereon ALL is acceleratedbecause of the highernumber of children withthe disease, which alsospeeds up clinical trials,” he says. “But also,AML is just a whole different disease. For reasons we don’t know just yet, it’s a lot moreresistant.”

Acute myeloidleukemia affects about500 children a year in the United States, com-pared to 2,000 affected by ALL. Acute lym-phoblastic leukemia isassociated with lympho-

cytes, white blood cells that defendthe body’s immune system; AML tar-gets everything else in the blood—redblood cells, platelets and bacteria-eat-ing white blood cells known as gran-ulocytes and monocytes. Initial remis-sion, the absence of leukemic cells, ishigh for both diseases—98 percentfor ALL and 90 percent for AML.But 80 percent of ALL patients go onto be cured while nearly half of AMLpatients relapse.

Instead of being one disease, AML is divided into seven subtypes.Some subtypes respond well to treatment (the “good” types thatSilvia Hecht mentioned), and othersdo not. Rubnitz says that targetedtherapy is the only answer for a lasting AML cure. “What would beideal is to have individual therapiesfor each subtype,” says Rubnitz.

“We’re not there yet, but we’re mov-ing in that direction.”

Old but effective weaponsAML therapy is based on two

drugs used for the past 30 years.Cytarabine, or Ara-C, and daunorubicin have been fierceweapons in attacking AML in adults. Although results have beenpositive with children, too, manyquestions about their use remainunanswered. The new St. Jude protocol may solve some of thosemysteries by including numerouspatients from across the country. The first AML protocol at St. Jude to include outside institutions, thisstudy involves children fromCalifornia’s Stanford UniversityMedical Center; Cook Children’sMedical Center in Fort Worth, Texas; and Children’s Hospital of Michigan.

“At St. Jude, we see about 20 to25 AML patients a year,” Rubnitzsays. “We need to see a larger pool of patients to really answer the therapeutic and biologic questions we have on AML, because the point of this protocol is not only to improve cure rates but to learn as much as we can about the biology of the disease.” While each hospital will treat its ownpatients using the St. Jude treatmentplan, all biological samples will bestudied at St. Jude.

Asking the right questionsThe laboratory where Kristine

Crews, PharmD, will study patientsamples from the AML protocol isjust a few turns down the hallwayfrom the rooms where Walker istreated. She says the close prox-imity and collaboration betweenresearch and clinical departments at St. Jude make it one of a few

institutions in the world that couldtake on a study like this. “We have acrucial mix of excellent patient careand closely located research labs,”says Crews, who works inPharmaceutical Sciences. “We can see what effects the drugs are havingin the patients’ leukemia cells in amatter of hours.”

Crews’ studies revolve aroundpharmacokinetics, the study of howdrugs are absorbed, distributed,metabolized and excreted from thebody. Her lab will study the effects ofhigh-dose versus low-dose Ara-C,with half of the patients receiving oneand the rest receiving the other. OneSt. Jude study shows that high dosesof Ara-C have been effective in treat-ing the subtype of AML that Walkerhas, while the same dose is less effec-tive in other subtypes.

“Combating childhood cancer isnot always about developing newdrugs,” she says. “A lot of times

what we’re looking for are betterways to use the drugs that arealready out there. Ara-C is a very olddrug; yet even though it’s one of themost-studied drugs for AML, we stilldon’t know what the best dosage is.”

Crews is excited about the proto-col. “We’re going to be able to gener-ate a lot of crucial answers fromthis,” she says. “We’re asking all theright questions, not only what is thebest way to use Ara-C in children but also what happens at the level of the genes when Ara-C is used. Itall boils down to finding the absolute best treatment for childrenwith this disease.”

Racing toward breakthroughs

One of the hottest emerging tech-niques in cancer therapy today isgene expression profiling. JamesDowning, MD, chair of the St. JudePathology department, has led the

hospital’s efforts inthe field. Geneexpression profilingallows researchers toscreen thousands ofgenes at once toreveal a person’sgenetic fingerprint;the process can deter-mine a patient’s riskfor relapse or othertreatment complica-tions such as secondmalignancies orinfection by revealinghow genes react tovarious circum-stances.

For the AMLstudy, Downing’s lab, with help from the St. JudeHartwell Center forBioinformatics and

Biotechnology, will study patients’leukemia cells before and after treat-ment with Ara-C to determine thedrug’s effect. The results could leadto the development of more potenttargeted therapies depending on what the patient’s genetic dispo-sition reveals.

“The great successes with trulytargeted therapies have actually beenwith AML,” Downing says, referringto a treatment breakthrough with the AML subtype acute promyelocyt-ic leukemia (APL). “Fifteen yearsago, patients with APL would proba-bly die within 24 hours. Now thatsubtype is regarded as a curable dis-ease.” As part of a national consor-tium created by the National CancerInstitute, Downing is also leadingparallel research that studies AML.“The hope is that we will be able tobetter define the various subtypesand take more and more of them into the curable range,” he says. “Aswe develop new drugs and find better ways of administering the oldones, I would guess that 10 to 15years from now, we’ll have otherAML subtypes pushing the 80 to 90percent cure rate.”

That breakthrough couldn’t come soon enough for the Hechts.Michael and Silvia see a bright futurefor Walker, his brother, Kells, and the baby that is on the way. “I oncethought that St. Jude meant gloomand doom, but I know now that it is a place of hope and survival,” says Silvia.

On December 7, 2002, Michaelwas finally able to run a marathon.But this race was special. As hesprinted by the hospital campus inthe St. Jude Memphis Marathon,Michael knew that he was helpingraise money so that thousands ofother children like Walker could have bright futures, too.�

Kristine Crews, PharmD, of Pharmaceutical Sciencesstudies how drugs are absorbed, distributed, metabo-lized and excreted from the body. Her lab will studythe effects of high-dose versus low-dose Ara-C, withhalf of the patients receiving one and the rest receivingthe other. “Combating childhood cancer is not alwaysabout developing new drugs,” she says. “A lot oftimes what we’re looking for are better ways to usethe drugs that are already out there…. It all boilsdown to finding the absolute best treatment for chil-dren with this disease.”

Jeffrey Rubnitz, MD, PhD, says that targeted therapyis the only answer for a lasting AML cure. “Whatwould be ideal is to have individual therapies for eachsubtype,” he says. “We’re not there yet, but we’removing in that direction.”

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24 Promise Winter 2003

PerspectiveGoing for the Gold

By Tara Lipinski

“Everyone can make a difference,” says Olympic gold

medalist Tara Lipinski, “and St. Jude is a great place to

make it happen.”

I first learned about St. JudeChildren’s Research Hospital severalyears ago when my mom told me thestory about Danny Thomas and howhe founded the hospital. She told mehow the hospital helped sick childrenfrom all over the world, no matterwhat their financial position or walkof life. I was amazed at how the hospi-tal flourished and that it was allbrought about by one person trying tomake a difference. I was truly inspired.At the time, I wasn’t sure how, but Iknew that I, too, could make a differ-ence if I tried.

As an amateur skater, I visited children in hospitals as I traveled thecountry and world. Visiting sick children put my life and athletic com-petition in perspective. I got great sat-isfaction from getting a sick child tosmile or laugh. I knew many of themdid not have a lot to smile about. Themore I visited these special children,the more I wanted to do it again.

Once you spend time with them, youroutlook on life will change forever.Their strength and will to live is amazing. Their smiles capture theessence of life.

I once became close with a youngboy who was suffering with cancer.After he passed, his grandmotherwrote to me and said that I brightenedhis day and helped him through sometough times. Knowing that I had madea difference in his life made a differ-ence in mine.

My first visit to St. Jude was in1999 when my tour made its annualtrip to Memphis. Every year, Stars OnIce hosts a barbecue event for the chil-dren at Target House. It was then thatI fully understood the importance ofSt. Jude’s cause. It wasn’t just provid-ing a cheerful and bright atmospherefor children undergoing medical treat-ment; it was the dedication of the lov-ing staff to improve the lives of allchildren stricken by disease. It’s a car-ing environment that you have to seeto believe.

That day I visited with dozens ofsick children, and I tried to connectwith each one in some way. If I couldget each one to smile or laugh, I knew I was making a difference. It’s

hard to imagine what many of thesekids are going through. I often wonder if I would be as brave if itwere happening to me.

It was really hard to leave that day. On the way out of the hospital, I stopped in the chapel and said a littleprayer. I know God has a warm placein his heart for sick children and maybe that little prayer helped one sick child. I knew as I left St. Judethat day that I would be back.

Everyone can make a difference,and St. Jude is a great place to make it happen. Learn about St. Jude. Findout what you can do to help, and doit. Whether you donate your time,make a contribution or even say a littleprayer, you are doing it for a greatcause. Make a difference; join me inhelping St. Jude.�

In 1998, Tara Lipinski became theyoungest person ever to win a goldmedal in Olympic women’s figure skating. She followed that accomplish-ment with a successful foray into pro-fessional figure skating, winning theLadies World ProfessionalChampionship Gold. A talentedactress, she is also a perennial favoritein Target’s Stars On Ice.

Tara Lipinski autographs a T-shirt forSt. Jude patient Kasandra Hinton.

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What a housewarming!Olympic gold medalist Scott Hamilton reads It’s Okay to be Different, a book by St. Jude supporter

Todd Parr, to children at a celebration opening an addition to Target House. The 78,760-square-footexpansion adds 46 more apartments to Target House, a free home-away-from-home for families of chil-dren receiving treatment at St. Jude. Participating in the November grand opening event were St. JudeNational Outreach Director Marlo Thomas, Grammy-award winner Amy Grant, Target Chip GanassiRacing Team, and hundreds of patients, families and St. Jude supporters.

The new addition replicates the original Target House, where families live in the comfort of their ownfurnished two-bedroom apartments. The expansion includes a family activity area equipped with com-puters and aquariums; the Scott Hamilton Fitness Center; the Tiger Woods Performance Pavilion; theScott Hamilton Arts and Crafts Room; and a professional day spa and meditation room.