promise – autumn 2003€¦ · lisa baker bonnie cameron leslie davidson pat flynn, md mark...

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Autumn 2003

Good News for ALL PatientsPage 2

St. Jude Children’s Research Hospitalwas founded by the late

entertainer Danny Thomas. It opened February 4, 1962. The institution 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 world-class research institution that treats

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

Features2 Graduation Bound

Good news for ALL survivors

6 Great ExpectationsRana Ajlani: Another St. Jude miracle

10 The Art of SurvivalCancer survivors celebrate life

12 Strategic ScienceAttacking the cancer cell

15 A Class ActThe St. Jude School Program

18 Smooth OperationSurgery at St. Jude

22 Haute Times, Cool QuiltsHancock Fabrics’ Quilt ofDreams promotion

Highlights5 Achievements and events

Perspective24 Daisy Fuentes

Finding a purpose

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 PublicRelationsJerry Chipman

Director of Public RelationsJudith W. Black

ALSAC Director of CommunicationsGeorge Shadroui

Publications Manager and EditorElizabeth Jane Walker

Art DirectorJessica W. Anderson

Photo EditorJere Parobek

PhotographersSeth DixonLaura HajarAnn-Margaret HedgesEvanne NewmanJere Parobek

Contributing WritersTanuja ColettaJoe HannaCarrie L. Strehlau

Guest AuthorDaisy Fuentes

Editorial Advisory BoardLisa BakerBonnie Cameron Leslie Davidson Pat Flynn, MD Mark Hendricks Marc Kusinitz, PhDPhil McCarty Carlos Rodriguez-Galindo, MDDavid Tucker Sally Wiard John Zacher

PromiseA publication of St. Jude Children’s Research Hospital Autumn 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 [email protected]. Visit our Web site at www.stjude.org/media. Articles and photosmay be reprinted with permission. ©2003.

On the cover: Ching-Hon Pui, MD, and St. Jude patient Riley Pickett (see article, page 2).Photo by Laura Hajar.

GraduationBound

2 Promise Autumn 2003

GraduationBound

Being an alumna will never bemore fulfilling. Next year, KateMcCloskey will not only gradu-ate from high school, but shewill also graduate from St. Jude

Children’s Research Hospital—with adegree in survival.

At age 2, Kate was diagnosedwith acute lymphoblastic leukemia(ALL) and underwent treatmentat St. Jude for three years. “It’s

incredible to be a survivor.It’s so hard to put

into words. It’s themost incredible

feeling,” exclaims Kate one early morning before abusy day of school, band practice and babysitting begins.

Now ALL survivors like Kate and current patientshave more to be excited about. A St. Jude study pub-lished in the August 2003 New England Journal ofMedicine shows that survivors of ALL are consideredofficially cured if leukemia free for 10 years or more.The outlook is even rosier for survivors who did notreceive radiation as part of their treatment.

Survivors’ report cardAccording to Ching-Hon Pui, MD, director of the

Leukemia/Lymphoma division at St. Jude and leadauthor of the study, this discovery is important. “Thegood news is that patients who didn’t receive radiationsurvive exactly the same as the general population andsurvive normally, as best we can tell, because theyhave an employment rate and marital rate as good asthe general population,” Pui says.

“For those who had radiation, I think the messageis that they need to pay attention to the development ofsecond tumors. Even though most are benign, we still

B Y C A R R I E L . S T R E H L A U

A new study from St. Jude indicatesthat survivors of childhood acutelymphoblastic leukemia who havenot received radiation treatment aspart of their therapy have virtuallythe same long-term life experiencesas the general population.

Autumn 2003Promise 3

Ching-Hon Pui, MD, shares a light momentwith 5-year-old Westin Edelen of Missouri.Survivors of ALL have rosy futures, accordingto a study published in the New EnglandJournal of Medicine. For more information,visit www.stjude.org/media.

LAUR

A HA

JAR

Autumn 2003Promise 54 Promise Autumn 2003

These recent news items reflect only ahandful of the lifesaving projects occur-ring at St. Jude. For information aboutother recent discoveries, visit the St. JudeWeb site at www.stjude.org/media.

AIDS vaccine progress: The hospi-tal has received approval from the Foodand Drug Administration to begin testinganother part of its HIV vaccine regimen.The hospital is beginning Phase I clinicaltrials for the second part of a three-tieredHIV vaccine designed to protect againstall variants of the AIDS virus.

Reversing blood disease:St. Jude researchers have overcome twotechnical obstacles that limit the successof gene therapy for blood diseases such asbeta-thalassemia (Cooley’s anemia) andsickle cell disease. The results offer prom-ise for developing gene therapy to treat

blood diseases caused by defective hemo-globin. A report on this work appeared inthe May issue of the journal Blood.

Genes and the retina: Investigatorshave discovered that a gene key toorchestrating embryo development alsofine-tunes organization of the retina. Thesingle gene, called Prox1,turns on and offat two different times in order to guidetwo different processes during the embry-onic retina development. A report on thiswork appeared in the May issue of NatureGenetics.

Sickle cell and the brain: African-American children who have two genesfor sickle cell disease (SCD) develop thispotentially fatal disorder. Siblings of thesechildren who inherit a single gene forSCD are at increased risk for developingabnormal, “twisted” arteries in their

brains. This can lead to elevated risk ofstroke in adulthood. The arteries resemblethose commonly seen in elderly patientswith hypertension but are rarely seen inchildren. This finding helps to explain theelevated risk of stroke among African-American adults. The findings were pub-lished in the July issue of Radiology.

Leukemia treatment inHonduras: Investigators at St. Jude andHospital Escuela (Tegucigalpa, Honduras)have identified how economic and cul-ture-based behavior and beliefs discour-age many parents from ensuring theirchildren get the treatment they need foracute lymphoblastic leukemia (ALL). Thefinding has helped physicians overcomethese obstacles and improve cure rates forHonduran children with ALL. Their find-ings are published in the August issue ofThe Lancet.

Louise Stoddard has always been fas-cinated with collecting items, particularlybooks, dolls, music boxes and snowglobes. She and her husband, Charles, anaeronautical engineer, spent much of theirlives moving from one city to another.Going to yard sales together in search ofcollectibles was a way of making them-selves feel at home, whether they were

living in Texas or Connecticut.These days, if Louise isn’t working in her yard, she can usually

be found at a flea market, hoping something unusual will catch hereye. “About a year ago, I started collecting nutcrackers,” saysLouise, a soft-spoken Texas native. “I’m not sure why they appealedto me, but I already have more than 100. I even have a MickeyMouse!”

After Charles retired in 1991, the couple sat down with anadviser to discuss their long-term financial plans. When the adviserasked how they would like their property to be distributed when

they no longer needed it, the couple knew immediately. “The firstthing we thought about was St. Jude Children’s Research Hospital,”says Louise. “Charles always had a lot of admiration for DannyThomas and the work the hospital did. Because we had no childrenourselves, we decided that making St. Jude the sole beneficiary ofour estate was the right thing to do.”

When Charles passed away in 1993, Louise discovered anotherway to make gifts to St. Jude. She used a portion of the proceedsfrom his life insurance policy to create a charitable gift annuity. Inaddition to paying her a fixed amount annually for life based on herage at the time the gift was made, a portion of each year’s annuitypayment is received tax free. Louise also qualified for a generousincome tax deduction the year she made her gift.

“I’ve never had a chance to visit St. Jude in person,” saysLouise, “but I’d like to. Everyone I’ve talked to there has been sokind and helpful. The children there are fortunate to be surroundedby such warm and caring people.”

If Louise does visit St. Jude, she’s sure to collect one thing thatcannot be bought at a flea market: gratitude.

want early detection. But they can alsobe assured that their leukemia is cured.”

The results stemmed from a long-term follow-up study of 856 patientstreated between 1962 and 1992. “St. Jude is a unique institution because,unlike other institutions, we follow ourpatients practically forever,” Pui says.

“We focused on two major issues inthis study,” says Melissa Hudson, MD,who directs the hospital’s AfterCompletion of Therapy clinic and is asenior author of the report. “First, wewanted to know how our long-term sur-vivors are doing as they are beginning toage, and whether the leukemia treatmentspecifically affects their mortality ratesas compared to other people their sameage and gender in the general popula-tion. We also wanted to know how theirleukemia treatment affected specificareas of social functioning and socialcompetence—marital rates, ability to get

insurance and employment. Wethought we were going to seemore insurance discrimination,and we did not. Our survivorshave comparable rates of insur-ance to other people their sameage in the population.”

Lifelong learningPui and Hudson agree that sur-

vivors like Kate, who had radia-tion, should maintain healthylifestyles to reduce the risk ofgetting second cancers. Katesays she has made it a priority inher life to be conscious of her

health and to helpher doctors.“Having cancer hasmade me moreaware and shouldmake all survivors alot more aware,”Kate says. “As aperson who hadchildhood cancer,you have to tellyour doctor yourhealth history, and itcan be frustrating.It’s hard to face the

reality that you’re going to have medicalproblems, but it’s part of being a survivor.”

Only 53 percent of the survivors par-ticipating in the study had undergonemedical examinations within the previ-ous year. The rate for the general popu-lation is 80 percent. “We’re trying tomotivate our survivors,” says Hudson.“They do need to have a relationship

with a health care provider who knowsabout their history—not so they have topanic every time, but so that the healthcare provider is aware on a baseline ofany physical or emotional issues experi-enced by the survivor.” Hudson says thatclinicians can help former cancerpatients learn about the current researchthat affects childhood cancer survivorsas they age.

According to Pui, current ALL andacute myeloid leukemia (AML) patientsat St. Jude no longer receive radiationunless absolutely necessary. “We’realways concerned about radiation-relatedsecond cancer, and how the radiationcan affect the patient’s neuropsychologi-cal functions,” he says. “There has beena trend over the years to reduce theamount of radiation and the number ofpatients who get radiation. Based on ourstudies over the past decade, we thinkwe can possibly omit radiation altogeth-er for all patients by intensifying otheraspects of therapy without compromis-ing their chance of cure.”

By eliminating radiation, quality oflife for patients will improve. “I hopethat in three to five years’ time, we cantell the world it’s feasible to not radi-ate,” Pui says. “If we can prove wedon’t need to give radiation to cureleukemia, survivors of leukemia canexpect an even better quality of life inthe future.”

St. Jude is already moving in thatdirection. “This study provides moredata to support the elimination of radia-tion as a front-line treatment for childrenwith ALL,” Hudson says.

As Kate approaches her eighteenthbirthday and life without checkups at

St. Jude, she has advice forall patients: “Be strong inyourself and have faith inyourself,” she says.

“Even though it’s a longroad, you will be stronger from within.”�

From collections to donations

Next year, Kate McCloskey will graduate from St. Jude as well as from high school.

Melissa Hudson, MD, director ofthe hospital’s After Completion ofTherapy clinic, pins a “survivor”pin on Michael Brown, a long-term survivor of ALL.

LAURA HAJAR

H i g h l i g h t s


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

Family, faith and a dedicated medical

team helped one St. Jude patient return

from the brink of death. Rana Ajlani’s

caregivers agree: “When she came

back, it was truly a St. Jude miracle.”GreatExpectationsR

ana Ajlani didn’texpect to be inMemphis more thansix months for cancer

therapy. After treatment, she cer-tainly didn’t anticipate a relapse.And when she obtained a stem celltransplant, no one predicted seriouscomplications, because she had amatched donor.

But then the transplanted cellsbegan attacking Rana’s body. Formonths, she lay in the IntensiveCare Unit on a ventilator, uncon-scious, her organs shutting downone by one.

Almost everyone assumed thatshe would die.

But Rana kept fighting, her fam-ily kept praying and her clinicalteam persevered.

This is the story of a girl whosurpassed all expectations.

Change in plansBorn in Cannes, France, Rana

Ajlani has lived most of her life inSaudi Arabia. A soft-spoken teenag-er with green eyes and a brightsense of humor, Rana is comfort-able conversing in Arabic, Englishor French. Throughout her adoles-cence, she enjoyed swimming, skiing and playing tennis. In Marchof 2000, a persistent cough prompt-ed the usually healthy teen to visitthe doctor. She was shocked tolearn that she had non-Hodgkinlymphoma, a cancer of the lymphoid tissues. Rana’s parentsbegan researching treatmentoptions. “I began looking aroundand I heard about St. Jude immedi-ately,” recalls her mother, Mouna.

Soon Rana was living inMemphis, undergoing chemo-therapy at St. Jude Children’s

Research Hospital. At first, hertreatment progressed smoothly. Butafter a few months, the diseasereturned. Rana underwent additionalchemotherapy and an operation toremove a tumor. Then doctors optedto perform a stem cell transplant.

Stem cells are immature cellsthat can renew themselves anddevelop into a variety of cell types.The stem cells used for transplanta-tion at St. Jude are harvested fromthe blood or bone marrow of chil-dren or adults.

After extensive testing, Rana’solder sister, Loulwa, was deemed to be a perfect match for the transplant. Doctors hoped thatLoulwa’s stem cells would beginreproducing within Rana’s body and would replace her immune sys-tem. The new, healthy immune system would recognize Rana’s

Autumn 2003 Promise 7

SETH DIXON


cancer cells as foreign and kill them. The transplant occurred in October of

2000. The next eight months wereuneventful. But in July of 2001, Ranabegan to cough and experience breathingproblems. Doctors found that she haddeveloped graft-versus-host disease(GVHD): powerful white blood cellscalled T-cells in the donated immune sys-tem had perceived Rana’s body as foreignand had begun to attack it.

Rupert Handgretinger, MD, PhD,director of Stem Cell Transplantation atSt. Jude, says GVHD occurs in about 20percent of transplants between matchedsiblings. The term “perfect match” impliesthat some—but not all—immune systemcharacteristics have matched. “Even whenyou have a ‘perfect match,’ there are stillsome minor antigens, which we have notidentified yet, that can cause graft-versus-host disease,” Handgretinger says. “So acomplete match doesn’t exclude GVHD.But it was rather rare that it came that late.”

Soon after the GVHD diagnosis, Ranabegan coughing up blood and entered thehospital’s Intensive Care Unit (ICU).

Attacked from withinRana’s family watched in horror as her

condition rapidly deteriorated. Her lungsfilled with blood because of recurrenthemorrhages. Fluid accumulated aroundher heart. She had pulmonary failure andrequired a ventilator to breathe. Her kid-neys failed. The outlook was grim.

St. Jude employees worked relentless-ly to help Rana. They administereddozens of medications. Some of thesewere designed to weaken the donor’simmune system so that it would ceaseattacking her body. But doctors walked atightrope as they attempted to suppressher immune system. “When patients areon immunosuppression, it becomes like aticking clock,” says Gregory Hale, MD,clinical director of Stem CellTransplantation. “Eventually, you’ll endup getting an infection, most of which arelife threatening. The most common cause of death in patients with graft-versus-host disease is infection.”

Evelyn Fields, RN, worked in the

ICU during Rana’s ordeal. “I can’t evendescribe how she looked,” Fields says.“I’m a dark-skinned black person. Well, Rana was as dark as me. Her skin was as hard as a brick. If youtouched her skin, fluid would seep out.”

As the days turned into months, Rana held tenuously to life. The doctorsand nurses offered little hope that Ranawould survive. “Through medical judg-ment,” Handgretinger says, “she wasgoing to die.”

After 25 years of working in the ICU,Michelle Mosby, RN, also knew what toexpect. “She had multi-system organ failure after a bone marrow transplant,”says Mosby. “By what we all know andhave experienced, Rana shouldn’t havemade it.”

But they didn’t count on a family whoabsolutely refused to accept defeat.

Expecting a miracle“We never gave up hope,” says

Mouna. “Never.” For more than five months, Rana’s

family stayed by her bedside everymoment. Mouna learned how to bathe herdaughter; clean her trach; change her bed.She learned about the dosage, purposeand use of each medication. The clinicalstaff was amazed by the family’s unflag-ging dedication and unwavering hope.

“It took strength and faith to pull thisoff,” observes Peggy Derringer, RN. “And Rana’s family was absolutely devoted. They were there 24-7.”

“Rana’s family is an amazing example

of the way a family should love eachother,” says Mosby. “Everybody sacri-ficed; everybody put their life on hold.They wanted us to do everything wecould possibly do to keep Rana alive. Ithink they really, really believed that

God would heal Rana.”

Fields watchedas Mouna spenthours prayingfor Rana. Today,the veteran nurseweeps when sherecalls Mouna’swords to her: “Iknow the oddsare against her,but I just believeGod can dothis,” Mounatold Fields. “I

believe that if there’s one chance in a mil-lion or one chance in 10 million, thenGod will heal my baby.”

During the darkest days, some peoplesuggested that the Ajlanis take theirdaughter home to Saudi Arabia. ButMouna says they rejected that ideabecause of one statement made byHandgretinger. “If a miracle is going tohappen,” he told them, “it willhappen here.”

Rana’s family was also upheld byother St. Jude staff members, such asTorrey Sandlund, MD. “Dr. Sandlundused to visit Rana when she was uncon-scious and pray with us,” Mouna says.“He even let his church pray for Rana.That deeply touched us at such a difficult time. The people at St. Judehelped us to cope.

“When we first came here, we had afew favorite doctors, nurses and care-givers,” Mouna continues. “But after allthis time, we can say that every single one who took care of Rana is deep in our hearts. The love, excellent care and patience Rana received was abovedescription.”

In early 2002, Rana’s condition beganto improve gradually, almost impercepti-bly. Then Rana and her caregivers faceddifferent challenges.

Rana returnsWhen she returned to consciousness,

Rana had neither speech nor vision. “Itseemed like a jungle,” recalls Rana,describing her eyesight. After an ophthal-mologist administered steroid injections,her vision improved dramatically. Butbecause of an antibiotic-resistant bacterialinfection, Rana had to spend additionalmonths in isolation—no mean feat for ateenager who craves contact withher peers.

After lying in bed for months, shecould no longer move her muscles. Withdaily help from Janet Adams of St. JudeRehabilitation Services, Rana began thearduous task of re-learning the most basicmovements.

“She had no head control; no trunkcontrol; no sitting balance whatsoever,”says Adams. “Just for Rana to hold herhead up for two to three seconds at a timetook 100 percent of her effort.”

Cycling 30 seconds on a stationarybike was an ordeal for Rana because ofher decreased lung function. As she

regained muscle control and saw theprogress she was making, Rana becamemotivated to do more. Seven months later,she was walking. “Rana and her familyare an inspiration to me,” Adams says. “Inspite of her illness, Rana had things thatmany people long for—a family whoshowed and continues to show theirunwavering love and support for oneanother; whose trust and belief in Godallowed them never to give up hope forRana’s recovery. Rana has worked hard.

She is now able to do many of the thingsthat are important to her. That, in itself, isan inspiration.”

One of the few people who could visitRana during isolation was DennisMedford, her teacher through the St. JudeSchool Program and Memphis CitySchools. When Medford began workingwith Rana, Medford discovered that shewas an intelligent and highly motivatedstudent with a streak of perfectionism anda healthy dose of humor. “She’s a joy toteach,” observes Medford.

One cold, winter day, Medford arrivedat the isolation room to find a bucket ofice blocking his way and a “Snow Day”sign affixed to the door. “It didn’t work,”laughs Medford. “I enjoy Rana too muchto go away without seeing her!” Medfordsays Rana’s quirky sense of humoremerged again last Halloween, when shedressed as a ghost that had been in isola-tion for 2000 years.

Because of damage to her lungs andkidneys, Rana still requires additionaloxygen and must endure dialysis several

times each week. Eventually, she may be a candidate for a kidney transplant.The GVHD still smolders within her sys-tem, but a new treatment, extracorporealphotopheresis, may help extinguish thatfire completely.

Rana is the third St. Jude patient to betreated with photopheresis. Twice a weekshe undergoes the procedure, which ismuch like a blood transfusion. A machineremoves blood from Rana’s body, and herT-cells are mixed with a drug. When the

mixture is exposed to ultraviolet light, thedrug is activated; the treated blood is thenreinfused into Rana’s bloodstream.

“This process is really new,” saysHandgretinger. “It’s not yet known why itworks, but at the moment it’s the besttherapy for graft-versus-host disease ifother treatment fails. Rana got renal fail-ure from some of the drugs we use forGVHD; since we cannot use those drugsagain, we have put her on photopheresis.”

InspirationNow that the storm has abated, Rana

is resuming a more normal life. But St. Jude staff members still marvel at the dedication of her family. BonnieMason, RN, says Rana’s parents treat thegirl like royalty. That’s why Mason paint-ed a glorious princess on the door toRana’s isolation room.

“I felt that Rana was a princess in herdaddy’s eyes,” explains the nurse-cum-artist. “Rana has this crazy laugh thatshakes her whole body. I just love to hearit, so I do things like that to make cominghere more enjoyable for her.” Mason saysshe’s also impressed by the tender careMouna bestows on Rana. “That lady takescare of that child like she’s a preciousjewel,” Mason says. “She’s the kind ofmom everybody would want to have ifthey were sick.”

Even though she left Intensive Caremonths ago, Rana’s ICU nurses continueto draw inspiration from their patient’sastounding recovery. “Rana was not sup-posed to be alive,” says Evelyn Fields. “Ithink her family just willed a miraclethrough prayer and hard work. By allaccounts, medically, she should not behere. When she came back, it was trulyone of St. Jude’s miracles.”

“Rana’s recovery was a combinationof family support and medical care,” says Michelle Mosby. “Her family really, really worked hard to pull Ranathrough, and they were rewarded. It wasbeautiful. When I see her now, I almostcome to tears.

“It’s seriously a miracle that Rana’shere,” continues Mosby. “She must beawfully special. She has lots of things left to do.”�

“Rana’s family are anamazing example ofthe way a familyshould love eachother,” says one St. Jude nurse. Here,Rana shares a quietmoment with (fromleft) her mother,Mouna, and her sisters, Zayna and Loulwa.

For Rana, the monthsin isolation wereinterminable. So atlast year’s Halloweencelebration, Ranadressed as a ghostthat had emergedfrom centuries in iso-lation. Sponge Bobcharacters AshleyHolland and PenneMcMorrough of theMedicine Room cele-brated with her.

SETH

DIX

ON

The way the word survivor is bandied about ontelevision these days, one would think that allit takes is a jaunt in the wilderness and—Bam!—you’re a survivor.

If only that were true.Children who have beat cancer and those who con-

tinue to fight the disease know the designation comeswith a hefty price tag rather than a million-dollar pay-off. The reward comes in knowing one has perseveredthrough the journey.

Perhaps that is why Maria Garrido hopped on aplane from Chile to visit St. Jude Children’s ResearchHospital in June. A newlywed, Maria brought her hus-band, Hugo, to see the place where, as a young girl, shewon her battle with Hodgkin disease. “St. Jude is a partof me,” she says. “It feels so good to be back. It’s a partof my history.”

Howard Jernigan understands. He cherishes his sta-tus as a cancer survivor. “I didn’t ask to have cancer,but it is something that has made me who I am today,”says the 32-year-old from Kentucky who overcame aneye tumor as an infant.

Jernigan and Garrido were among more than 400patients and family members who found their way backto St. Jude for the hospital’s Seventh Annual St. JudeCancer Survivors Day. It’s a time to celebrate life withpeople who know what it means to muster up thecourage to fight a callous opponent called cancer.

Surviving and thrivingJernigan was just one-and-a-half years

old when doctors told his mother, SandyRobinson, that he had retinoblastoma.After three decades, her eyes still well upat the thought of his illness. “As a parentyou don’t expect that you’ll be thinking ofyour baby in terms of life or death,” shesays. “St. Jude pulled us through. Theyproved that you can have cancer and stillgo on to lead a normal life.”

More and more patients have indeedgone on to lead “normal” lives, thanks toadvances in cancer treatment that havedramatically improved cancer survivalrates since St. Jude opened more than 40 years ago. In 1962, the overall pedi-atric cancer survival rate was about 20percent. Today, more than 70 percent ofall pediatric cancer patients survive theirdiseases. An estimated 8.9 millionAmericans are now liv-ing with and beyondcancer diagnoses.

A survey of patientswho attended SurvivorsDay at St. Jude showedthat patients have goneon to lead productivelives as students, teach-ers and business owners.Some even have a taste for adventure withhobbies ranging frommotorcross racing and

hang gliding to storm chasing and cliff jumping.

The spirit of the survivors would be an inspiration to St. Jude founder DannyThomas, said an emotional Richard C.Shadyac, national executive director ofALSAC, the hospital’s fund-raising arm.“Danny had a dream,” he told the gather-ing of survivors. “It wasn’t about brickand mortar or about raising money. Youare what Danny dreamt about. You arewhat we are all about: saving the lives of children.”

The St. Jude celebration was held inconjunction with National CancerSurvivors Day and offered former andcurrent patients a chance to tour theexpanded hospital, meet with staff members and attend workshops thataddressed the unique concerns of being cancer survivors.

“You’ve taken that first step—surviv-ing; now you have to face other issues,”Stuart Kaplan, MD, told survivors at theevent. Kaplan, who conducts follow-upcare at the St. Jude After Completion ofTherapy Clinic, says events like SurvivorsDay are important.

“They give people a chance to learnabout issues that affect their lives post-treatment, such as fertility, stress andaccess to care,” Kaplan says. “It givesthem a chance to network with other sur-vivors, and maybe to reconnect with someold familiar faces.”

A family affairWhen St. Jude patients Amanda Lyon

and Wendy Davis shrieked, hugged andgiggled after spotting each other at theSurvivors Day event, no one seemed sur-prised. They are teenagers, after all. Butthe second set of squeals—from theirmothers—got everyone’s attention.

“It’s like seeing long-lost family,”explains a giddy Teresa Davis, stillclenching Sue Lyon’s hand. “Our daugh-ters went through this together and so didwe. It’s wonderful to be with each otheragain under much better circumstances.”

Davis, from Memphis, and Lyon, fromIllinois, say that Survivors Day is just asimportant for family members as it is forthe actual cancer survivors.

“We were the ones beside them for the surgeries or awake all night when they were sick,” Lyon says. “They wereso young that they sometimes don’tremember how bad it was or how farwe’ve come.”

“But we know,” says Davis. “Wemoms remember everything. It’s onething to celebrate with our friends andfamily; but there is something specialabout celebrating life with people whowalked the walk with us. They were onthe same path, so they know what it’s likewithout even saying a word.”

The inner strength of a true survivorcan shine boldly even in the twinkle of aneye. After licking cancer, tackling thewilderness would be a walk in the park.�

The Art of SurvivalSt. Jude cancer survivors

come home to celebrate.

BY TANUJA COLETTA

Maria Garrido from Chile jumped at the chance toreturn to St. Jude and show her husband the placewhere she overcame Hodgkin disease.

PHOTOS BY LAURA HAJAR


Seventeen-year-old Sarah Johnson of Illinois and 6-year-old Drake Massengill of Mississippi were two of morethan 400 patients and family members who attended thisyear’s Cancer Survivors Day.

Leukemia survivor Freddrick Hardin attended Survivors Day festivities with hisfiancée, Shalondria White, and Kylan White.

12 Promise Autumn 2003 Autumn 2003 Promise 13

Children around the world have arenewed interest in learning chess afterreading about fictional hero HarryPotter playing Wizard’s Chess, a brutalvariation of the classic board game.When a player makes a move in

Wizard’s Chess, the game pieces come to life andwage an actual battle. Fighting cancer is much likeplaying Wizard’s Chess. Each move must be wellplanned and calculated or the results can be deadly.

The scientists in Molecular Pharmacology at St.Jude Children’s Research Hospital are like grandmasters in a chess match. Each attack they make atcancer is thoughtfully considered and based onknowledge that they have gained through manyyears. Still, they continue searching for the best strat-egy—a series of moves that will lead them to check-mate and victory. They want to corner the enemyking, the deadly cancer cell, and give him no choicebut to kill himself through apoptosis (sometimescalled programmed cell death or cell suicide). Arecent study brought these scientists one importantstep closer to finding that winning strategy.

The discovery, published in the journal MolecularCell, suggests that drugs designed to activate apopto-sis could be effective anti-cancer therapies. This strat-egy would target specific molecules in the cancer cellrather than rely on typical chemotherapy, which has

serious side effects that degrade quality of life forcancer patients.

Blocking an attackThe St. Jude team simulated cell suicide in the

laboratory by treating cancer cells with a drug calledrapamycin. This drug blocks the action of acell protein called mTOR. That protein canactivate a biochemical pathway that leads tocell proliferation (growth in numbers).

Peter Houghton, PhD,chair of St. JudeMolecular Pharmacol-ogy and senior authorof this study, says thatblocking the activity ofmTOR with rapamycintriggers a deadly bio-chemical pathway incells that lack agene called p53.This pathway,the JNK

Like grand masters in a chess match, St. Jude scientists seekthe best strategy for vanquishing the enemy—the cancer cell.

BY LOIS M. YOUNG

StrategicScience

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A couple of months ago, more than 450 seniors in an Illinois high school cinched up new backpacks,sharpened No. 2 pencils and experienced a frisson ofexcitement as they began their last year of school. Butone of their classmates was absent. Tammy Jackson hasn’t attended school in her hometown since her soph-

omore year. She hasn’t been playing hooky; Tammy hasbeen completing her assignments at St. Jude Children’sResearch Hospital. While undergoing therapy for a soft-tissue cancer called rhabdomyosarcoma, she keeps upwith her studies through the St. Jude School Program.

Many patients undergoing treatment for cancer or

cascade, causes programmed cell death.Sincep53 is mutated and inactive inabout half of all forms of cancer, thisnew discovery could potentially lead tomore effective treatments for a widerange of cancers.

“Shutting down synthesis of proteinscritical for cell proliferation sends thecell into a crisis,” Houghton explains.“The cell activates a protein calledASK1, which is at the top of the JNKcascade. ASK1 then sets off the cascadeand causes the cells that lack p53 toself-destruct.”

In normal cells that have a functionalp53gene, a protein called p21 isexpressed, and in the presence ofrapamycin, it binds to ASK1 and makesit inactive. This process prevents healthycells from undergoing cell suicide. Forthis reason, therapy based on the findingcould bypass the side effects of typicalcancer treatments. Most of these sideeffects occur because healthy tissues arekilled along with the cancer cells. Someof these treatments also cause damage tothe DNA of healthy cells.

“We have been working on this path-way for about 10 years now, but when itwas first found no one thought it wasterribly important,” Houghton says.“Suddenly, it is a major focus.”

A formidable opponentTrying to activate a cell death cas-

cade in a cancer cell is much like agame of chess. Specific moves can startthe death process or thwart it. One gamepiece, a growth factor called IGF-I, pre-vents rapamycin from activating ASK1,and shuts down the pathway that leadsto cell suicide. “So any drug therapythat targets mTOR with the intent ofinducing cell death should also include adrug that targets IGF-I signaling,”Houghton says. “That double hit wouldleave the cancer cell no choice but toself-destruct.”

Currently, several drugs that affectIGF-I signaling are in preclinical trials.The next step is to test these drugs andrapamycin in patients who have the

kinds of cancer that might be affected.Plans are underway at St. Jude for clini-cal trials of two drugs that are analogs(slight chemical modifications ofrapamycin). The trials will target neu-roblastoma, a cancer that affects thenervous system. Scientists alreadyknow that about half of all neuroblas-toma cell cultures are sensitive torapamycin. Researchers need to see ifrapamycin does the same thing in can-cer cells in the human body that it didin controlled laboratory experiments.

The new strategy“These are a new class of drugs

called signal inhibitors as opposed tothe cytotoxic drugs that are so prevalentin cancer therapy today,” Houghtonexplains. “These new drugs focus onvery subtle, very specific cell func-tions—in this case on the function of asingle protein in the cancer cell.

“Ultimately, we need to understandhow to put these various signalinhibitors together to kill tumor cells. Itmay be that different select inhibitorsare combined for neuroblastoma, andothers will be needed for targeting otherspecific cancers.”

Houghton, who has been at St. Judefor 26 years, feels that he is in the bestplace in the world to make this happen.“St. Jude is absolutely a unique place,”he says. “My interest is in pediatricsolid tumors, and this is the premiereplace to study them. I also do not knowof another institution with the same abil-ity to quickly translate the science we doin the lab to the clinic.”

St. Jude scientists are able to acceler-ate this process for two reasons. Thefirst is the enormous collaborationbetween physicians and scientists.Within the St. Jude cancer center severalprograms are co-led by physicians andscientists, so the discussions betweenbasic scientists and clinical physiciansare ongoing. Second, the funding base is strong. Along with both public andprivate grants, the research is supportedby many individual donors who give

to St. Jude through ALSAC, the hospital’s fund-raising organization.

“We have been quite successful withthis type of translational program. Withthe camptothecin-based drugs, the basicscience and preclinical trials for thoseinhibitors were done at St. Jude,”Houghton says. “Now, several nationalclinical trials are based on what we havedone here with those drugs.”

Mastering the gameThe great chess masters say that

chess is a game of skill, not luck. Theonly way to win is to have full knowl-edge of how each game piece can moveand to defend each attack with astronger counterattack. At St. Jude, sci-entists are working as fast and as dili-gently as they can to gain the knowledgethey need to lure cancer into a fatal trap.Although there are no easy victoriesagainst this formidable opponent, eachsuccessful research study brings us clos-er to the day when all cancer patientswill be champions.�

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Peter Houghton, PhD, chair of St. JudeMolecular Pharmacology, and his colleaguesdiscovered that drugs designed to activate cellsuicide could be effective anti-cancer thera-pies. This strategy would target specific mole-cules in the cancer cell rather than rely ontypical chemotherapy.

St. Jude patients keep up with their studies through the hospital’s School Program.

BY ELIZABETH JANE WALKERA Class Act

Attorney Carmel Morgan works as a volunteer teacher through the School Program, teachingJustin Wilson, a seventh-grader from Wisconsin. “We work together about twice a week forabout an hour-and-a-half each time,” Morgan says. “Whatever he feels up to. You have to bepretty flexible when you’re working with patients.”

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For more information about Houghton’sresearch, visit www.stjude.org/media.

Autumn 2003Promise 17

other catastrophic diseases at St. Judemust leave their hometowns, friends andschools for months or years at a time.Children often fear that their classmateswill surpass them academically. TheSchool Program helps patients continuetheir normal educational activities. Forchildren who are thrust into an unfamil-iar hospital environment, school offers aregular routine, achievable goals, a feel-ing of control and a sense of normalcy.

First-class facultySt. Jude employees Lou Ann Vaught

and Justin Gardner are fully certifiedteachers who provide instruction for thehospital’s patients; the Memphis CitySchools system has also assigned a full-time high school teacher, DennisMedford, to St. Jude. A cadre of volunteers offering extensive teachingand tutoring experience augments this faculty.

When a student enrolls in the SchoolProgram, a St. Jude teacher makesarrangements to obtain textbooks andother materials from that child’s homeschool. Assignments may be faxed,mailed or e-mailed to the hospital. The

St. Jude teacher then works with the student for at least three hours per week, assigning grades and mailingthose scores back to the home school.Occasionally, a school system removes a patient from its rolls because of attendance requirements; when that happens, Dennis Medford gives the stu-dent a “school home” in the MemphisCity Schools.

The English language can pose a barrier for some patients who come to St. Jude for treatment from other

countries. That’s why English as aSecond Language (ESL) classes aretaught twice a week at Target House.Memphis City Schools ESL teachersteach these classes.

Classy classroomsThe hospital’s School Program used

to be based in a one-room facility thatwas funded by proceeds from theFederal Express St. Jude Classic golftournament. In the past two years, theprogram has expanded to include a class-room for kindergarten through sixthgrades and another for seventh through12th grades. This setup ensures flexibilityfor both teachers and students.

“Sometimes all the kids scheduledfor the morning show up in the after-noon,” says Laurie Leigh, director of theSchool Program. “That is the essence ofthis place—patient schedules change andhow they feel changes from morningto afternoon.”

But teachers and patients do notrestrict instruction time to the classroom;David Morgan can attest to that fact. Foralmost two years, he has kept up withhis schoolwork while battling acutemyeloid leukemia. Angie Morgan saysthat her son’s classes have occurred inevery corner of the hospital.

“Lou Ann comes to the hospital roomand works with him now,” says Angie,as David sleeps in a nearby hospital bed.“When we were outpatient, David wentto her classroom. And when we were inthe Medicine Room all day, she’d evencome in there and work with him.”

Vaught recently discovered thatDavid’s classmates in Missouri werehaving their portraits made for the year-book. She immediately procured a jack-et, tie and dress shirt and arranged forthe hospital’s photographers to take astudio portrait in David’s hospital room.“It was perfect timing,” says Angie, asshe gazes at the portrait. “All of his hairfell out the very next day.

“Oh, my gosh, we love Lou Ann,”Angie continues. “If you just mentionsomething, not thinking, the nextthing you know she’s there with it.

She’s way more than a teacher; she’svery special to us.”

Bound for home School Program services do not cease

when a student finishes treatment andprepares to return home. Because offatigue or other issues, children mayneed to ease back into a regular schoolenvironment. That may mean having apart-time homebound teacher and attend-ing school part time. “We help parentsand schools to understand those optionsand to access them,” says Leigh. “Thenwhen the student is ready to go back fulltime, it helps them make that transitionslowly without a lot of pressure that theyreally don’t need.”

When the student does return to theclassroom, employees from the School

Program and Child Life Services maypresent a school reentry presentation forthe patient’s classmates. They plan thepresentation with input from the patient.The program can include discussions ofdiagnosis, treatment, side effects,chemotherapy, baldness or other topics.

Leigh says the reentry presentationhelps ease the transition into the class-room by demystifying the disease. “Wehelp them understand that cancer is notcontagious; that you don’t get cancerbecause you were bad,” she says. “If youexplain things, then they accept it. But ifyou don’t explain things, they makethings up.”

If a patient lives more than an houraway from Memphis, St. Jude employ-ees can still help school officials organ-ize a re-entry presentation. Leigh mailsbooks and films and talks by phone to

guidance counselors or school nurseswho will be using the materials.

Looking forwardLast year more than 130 patients took

advantage of services offered throughthe School Program. Several of thosestudents plan to graduate from highschool in May of 2004. Tammy Jacksonis one of those students. Throughoutthree-and-a-half years of rigorous treat-ment, she has excelled in honors mathand chemistry classes; accepted an invi-tation to join a national honors society;and scored high on the ACT collegeadmissions test, which she took at St. Jude. Tammy is eagerly anticipatinggraduation, followed by college and acareer—thanks, in part, to her participa-tion in the St. Jude School Program.�

Memphis sculptor and painter Joyce Petrina volunteers her services one day each week to help students completeart requirements for their classes. “I love working with the kids,” she says. “There’s a lot of talent there.” Workingon art projects are (from left) Brittany Melton, Kelsey Tatum and Hayley Arceneaux.

Above: After excelling in aca-demics through the St. JudeSchool Program, TammyJackson is eagerly anticipatinghigh school graduation in thespring of 2004.

At left: Teacher Lou AnnVaught works with DavidMorgan as he recuperates fromhis second stem cell transplant.Below is David’s senior picture,which was taken at St. Jude


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The knot was the size of a golf balland as hard as a rock. At first, no oneknew what it was, what to do about itor why it was growing so fast. “It wasthe most terrifying time of my life,”says Brandi Hilliard. On September17, 2001, the Oklahoma mother gavebirth to a beautiful baby girl shenamed India Grace. But Brandi’s joyover her baby’s arrival was soonentwined with fear about a large bulgein the calf of India’s left leg. Brandisays her daughter’s leg looked tight“like she had been working out.”

In the first week of her life, Indiaunderwent extensive diagnostic tests aswell as a biopsy, all of which pointedto cancer. With no time to waste—thegrowing tumor was tearing throughIndia’s skin—her doctors immediatelysent the family to St. Jude Children’sResearch Hospital. “It was a tough

couple of days,” says Brandi. “Indiahad been bleeding from the biopsysite. We honestly didn’t know if shewould make it.”

At St. Jude, surgeons stopped thebleeding and determined India’s cancerwas a rare infantile fibrosarcomaknown for rapid growth. The tumorwas so large that Brandi could nolonger wrap her hand around India’sleg. After consulting with Brandi andwith India’s St. Jude pediatric oncolo-gist, the surgeons decided to shrink thetumor with chemotherapy before per-forming surgery.

“Amputation is the way many doc-tors would manage India, but as pedi-atric surgeons we don’t manage casesthat way,” says Stephen Shochat, MD,chief of Surgery. “When we are deal-ing with children, it’s important to usto retain function. We want to cure the

cancer but not by performing a muti-lating procedure.” Instead, Shochat’steam takes what he calls a “multi-modality” approach to patient care,working closely with the hospital’soncologists to find the best ways totreat patients like India who wouldotherwise be disabled for life if sur-geons opted for amputation.

“It was all so much to digest,”remembers Brandi. “But everyone was

Surgeons, operating room nurses and anesthesiologists worktogether like a well-oiled machine to treat St. Jude patients.

Smooth OperationBY TANUJA COLETTA

More than 1,200 surgicalprocedures were performedat St. Jude last year.

Stephen Shochat, MD; Alberto de Armendi, MD; andCathy Love, RN, are part of a team that works closelyto ensure the best surgical care for St. Jude patients.

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so good at explaining it all to me so Iunderstood exactly what was going on.They have always gone above and beyondfor us.” Brandi will never forget one nightin particular when she had been up withIndia into the wee hours. Brandi regularlylulled her baby to sleep singing the hymn“God is So Good.” But this night Brandiwas exhausted, and her voice simply gaveout. “Immediately, a surgery staff memberwho was standing nearby stepped up andstarted humming the rest of the song toIndia where I left off.”

Four months of chemotherapy success-fully shrank the tumor to an operable size.Finally the day arrived for India’s opera-tion. Brandi dressed in scrubs and joinedher daughter in the operating room untilthe anesthesia started working. St. Judeoffers families the unique privilege ofallowing parents in the operating room tomake young patients as comfortable aspossible before an operation. “She was sotiny that you just wondered how she’d getthrough it,” says Brandi. “Getting to go inthere with her and stay until she sleptmeant so much to me.”

Like most procedures involvinginfants, India’s surgery was complex.Shochat and his team were able to workaround arteries to keep the blood circulat-

ing and protect nerves to retain functionof the leg while cutting out the mammothtumor. The procedure was followed byanother round of chemotherapy to be surethe cancer was in remission. Afterward,diagnostic tests revealed that the tumorwas gone. “It was a miracle,” said Brandi.“My whole family was jumping upand down.”

One-stop treatmentThe miracle doesn’t surprise Shochat,

who has expanded the hospital’s SurgeryCenter from modest beginnings sevenyears ago. “Many people have no idea thelevel of complex procedures, especiallywith infants, that we are doing here,” hesays. More than 1,200 surgical procedureswere performed last year, bringing thehospital a long way from the days whenpatients were taken to the former St. Joseph Hospital or LeBonheurChildren’s Medical Center for surgery.

“We are doing more than 90 percent ofour operations right here,” says Shochat,pointing to the state-of-the-art surgicalsuites housed on the third floor of thePatient Care Center. The facility was builtespecially equipped to handle infants andvery young children. “There is no longer

a need for referring physicians to sendchildren elsewhere for surgery,” Shochatsays. Instead, patients can have their ini-tial surgical evaluations, operations andpostoperative treatments all at St. Jude.

The Surgery department comprisesnine divisions: dentistry; general pediatricsurgery, which includes its basic researchcomponent; gynecology; neurosurgery;ophthalmology; orthopedic surgery; plastic surgery; urology; and otolaryngol-ogy, the study of diseases affecting the ear and larynx.

Besides its role in clinical care, thedepartment is also on the cutting edge ofresearch, with members actively involvedin the development of protocols. Shochatand Andrew Davidoff, MD, have doneextensive work with neuroblastomas. Thedepartment is also looking forward to newtechnologies on the horizon, including theuse of robotics with surgery.

“It sounds very Star Wars,but it lookspromising, Shochat says. Bhaskar Rao,MD, specializes in osteosarcomas and has

pioneered St. Jude’s efforts in limb-salvage surgery.

Shochat is quick to point out that thehospital’s high level of surgical carewouldn’t be possible without the team-work among his department, theOperating Room nursing staff andAnesthesia division. “We truly work inconcert,” he says. “We have a collabora-tive approach to treatment that is notfound everywhere.”

A cut aboveThe collaboration is probably best

described as a medical “ballet” of sorts,complete with acts done in surgical phases, dozens of imaging and monitoring props and a cast of expertcharacters, everyone from surgeons and nurses to anesthetists and medicalindustry representatives.

Well before the first incision is madefor an operation, operating room nurses

scrub in and begin the tedious process oflaying out the hundreds of instrumentpieces—sterile clamps, scalpels and othernecessary tools. The staff consists solelyof registered nurses, as opposed to thesurgical technicians found at many otherinstitutions. Almost all of the St. Judenurses are cross-trained, which means thatthey can perform almost any role—whether that means scrubbing in, circulat-ing or working in the recovery room.

Operating Room Manager DaphnePhillips, RN, explains that cross-trainingis especially important at St. Jude. “Wehave a lot of specialty doctors coming in,so nothing is routine,” she says. “We haveto be very flexible.” Nursing SurgicalServices Director Cathy Love, RN,agrees. “Our nurses are highly skilled,compassionate and committed to provid-ing the highest quality of care,” she says.

The anesthesiologist also begins hiswork early, first meeting with the family

to check the patient’s latest health status.This preoperative assessment is anotherunique procedure at St. Jude; mostpatients at other institutions meet withtheir anesthesiologists days, even weeks,before surgery.

“We don’t take chances with our chil-dren,” says Alberto de Armendi, MD,chief of Anesthesia. “A child’s health canchange rapidly, so what shows up in anevaluation one day may be different fromwhat is going on when you check themorning of surgery. Every kid at St. Judeoffers a challenge because every child hasunique complications from their disease.That’s why we tailor our treatment to theindividual and not to the disease.”

The anesthesiologist’s work is hardlydone when the last stitch is sewn in theoperating room. Patients are closely moni-tored in the Post-Anesthesia Care Unit tobe sure they wake up with no problems.On follow-up visits, children who experi-ence aches and pains as a result of their

diseases or the medications used in treat-ment are referred to the St. Jude PainManagement Service. A team of anesthe-siologists and other clinicians worktogether to solve those pain issues. “Webelieve in the total care of the patient,”says de Armendi. “That is the ideal whenyou are dealing with children, and that’swhat makes what we do here at St. Judereally different from what you would see elsewhere.”

Among the 10,000 casesAnesthesiology handles each year, deArmendi notes that his department rou-tinely provides sedation services to keepchildren still during diagnostic tests andother procedures in areas outside theOperating Room. Anesthesiology also hasa growing research component keen onunderstanding diseases on the molecularlevel and finding new drugs for treatment.In fact, St. Jude hosted a regional confer-ence in May that brought the top pediatric

anesthesia doctors and researchers fromthe Mid-South together for the first timeto discuss the latest topics in the field.“There is still a lot to learn in pediatricanesthesiology,” says de Armendi. “We’realways on our toes.”

Happy endingToday, it’s 2-year-old India Grace

Hilliard who keeps everyone on their toes.The only reminder of her tumor is a thin,tiny scar, which her mother calls “themost beautiful thing I’ve ever seen.” Indiahas full use of her legs and runs her fami-ly ragged if they dare chase her. She evenplays in the pool with her sister Zoë Bree,and brother Levi. Brandi attributes herdaughter’s success to “a lot of prayers andthe blessed people who make up St. Jude.The whole surgery staff treated India likeshe was their baby. I can’t say enough goodthings about them.”

Perhaps Lunetha Britton, RN, a sur-gery nurse in the Ambulatory Care Unit,summarizes it best: “There is a cama-raderie and humility among the doctorsand nurses and staff of all the differentdisciplines that mesh at St. Jude allbecause of one basic thing: we truly careabout what happens to these children.When they walk through those doors, theybecome ours and we want only the bestfor them always.”�

“We are doing more than 90 percent of our operationsright here. There is no longer a need for referringphysicians to send children elsewhere for surgery.”

The collaboration among staff members in Surgery, the Operating Room andAnesthesia is probably best described as a medical “ballet” of sorts, completewith acts done in surgical phases, dozens of imaging and monitoring props and acast of expert characters, everyone from surgeons and nurses to anesthetists andmedical industry representatives.

The Operating Room staff consists solely ofregistered nurses, as opposed to the surgicaltechnicians found at many other institutions.Almost all of the St. Jude nurses are cross-trained, which means that they can performalmost any role.

Two years after her operation, India GraceHilliard has complete use of her legs andleads the active life of a normal toddler, saysher mother, Brandi.

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�� WITH A STRUT AND A SASHAY along a catwalk, the patients ofSt. Jude Children’s Research Hospital helped Hancock Fabricskick off its second annual “Quilt of Dreams” promotion.

Thirteen St. Jude patients paraded through the DannyThomas/ALSAC Pavilion, wearing clothing made from the 20different fabric designs inspired by the artwork of St. Judechildren. The fabrics were sold this summer in HancockFabrics’ 440 stores nationwide.

The clothing modeled by the patients was produced by 13designers in the Martha Pullen Sewing Family. Children par-ticipating in the fashion show were also featured in the Julyissue of Martha Pullen’s Sew Beautifulmagazine.

In 2002, Hancock Fabrics created the “Quilt of Dreams”promotion to help generate even more support from the com-pany’s employees and customers. “We always knew we want-ed to do more for St. Jude, and we developed the ‘Quilt ofDreams’ promotion during a small brainstorming meeting todiscuss our St. Jude partnership,” says Larry Kirk, chief exec-utive officer of Hancock Fabrics. Kirk is also a member of theSt. Jude Professional Advisory Board, which provides guid-ance and support for ALSAC’s fund-raising efforts.

“It has quickly become a heart-warming way for our cus-tomers and employees to give something to the children thatthey have put a lot of time and love into making,” Kirk says.

“I don’t think I could ever be asproud of a group of people as I amour customers and employees.They are heroes in my mind fortheir love and support of the chil-dren of St. Jude.”

During the promotion, cus-tomers were invited to purchase thespecial St. Jude fabric and createlap quilts using the fabric and thedreams of St. Jude patients. Eachquilter chose a patient from a listprovided at Hancock Fabricsstores. St. Jude received 30 centsof the purchase price of each yardof fabric Hancock sold during thepromotion.

Hancock customers andemployees who designed quilts

BY JOE HANNA

� �QuiltsHaute Times, Cool

Whether they’re strutting their stuff on the runway or bundling up undercozy quilts, St. Jude patients appreciate the efforts of Hancock Fabrics.

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R could enter their designs in “Quilt of Dreams” contests atlocal Hancock Fabrics stores. The quilts were judged fororiginality and best use of theme. All quilts donated tothe hospital were displayed during a recent quilt show(see related photo on inside back cover).The quilts willbe given to patients or used by St. Jude for fund-raisingpurposes. All monies raised from the quilts will go tosupport the hospital’s lifesaving work.

Hancock customers were also able to either donate $1and have their names displayed on pin-ups in their localHancock stores or purchase limited-edition quilter’s pinsfor $5. Ninety percent of the purchase price of each pinwent to the hospital.

Hancock’s goal for the 2003 promotion is to raiseenough money to fund the hospital for one day, orapproximately $1 million. Last year’s “Quilt of Dreams”promotion raised more than $502,000 for the hospital.

Hancock Fabrics became a St. Jude partner when theybegan holding hole-in-one golf tournaments to benefit thehospital. During the past six years, Hancock Fabrics hassold cookbooks in its stores, displayed canisters at cashregisters and held local events like bake sales, craft salesand garage sales. Hancock is also a part of the St. JudeEmployee Giving program, “Companies Care for St. Jude Kids.”

“Our employees’ grassroots fund-raising efforts andsupport of St. Jude has helped make our contributionwhat it is today,” Kirk says. “Everyone is behind our goalto raise $1 million for the hospital, and we really have aspecial relationship with the kids, their families and theSt. Jude staff. It’s amazing to think that we started just sixyears ago with a little hole-in-one golf tournament inTupelo, Mississippi, which raised only $36,000.”

Before the fashion show, patient Caitlin Adkins toldthe crowd of parents, doctors and Hancock executives,“Thank you, Hancock Fabrics, for your generous dona-tion. Your gift gives the kids at St. Jude a chance at life.”

And Caitlin knows. Immediately after the fashionshow, she had her coming-off-chemo party, signifying theend of her chemotherapy treatments for Ewing sarcoma, abone cancer.

“That is what it is all about,” Kirk says.�

St. Jude patients modeling clothesmade from fabric designs inspired bypatient artwork are (from left):Caitlin Adkins; Alexis Gilmore, whogives an enthusiastic hug to HancockFabrics CEO Larry Kirk; Yiressy

Izaguirre and Hugo Zuniga.



I have led a pretty successful life bymost people’s standards. I’ve hosted andbeen a guest star on several televisionshows and enjoyed a prosperous modelingcareer, but nothing has meant more to methan my involvement with the children atSt. Jude Children’s Research Hospital.

Although I’d always heard about St. Jude, my involvement with the hospi-tal began when Marlo Thomas, daughterof hospital founder Danny Thomas, invit-

ed me to attend a fund-raising event inLos Angeles. St. Jude soon found a spe-cial place in my heart.

In 1998, I had the opportunity to visit

the hospital. I didn’t know what to expect,so I have to admit I was initially shockedto see the children with no hair and wear-ing masks. But once I saw the facility andvisited with the kids and their families, I

realized that St. Jude is aplace where miracles hap-pen every day.

During that visit, I metseveral families with whomI have kept in contact. Onepatient I met was Jessica, a9-year-old girl with a diag-nosis of acute lymphoblas-tic leukemia. She had losther hair from chemotherapy,but she didn’t let that get in

the way of her bubbly personality. Ilearned from Jessica and many other chil-dren that St. Jude is a happy place, andthat despite what they’re going through,the kids are okay there.

I recently received a letter fromJessica, who is now 14. She included apicture with the letter, and I couldn’tbelieve it was the same little girl I’d met a few years earlier. She looked like asupermodel! In that moment, I knew that my commitment to St. Jude wasworthwhile.

I believe everyone has a purpose inlife, and mine is to educate the communi-ty about St. Jude. I am fortunate to beable to work with an organization dedicated to such a noble cause.

The one message I would like to getacross to people is that you don’t have toclose your eyes to what these children are facing. As tragic as it is to know that a child is suffering from a catastrophic disease, it’s very important to see what’sgoing on at St. Jude. Once you see it, you realize that there is hope and that we need to do what we can to feed that hope.

It’s just amazing to witness the mis-sion of the hospital and to see the number of kids being saved from suchdevastating diseases. St. Jude is truly anamazing place.

A stitch in time saves livesBrightly colored quilts covered nearly every surface in this Tupelo, Mississippi, convention center in September.More than 3,500 quilts were donated to the hospital following “Quilt of Dreams” contests at Hancock Fabricsstores around the country. The handmade quilts will be given to patients or used by St. Jude for fund-raisingpurposes. Read more about Hancock Fabrics’ Quilt of Dreams promotion on page 22.

“I realized that St. Jude is a place where miracles happen every day.”

Daisy Fuentes and Jessica Turri in 1998; andJessica as a teenager.

Finding a Purpose

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Pe r s p e c t i v e

Daisy Fuentes has served as a TV newsanchor, attracted a large following as aVJ on MTV, hosted a talk show andworked as worldwide spokesmodel forRevlon. Also a soap opera and film star,Fuentes is a loyal St. Jude supporter,helping the hospital through promotionaland fund-raising campaigns.

promise – autumn 2003€¦ · lisa baker bonnie cameron leslie davidson pat flynn, md mark...

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