Summer 2006

John Alston’s song of the soul page 12

isPromise a quarterly publication of the Department of Public Relations St. Jude Children’s Research Hospital 332 N. Lauderdale St. St. Jude Children’s Research Hospital was founded by the late Memphis, Tennessee 38105 St. Jude Children’s Research Hospital’s A publication of St. Jude Children’s Research Hospital Summer 2006 entertainer Danny Thomas. It opened February 4, 1962. The institution was created because mission is to find cures for children with catastrophic diseases through research Promise and treatment. of a promise Thomas made during the depression era to St. Jude Thaddeus, the patron saint Features

Hospital Director and 4 Three Times is a Charm of the hopeless. Chief Executive Officer Patient Sierra Josephsen William E. Evans, PharmD 7 ALSAC Chief Executive Officer A Hole-In-One John P. Moses Growth of a tournament “Show me my way in life,” Thomas prayed. In return, Thomas promised to build St. Jude ALSAC/St. Jude 8 Tumor Wars Senior Vice President of Attack via molecular-targeted therapy Communications and Thaddeus a shrine. That shrine became a world-class research institution that treats children Public Relations 10 Jerry Chipman Bird’s Eye View of Flu Sequencing the genomes Director of Public Relations regardless of race, color, creed or their ability to pay. This remarkable event also inspired the Judith W. Black 12 Song of the Soul ALSAC Vice President Patient and pianist John Alston name of this magazine, of Communications George Shadroui 16 Bridging Countries to Save Lives Outreach to Chile Publications Manager and Editor Elizabeth Jane Walker . 17 A Moveable Feast Promise Art Director Kathleen and Louis Rezzonico Jessica W. Anderson Photo Editor 18 Catering to Patients Jere Parobek Room service? No problem. Photographers 20 Seth Dixon On Target Ann-Margaret Hedges A home-away-from-home Contributing Writers Thad Caperton Ruth Ann Hensley Bonnie Kourvelas Victoria Tilney McDonough Tiffany Strange Carrie L. Strehlau Guest Author Scott Hamilton Highlights Editorial Advisory Board Lisa Baker 2 News and Achievements Leslie Davidson Pat Flynn, MD Mark Hendricks Perspective Christine Kirk Marc Kusinitz, PhD 24 Ava Middleton Scott Hamilton Carlos Rodriguez-Galindo, MD The Gift of Giving Carrie L. Strehlau Penny Tramontozzi Sally Wiard John Zacher St. Jude Children’s Research Hospital is an Equal Opportunity Employer. For inquiries about stories in this publication, call the Public Relations department at (901) 495-2125 or e-mail [email protected]. Visit our Web site at www.stjude.org. Articles and photos may be St. Jude Children’s Research Hospital, Memphis, Tennessee reprinted with permission. ©2006. On the cover: St. Jude patient John Alston. Photo by Seth Dixon. Service Professional Conference in (CML), another blood cell cancer caused without causing severe diarrhea. A report Denver, Colorado, in May. by the Bcr-Abl mutation. on this study appears in the February 1, The findings suggest that IL-7 block 2006, issue of the Journal of Clinical the ability of imatinib to cause remis- Oncology. H i g h l i g h t s Genetic insights sion of ALL in patients with the Bcr-Abl The usefulness of irinotecan, a drug St. Jude investigators have discov- mutation and loss of both Arf genes. used to treat many pediatric solid tumors, ered the role of several key genes in the They point to a strategy for overcoming is limited by the side effect of diar- development of the retina, and in the pro- this resistance: developing novel drugs rhea. The drug is commonly given only SETH DIXON cess have taken a significant step toward that block the effect of IL-7 on cells. A intravenously, which requires visits to understanding how to prevent or cure the report on this work appears in the April the hospital. St. Jude clinicians sought to potentially deadly eye cancer retinoblas- 17, 2006, issue of Proceedings of the give it orally and co-administer it with toma. National Academy of Sciences. Charles an oral antibiotic to prevent and lessen Retinoblastoma that has spread out- J. Sherr, MD, PhD, a Howard Hughes the diarrhea. This also prevents the need side the eye is among the deadliest child- Medical Institute investigator and co-chair for repeated visits to the hospital for hood cancers, with an average survival of Genetics and Tumor Cell Biology, was each treatment. Wayne Furman, MD, rate of less than 10 percent. A key finding senior author of the paper. and Victor Santana, MD, from the Solid of the new study is that humans are more The Arf gene was discovered at St. Malignancies group were the paper’s lead susceptible to developing retinoblastoma Jude in 1995 in the laboratory of Sherr and senior authors, respectively. than mice, because mice can compensate and Martine Roussel, PhD, of Genetics for the loss of a gene critical to normal and Tumor Cell Biology. Roussel retinal development while humans cannot. and Richard Williams, MD, PhD, of The results of the study appear in the May Hematology-Oncology are co-authors of 3 issue of the open-access journal BMC the current paper. Biology. “Our study gives us important new information on the normal development Brain map of the retina and suggests new studies that Scientists at St. Jude have given could lead to the design of more effective investigators around the world free drugs to treat retinoblastoma,” said the access to a powerful tool for studying paper’s senior author, Michael Dyer, PhD, brain development. The Internet-based of Developmental Neurobiology. tool, called the Brain Gene Expression Map (BGEM), is one of the largest gene expression maps of an organ ever devel- Ray Romano, (center), star of the hit television show Everybody Loves Raymond, and his co-star, Unlocking ALL mystery oped, according to the researchers. They Brad Garrett, visited St. Jude recently. They are pictured here with St. Jude patient Chris Rasco. St. Jude investigators have used say the map will likely help scientists dis- laboratory models to determine why some cover the genetic origins of brain cancers, forms of acute lymphoblastic leukemia which could speed development of novel From nose to yes vaccine, which is injected, have not human flu viruses and H5N1—the bird (ALL) are extremely aggressive and resist drugs to treat them. Children with cancer who are espe- conclusively shown that it works effec- flu virus—suggests that it could protect a drug that is effective in treating a differ- The continual updating and comple- cially susceptible to influenza infection tively in children with weakened immune humans if an H5N1 virus mutates so that ent type of leukemia. tion of the BGEM Web site will be crucial because chemotherapy has weakened their systems, according to Jon McCullers, it can pass easily from person to per- The investigators found that the to scientists studying the development of immune systems might benefit from the MD, Infectious Diseases, senior author son, according to Richard Webby, PhD, combination of a mutation called Bcr-Abl the brain. In addition, many brain disor- ABCs of Cancer live attenuated influenza vaccine (LAIV) of a report on this work that appeared Infectious Diseases. and the loss of both copies of the tumor ders, such as tumors and some psychiatric Leave it to kids and teens to say what’s on FluMist®, according to results of a labora- in the March 1 edition of the Journal of “Such cross-protection against bird suppressor gene Arf in bone marrow cells diseases, are also believed to be caused by their minds. The ABCs of Cancer, created by tory study by St. Jude researchers. Infectious Diseases. and human influenza is considered by triggers an aggressive form of ALL; and gene mutations that arise during develop- St. Jude patients and permanently displayed The team demonstrated that LAIV researchers to be the ‘Holy Grail’ of flu that this aggressive form of ALL appears ment of this complex organ. in a hospital hallway, offers 26 views of living with cancer and the lessons learned from protected laboratory models whose vaccines,” Webby said. “Even if the bird to be fueled by the presence of a protein A report on the development and that journey. The ABCs of Cancer posters immune systems were weakened by two Successful vaccine test flu virus mutates so it becomes adapted called IL-7, which triggers cell growth. availability of the BGEM appears in the were started informally by Child Life as an drugs commonly used to treat children St. Jude researchers say they have to humans, this kind of cross protection The researchers showed that inactivation March 28 issue of PLoS Biology. expressive art project. Kids could choose a with cancer. LAIV is a commercial vac- taken a significant step in the develop- will allow the immune system to track of both Arf genes facilitated the multi- letter, design it and write a poem or some cine composed of three live but weakened ment of a vaccine produced by Vical Inc. and attack such an emerging new variant plication of leukemic cells that did not thoughts about their chosen word. The posters types of flu virus. It is administered that could protect humans against a bird without missing a beat.” respond to the drug imatinib (Gleevec®). A lot to swallow offer a sad and lovely and hopeful and joyful nasally rather than injected. flu virus. Webby presented the findings of the Imatinib is already successfully used St. Jude investigators have found a glimpse into the amazing minds of the young The laboratory model finding was The researchers reported that the vaccine study at the U.S. Public Health to treat chronic myelogenous leukemia way to administer the potentially life-sav- heroes who come to St. Jude. To see the entire important because studies with the older vaccine’s ability to protect against both ing anticancer drug irinotecan to children collection, visit www.stjude.org/ABCs.

 Promise / Summer 2006 Summer 2006 / Promise  PHOTOS ANN-MARGARET BY HEDGES Three Times Is a Charm

B y R u t h A n n H e n s l e y

“You’ve got to have hope,” says Sierra Josephsen. The three-time cancer survivor should know. Doctors at another institution instructed Sierra’s parents to make funeral arrangements for their daughter. Then the family found St. Jude, which had just begun a trial using the drug topotecan for Whether it is in the form of miraculous signs, lofty wishes or four-legged creatures, patients with Wilms tumor. “Some people say, ‘Three strikes, you’re out,’ but not at St. Jude,” says Sierra’s mom. “Three times is a charm.” three-time cancer survivor Sierra Josephsen is living proof that the adage is true.

was an autumn afternoon in a Passersby paid the girl little notice. Survivor breathing treatments, Sierra’s stomach The fourth most common type of cancer World®. No one imagined that during a suburban Illinois supermarket, They couldn’t possibly know that Sierra “We come to St. Jude with that doll was still distended. “Finally,” Sandy in children, Wilms tumor arises from the regular check-up, 14 months later, doc- and 5-year-old Sierra Josephsen had recently received her third cancer every time,” Sierra’s mom, Sandy, says, recalls, “I said to Sierra’s doctor, ‘Her disordered development of embryonic tors would announce that her cancer Itwas down to her last dollar. Some diagnosis…that a doctor had told her “because miracles do happen.” tummy does not look like Savana’s at kidney cells—immature cells that nor- had returned. might say she had fallen on hard times, parents, “You will be burying your child” Ed and Sandy Josephsen witnessed all.’” The doctor intently pressed on mally regress by birth but can become “I felt like I was shot in my chair,” and in many ways they would have been and that the family was anxiously awaiting a miracle the day Sierra and her identical Sierra’s abdomen, and the color drained cancerous if they persist into childhood. says Sandy, who remembers every right. But Sierra’s concerns went much a phone call from a hospital that offered twin sister, Savana, were born. “I was so from his face. “Let’s go down the hall Two days later, surgeons removed moment of that day with Rain Man-like deeper than mere finances. That day, the their last hope. happy that they were healthy,” Sandy says. for a chest X-ray and an ultrasound—and a 16-centimeter tumor and Sierra’s right adeptness. “It was September 11, 2002,” vibrant girl sporting a bob of golden hair Suddenly, Sierra felt a tug at the end The girls pursued the inquisitive, call your husband,” he said. kidney. It was a frightening blur of activ- Sandy says. “Bad date.” and shimmering hazel eyes was consumed of the chain. With a resounding thud, playful and boisterous activities that all Sandy called her sister first because ity for the Josephsen family, but after the Sierra’s cancer had returned in with only one thought—to win; to beat the the crane released its treasure into the toddlers enjoy, but when they turned 3½ she lived nearby. “Sue, you’d better get successful surgery they could breathe exactly the same place as before, but the odds of the game she was playing. collection bin. “I won!” she breathlessly years old, Sandy noticed some disturbing over here. I think they’re going to tell again. “Sierra was a stage II, which tumor was large and the prognosis was While her mother scanned the aisles exclaimed, clinging to a small doll wear- changes in Sierra. “She would cough until me that Sierra has pneumonia,” Sandy meant there was a 90 percent chance she not good. After high-dose chemotherapy for groceries, Sierra tentatively put her ing a “Miracles Happen” T-shirt. she turned white,” Sandy recalls, “and her said. Moments later, the family learned would never have cancer again,” Sandy reduced the mass to the size of a tennis last bill in the crane machine. With a firm It was the first sign that perhaps tummy started getting bigger.” that Sierra had cancer. “I had to leave the says, “and they told us they got the ball, surgeons removed it. grip on the handle, she slowly lowered the Sierra could beat the odds in a game that Sierra’s pediatrician concluded that room,” Sandy says. “I couldn’t breathe.” whole thing.” “They said they got the whole metal jaws to clench a prize from the stack really mattered, where the stakes were life she had asthma and prescribed daily Sierra was found to have Wilms Sierra won her personal version of thing,” Sandy recalls. “We followed up of stuffed animals filling the glass box. and death. breathing treatments. After numerous tumor, also known as nephroblastoma. Survivor and a wish to go to Walt Disney the surgery with a double stem cell trans-

 Promise / Summer 2006 Summer 2006 / Promise  plant and radiation, and I was thinking, us any hope,” Sandy says. “When the ‘Okay, this time we beat it.’” doctor asked where we would go, I said, After enduring a recurrence of cancer, ‘Anywhere—anywhere that gives A Hole-in-One By Tiffany Strange five bowel obstructions and her third us hope.’” major surgery, Sierra won round two of Sierra’s pediatrician conducted a will become the tournament’s title spon- a deadly competition and a wish for a frantic search and discovered that St. Jude sor in 2007. dog —a black Labrador retriever named Children’s Research Hospital had just For more than four decades, the FedEx St. Jude Classic has grown Phil Cannon has been affiliated Survivor. Why Survivor? “Because that’s begun a trial for Wilms tumor patients with the golf tournament since 1968. what I am!” Sierra proclaims. using the drug topotecan. and evolved, raising more than $16.5 million for the hospital. As its current director, he has a special “It was a godsend that they were affinity for St. Jude. “I’ve watched the running the trial at the same time for the tournament grow and evolve, but the one Topotecan same type of cancer that Sierra had,” names. In 1977, ex-President Gerald constant has always been St. Jude and its Only eight months after Sierra Sandy says, reliving the joy of that dis- Ford hit a hole-in-one during the tour- remarkable work saving the lives of inno- completed radiation, doctors instructed covery. “It was another sign.” nament’s Celebrity Pro-Am; pro golfer cent children,” he says. the Josephsen family to make funeral Laboratory studies directed by Jeffrey Al Geiberger also shot a record 59 (13- “I don’t have any children of my arrangements. The girl’s cancer had Dome, MD, of Hematology-Oncology “I can never say how thankful I am to Dr. under-par) round, which has since been own, so in many ways, I consider the returned for a third time. “You know it’s and Peter Houghton, PhD, of Molecular Dome, the PK [pharmacokinetic] nurses and BIOMEDICAL COMMUNICATIONS equaled but never broken in PGA play. children of St. Jude to be my sons and bad when the oncologist is crying with Pharmacology showed that topotecan everyone who has helped us on our journey In 1985, the event was renamed daughters. Even after 38 years, I still get you,” Sandy says. was an effective drug in the treatment of here,” Sandy Josephsen says. “How do you the St. Jude Memphis Classic. A year very emotional when I just sit and focus Wilms tumor, which has an 85 per- Wilms tumor. “We also had encouraging repay a hospital for saving your child’s life?” later, Federal Express became the title on the kids, the doctors and the hope that cent survival rate, proved a wily adversary data from patients treated on Phase I stud- sponsor. Of the more than $16.5 mil- the hospital provides to thousands for Sierra, but she was about to enlist a ies of topotecan, conducted at St. Jude,” time survivor of Wilms tumor is extreme- lion that has been raised for St. Jude of parents.” powerful ally. Dome says. “The combination of the labo- ly rare because survival rates diminish or more than 40 years, golf fans since 1970, $15.2 million (92 percent) With caring people like Cannon and “I told the oncologist, ‘We can’t ratory data and early clinical data turned with each recurrence,” Dome says. “The have been able to combine their has come since FedEx became involved. other tournament staff and volunteers, stay here any more; you’re not giving on the light bulb to start a clinical trial further out she gets, the better off she is.” love for the sport with support To increase fund-raising, the FedEx the FedEx St. Jude Classic will continue of topotecan specifically for patients “She knows exactly what it means Ffor the mission of St. Jude Children’s St. Jude Classic staff created an inter- being one of the most successful annual with Wilms tumor.” to never give up,” says Lisa Walters, RN, Research Hospital. The FedEx St. Jude active challenge for tournament fans. events benefiting the hospital. Once team members determine one of the pharmacokinetic nurses who Classic is one of the oldest continuously “Birdies for St. Jude” is a contest where To learn more about the medication’s most effective cared for Sierra. “She will undoubtedly operated stops on the PGA TOUR, thanks fans guess the number of birdies that the tournament, visit administration schedule, they adjust continue to be an inspiration to others, to to the dedication of volunteers and staff will be made during the tournament and www.hushyall.com. l or individualize the topotecan dosage give them hope.” who recognize the tournament’s impor- pledge an amount per as part of a treatment regimen called Sierra, who says she gets her strength tance to the hospital. birdie. The person pharmacokinetic targeting. “It’s beau- from her sister, Savana, had beat down The relationship began in 1960 when who comes closest to tiful in a way because we measure the her fierce competitor for the third time. the Memphis Open presented entertainer the actual number of topotecan levels in the blood, and it’s So what could she possibly wish for after Danny Thomas with a check for $600 to birdies wins a 2006 variable from person to person; so if that? “Another dog,” Sandy says with help establish a children’s hospital. At Buick Lucerne. the dose is too low we increase it and a roll of her eyes. “She wanted another that time, the tournament supported sev- After 21 years vice versa,” Dome explains. “There black Lab, and she wanted to name him eral children’s charities. From that initial as title sponsor, FedEx are very few chemotherapy drugs Topotecan.” Why Topotecan? “Because donation, support for St. Jude began to will step down after this where we can do that, so it’s a tremen- Topotecan saved my life,” Sierra says blossom. year. The company will dous benefit.” matter-of-factly. Thomas agreed to lend his name to continue its involvement Dome says the promising results Sierra received the dog she calls the tournament and became its honor- by becoming a present- of this study, unique to St. Jude, have “Topo,” and her family received another ary chairman. The first Danny Thomas ing sponsor and provid- prompted the Children’s Oncology sign that miracles happen. Memphis Classic occurred in 1970 with ing staffing through its Group and the International Society of “Some people say, ‘Three strikes, St. Jude becoming the event’s sole ben- employee volunteer Sierra named one of her dogs Topotecan, after Pediatric Oncology to consider a you’re out,’ but not at St. Jude,” Sandy eficiary. program. Stanford the drug used to eradicate her tumor. She gave a proposal using topotecan as the says. “Three times is a charm.” The event grew into one of the PGA Financial Group photo of the canine to Clinton Stewart, PharmD, standard chemotherapy for recurrent Perhaps that’s why Sierra is wishing TOUR’s most prestigious events, host- of Pharmaceutical Sciences, who contributed Wilms tumor. for a third black Labrador these days. ing some of the nation’s most impressive to the Wilms tumor protocol. “When people She’s even picked out the name—Hope. tour my lab, I tell them how much things cost,” Because, as the young cancer survivor Stewart says. “One instrument is $80,000; one Hope explains, “You’ve got to have hope.” l is $400,000. But then I tell visitors, ‘This is what As a result of this treatment, 8- makes it all worthwhile; this is priceless’—and I year-old Sierra has been cancer free pull out a picture of Topotecan.” JERE PAROBEK for nearly two years. “Being a three-

 Promise / Summer 2006 Summer 2006 / Promise  SETH DIXON SETH

ny seasoned soldier knows So how do scientists identify the “You can have a very good target the tactical value of having right patients? One option is to sequence but a terrible drug that never gets to the A the right ammunition and a the whole genome to look for mutations. target to do its job,” Gilbertson says. well-defined target. At St. Jude Children’s The process is costly, laborious and time “Or you can have a great drug that gets Research Hospital, researchers and clini- consuming. Sequencing just one gene can to the target and does its job, but the cians are wielding a formidable weapon take a week to complete. But Gilbertson target’s not important to the disease so called molecular-targeted therapy. This and his colleagues have discovered the kid doesn’t respond.” Many clinical assault on pediatric cancer requires that a quicker and less expensive way to trials now take both of these issues into they pinpoint specific targets, acquire the identify children with specific targets. account. best ammunition and take aim to ensure Using technology available in St. Jude’s To accelerate progress in this area, direct hits. Hartwell Center for Bioinformatics and St. Jude has created the Molecular One scientist on the front line of this Biotechnology, the researchers generated Clinical Trials Core, a central reference war is Richard Gilbertson, MD, PhD, of gene expression profiles of medulloblas- laboratory that helps scientists plan and St. Jude Developmental Neurobiology toma tumor samples. execute clinical trials of molecular-tar- and Hematology-Oncology. As he con- Gene expression profiling is a geted therapies. The facility provides its templates his battle plan, Gilbertson fre- method of determining which genes are users with advice, support and molecular quently mentions how treatments active in certain cells. The St. Jude team analyses. “It’s actually a pretty innovative have changed since the “olden days,” used a technique that looks at the expres- venture,” says Gilbertson, the facility’s a scant 10 years ago, when clinicians sion of 18,000 genes at once in a tumor. director. used the same therapy to treat every child Based on these studies, the scientists The core is currently handling 10 suffering from a specific type of cancer. identified signatures related to the kinds molecular-targeted clinical trials encom- But as St. Jude scientists learn more of genes that were expressed. These passing several signaling pathways and about the human genome and specific signatures accurately predicted the pres- tumor types. Samples from St. Jude genetic mutations, they are finding new ence of mutations. The researchers also and across the United States are sent strategies to ambush the enemy—child- discovered five distinct medulloblastoma to the facility. Inga Warr and Radhika hood cancer. subgroups. Thiruvenkatam, senior research techni- “Now, if a kid walks in the door, we cians, process the material and perform can complete a single test that takes half the necessary assays. A recent clinical On target a day to do,” Gilbertson says. “We will trial performed in the facility clearly indi- When using molecular-targeted ther- be able to say, ‘You’ve got a mutation cated that the drug under study worked apy, researchers’ first task is to identify of this gene, and you should go into this well in a population of more than 200 the target and find patients who have it. clinical trial.’” patients. The findings clearly indicated Most anti-cancer drugs are designed “What we understood 10 years ago that the drug inhibited its target. to combat genetic mutations that make to be medulloblastoma or ependymoma “In the olden days, you would give a cells malignant. To qualify for a clinical are probably four or five different dis- drug to patients and just measure whether trial based on molecular-targeted therapy, eases that just happen to look the same the tumor shrank or not,” Gilbertson says. a patient cannot simply have the specific through the microscope. It’s understand- “The assumption was that if it shrank Tumor Wars disease under study; the child must also ing what those different subgroups are then the drug was good. That’s a no- have the specific genetic target. that matters.” brainer. But if the tumor didn’t shrink, “If you don’t have kids with that the only conclusion was that the drug target in your study, then there is a great hadn’t worked. But you really need to chance that they won’t respond to that Ammunition know whether the drug got there and did St. Jude researchers launch a counterattack drug,” Gilbertson says. “For instance, In the past, traditional chemotherapy its job. And unless you know that, you if you try a drug in patients and only a and radiation treatments were used to kill can’t fairly judge whether a drug is good few or none of them respond, then your dividing cells. But today researchers have or not.” on cancer using molecular-targeted therapy. conclusion used to be that the drug was other weapons in their arsenal, and new As they join forces and gain even rubbish; it didn’t work. But that’s not factors come into play. Not only does more information about molecular-tar- necessarily the case. Perhaps it didn’t the target have to be identified, but the geted therapy, St. Jude researchers and work because you didn’t put it into the ammunition—the drug—has to be the clinicians are determined to win the war By Elizabeth Jane Walker right patients.” right one for the job. against pediatric cancers. l

Summer 2006 / Promise  Unless you’ve been living in a cave entirety for the first time. St. Jude Bird’s-eye View of Flu for the past two years, you’ve heard about researchers shared the data with avian influenza, or “bird flu.” That’s the the world in hopes that a deadly nickname for a class of influenza viruses bird flu pandemic can be fought— In an effort to understand—and halt—avian spread by wild, migratory waterfowl. or even stopped before it starts. Scientists fear that one strain, H5N1, Why did the Hartwell Center influenza, St. Jude scientists sequence 250 could mutate into a form that could trans- tackle that project? “Simply mit easily between human beings. because there is very little infor- “Having the DNA sequence of the complete genome of several hundred viruses gives us a tremendous genomes and 2,800 individual genes. That possibility and the desperate mation about bird flu viruses, amount of knowledge about these viruses,” says Clayton Naeve, PhD (at right), director of St. Jude’s need for knowledge about these elu- and these viruses constitute the Hartwell Center for Bioinformatics and Biotechnology. sive bird viruses sparked an enormous source of all influenza viruses Influenza has likely been in existence as research project in the Hartwell Center for that are known to infect humans long as human beings have walked the Bioinformatics and Biotechnology at and animals on the planet,” says Clayton tion, viruses that share specific genes and The Hartwell Center is designed to Earth. Even the ancient Greeks described St. Jude Children’s Research Hospital. Naeve, PhD, the center’s director. He and new protein interactions. unlock the secrets and mysteries of killer its symptoms. Each year, some 20,000 Using sophisticated biotechnology instru- his staff plucked viruses from a collec- Naeve’s team also found themselves viruses, proteins, genes and genomes at to 30,000 Americans die from influenza, ments and a supercomputer, scientists tion gathered during a 30-year period by face-to-face with a suspected killer. the most basic level. Twenty years ago, B y B o n n i e K o u r v e l a s mostly the elderly and people with com- mapped out DNA sequences inside Robert Webster, PhD, a world-renowned “We found that one of the virus pro- the center contained only one piece of promised immune systems. The most hundreds of the viruses. Looking like avian influenza researcher who holds the teins has a feature that allows it to bind to equipment; now it has grown into a world- serious recorded influenza outbreak enormous colored barcodes from a gro- hospital’s Rose Marie Thomas Chair in other cell proteins in human cells, and it is class facility with seven laboratories and happened in 1918, when 20–100 million cery store label, the bits and pieces of Infectious Diseases. only characteristic of bird viruses. It is not a data center, which provides advanced people died worldwide. genetic information were laid out in their “It was important for us to get this found in human viruses,” Naeve explains. biotechnology and bioinformatics support information,” Naeve says. “Having the “These bird virus proteins bind to a large for St. Jude research. DNA sequence of the complete genome number of cellular proteins that human These laboratories produce informa-

DIXON SETH BY PHOTOS of several hundred viruses gives us a influenza viruses cannot, and we think tion about the most fundamental mol- ecules in cells. The detailed, microscopic pieces of information are key to under- i standing many organisms. For example, St. Jude scientists mapped out 70 million DNA sequence information is helping base pairs of raw sequence data. If your St. Jude researchers understand why one patient’s cancer responds to a particular home PC tried to crunch that much data, the drug while another patient’s does not, and what may work instead. This information machine would run nonstop, 24 hours a day, holds promise for St. Jude patients, avian seven days a week, for nearly nine years. influenza researchers, and scientists in general, and it is all due to the generosity of donations made to the hospital. tremendous amount of knowledge about that is one of the factors contributing Naeve and the Hartwell Center team these viruses—how they relate, how the to the current high death rate in Asia constantly look to the future. “In the old genes in those viruses can re-assort and and Europe. This is the first time days it took us a year and a half to collect evolve, and which genes are important in since the 1918 pandemic that this bird 7,000 bases of DNA sequence,” Naeve the transmission from birds to humans or virus protein has been introduced into recalls. “Today we can produce 150,000 humans to humans.” human cells.” bases in four hours. We are hoping to The amount of data the team gath- Like a hitchhiker who turns violent deploy next-generation technology that ered is astonishing. St. Jude scientists and murders the driver who picked him can generate 20 million base pairs in five- mapped out 70 million base pairs of raw up, the non-structural, or NS, protein in and-a-half hours.” sequence data—including 250 complete the avian virus has a component that, “What we have clearly demonstrated genomes. This process used so much com- when introduced into human cells, binds here in the Hartwell Center is that an puter power that if your home PC tried to specific cell proteins and forces them investment in technology pays off in to crunch the data, the machine would to do as it commands. This process most new knowledge, new discoveries,” he run nonstop, 24 hours a day, seven days a likely leads to the death of the infected concludes. “These are tools for discovery. week, for nearly nine years. cell. St. Jude researchers believe this may And the more tools you have—the better Researchers found what Webster calls explain why the death rate among people tools you have—the more you are going a gold mine of new information. They in Asia infected with H5N1 is nearly 50 to learn and the more progress you are discovered new virus families that they percent—horrifyingly high. going to make.”l didn’t know existed in the bird flu popula-

10 Promise / Summer 2006 Summer 2006 / Promise 11 PHOTOS BY SETH DIXON ong of the Soul

S By Elizabeth Jane Walker

The music that courses through a ways to weave Christian precepts and family coverage would cost nearly $1,000 mother’s soul is beautiful and terrible. enrichment activities into a challenging a month. “There was no way we could Quavering with a baby’s first cry, it rises academic curriculum. The Alston children afford that,” she says. Because of his to glorious crescendos, shimmers with flourished, their achievement tests indicat- deteriorating condition, Bobby retained passion, thrums with sorrow. Beverly ing progress well above grade level. But his insurance but was forced to drop the Alston has memorized every measure of Beverly’s chief consideration was not aca- expensive family coverage. To make this magnificent opus. And as she watches demic prowess. “Children can be A and ends meet, Beverly opened a sandwich her son’s strong hands dance across the B students but lack character,” she says. shop. “I like to cook, and I needed a job keyboard, she marvels at just how pre- “As my children grew, I saw something in that was flexible so that I could take my cious that melody is. them that touched my heart—it was their husband back and forth to the doctor,” she When 18-year-old John Alston plays love of people, their mannerisms, their explains. the piano, the room reverberates with concern, their attitudes.” For a while, the kinetic tempo of emotion, evoking sorrow and solace, When Bobby began to have problems Beverly’s life evolved into a cacophony of passion and peace, exultation and loss. breathing, a doctor told Beverly that her disjointed chords. “I am only one person, Listeners may be surprised that a per- husband was suffering from mini seizures. but I was taking care of my husband; I former so young is capable of displaying Then the muscle tremors began. After was taking care of my business. I was still such harmonic depth and maturity. But visiting several physicians, the family teaching John; I was doing my church Beverly knows that her son’s musical gift finally received the cruel news: Bobby work; I was still trying to take care of is a complex composition of pain and joy had amyotrophic lateral sclerosis, or Lou the house. That’s how stretched I was,” that transcends mere technical ability. Gehrig disease. A progressive condition Beverly says. affecting nerve cells in the brain and the Prelude spinal cord, the disorder paralyzes the Elegy and faith John Alston was still reeling from the loss of his dad to Lou Gehrig disease As dedicated parents, Beverly and muscles that control movement, speech, In the meantime, John occasion- when doctors discovered a football-sized Bobby Alston led busy, fulfilling lives. swallowing and breathing. Eventually the ally began to suffer from chest pain and tumor in his own chest. Like his father, A full-time firefighter, Bobby traveled day arrived when Bobby required assis- insomnia. “It would just come and go,” who was a gifted vocalist, John is a the region as an accomplished gospel tance to don his firefighter’s uniform. He he recalls. In April of 2005, Beverly made musician who amazes audiences with singer and served as associate pastor of a had no choice but to retire. a medical appointment for him. “You tell his skill and harmonic depth. Today, the local church. As she home schooled their Investigating health insurance costs, the doctor that I said to run chest X-rays,” talented pianist has his sights set on a kids, Beverly constantly sought creative Beverly was appalled to discover that she instructed. But the physician did not career in music. only son. I’m still in control; I’m still “I pray for John all the time,” then on top of all that he happens to have here.’ I said, ‘You’re right, Lord, this is Sandlund says. “He and his mom are this incredible gift of music. The sky’s the your son.’ A load was lifted. And truly always saying, ‘Thank you so much; limit for him. It’s gonna be really fun to God has gone far and beyond to take thank you for helping us.’ What they see where he tracks in life and what God care of us.” don’t realize is that if anyone is getting has in store for him.” something out of this, it’s what I get from Hymn of thanksgiving them. They’re much more of an encour- Music with heart At St. Jude, John endured eight agement to me than I am to them.” Seated at the keyboard in Target courses of intense, multi-agent chemo- House’s Amy Grant Music Room, John’s therapy. His mom says the care at St. Improvisation hands wander across the keys as he chats Jude extended far beyond mere medical After finishing treatment in April of with his family. The jaunty, rollicking treatment. 2006, John left what he calls his “St. Jude tunes of Scott Joplin morph into the “I have seen the money that people family” to return home, finish his senior poignant strains of “Through the Eyes donate to St. Jude put into action,” she year of high school and make plans to fur- of Love” and a dramatic theme from says. “When you come here, you’ve got ther develop his musical skills. “I started “Phantom of the Opera.” But John’s first this burden on you. Your heart is hurting playing the piano when I was about 5,” passion—like that of his father before and aching; you can’t think about home, he explains. “I would copy what my sister him—is gospel music. “I’ll play the end- you can’t think about anything other than played.” About four years ago, he began ing my mom likes,” he says, as he begins ‘My child is sick.’ And the people at studying music in earnest, and his reper- to perform “It Is Well with My Soul.”: St. Jude say, ‘Don’t you worry about any- toire expanded from gospel and popular When peace, like a river, thing. You’ve got a place to stay; we’re genres into the classical realm. Now his attendeth my way, going to feed you. You don’t have to think sights are set on Juilliard. “That’s where When sorrows like sea billows roll; about anything except supporting your I’d really like to go after graduation,” Whatever my lot, child.’ Unless a person has gone through says John, who is leaning toward a career Thou has taught me to say, that, you just can’t understand what a bur- in music education or performance. It is well, it is well with my soul. den it takes off. His caregivers at St. Jude are excited Beginning with a soft counterpoint, “I lost my husband, and we didn’t to see what the future holds. “John is tal- John slowly embellishes the melody, add- have any insurance,” she continues, “but ented almost beyond words,” says Gwen ing runs, glissandos, odd harmonies, new John, his mom and his sister Danielle pause for family time in front of Target House. Last year, St. Jude has not sent us one bill. Not Anthony, RN. “He plays the piano like rhythms. The hymn grows in intensity, Danielle left her teaching post in Florida and came home to help take care of her father; she one. And that in itself has just lightened a dream, he’s a good spokesperson, and culminating in a storm that engulfs his extended her stay when John found out he had cancer. “John’s family is extremely supportive,” says St. Jude nurse Gwen Anthony. “Everybody was fighting this disease, not just John by himself.” the load.” he’s modest.” mother in wave upon wave of sound. The Alston family felt a special bond “John’s a gifted guy, in terms of Buffeted by this musical tempest, Beverly to many staff members, but especially to personality and personal strengths and feels the depths of pain John has endured comply, insisting that the problem was A couple of days after his dad’s A biopsy revealed that a football- John’s physician, John Sandlund, MD, of how he interfaces with people and deals and contemplates the possibilities that acid reflux. For the next few months, John funeral, John said, “Mom, my chest is sized tumor was growing in John’s chest, St. Jude Hematology-Oncology. with difficulty,” Sandlund adds. “And lie ahead. She gazes at her only son… popped antacids while he helped care for still bothering me.” This time, Beverly obstructing his breathing and pressing on and smiles.l his father, who was tethered to an oxygen accompanied her son to the doctor. When his heart. The physician called tank and a feeding tube. an X-ray indicated something unusual, the St. Jude Children’s Research Hospital; One Sunday night in August of physician scheduled a CAT scan. After the next day, Beverly and her son were in 2005, Beverly realized that her time with that test, Beverly was driving through the Memphis. Bobby was growing short. She lay on the countryside when her cell phone rang. At St. Jude, the family learned that bed and wept, muffling her anguish with “John has a mass,” the doctor told John’s cancer was a mediastinal large blankets so that her husband would not her. “It’s pretty large. We’ll need to get B-cell lymphoma, a type of non-Hodgkin hear. As Beverly cried, she prayed. “First, a biopsy.” lymphoma. As clinicians prepared John John endured eight courses of intense, multi- Lord, please don’t let him suffer,” she Beverly sat in her car on the side of for his first medical procedure, Beverly agent chemotherapy. His mom says the care pleaded. “Second, Lord, don’t let him die the road and wept again, this time for her panicked. extended far beyond mere medical treatment. alone, because I love him and I want him son. Then, all of a sudden, she stopped. “When they put that oxygen mask on “I have seen the money that people donate to to know he was loved. I want to be there “All I could do was look up at heaven him, all I could see was my husband with St. Jude put into action,” she says. “When you come here, you’ve got this burden on you. Your when the angels come and get him.” Then and say, ‘God, you know what? You sure that oxygen,” she says. “All I could think heart is hurting and aching; you can’t think she concluded, “Lord, I thank you. He are good. Only you could have known that was, ‘Oh, God, I wish I had my husband about home, you can’t think about anything has given me 31 beautiful years, and I I could handle one trial at a time. If I had here to help me go through this.’” other than ‘My child is sick.’ And the people at thank you.” found out about John two weeks before Beverly fled to the hospital’s chapel St. Jude say, ‘Don’t you worry about anything. Three days later, Bobby died peace- my husband passed, I would have been a and prayed for strength. “I was saying, You’ve got a place to stay; we’re going to feed fully at home, his loving family gathered basket case. There’s no way I could have ‘Lord, this is my son; this is my only son.’ you. You don’t have to think about anything around him. taken care of both of them at once.’” And it was like God replied, ‘I gave my except supporting your child.’”

14 Promise / Summer 2006 Summer 2006 / Promise 15 A Moveable Feast Bridging Countries to Save Lives A loving pair of restaurateurs use their culinary prowess for St. Jude kids. One hundred transplants, many lives saved. Now, the International Outreach Program in Chile is working to increase this number exponentially. By Thad Caperton

athleen and Louis By Victoria Tilney McDonough Rezzonico’s dedication to SETH DIXON St. Jude Children’s Research hen Gaston K. Rivera, MD, ongoing success. Doctors there also achievements, encourage them to keep KHospital parallels the incredible recently looked into the smil- performed their first haploidentical up their extraordinary work and empha- devotion of St. Jude founder, Danny ing eyes of a little girl settled transplant, making Calvo McKenna, like size the program’s importance. While Thomas, to St. Jude Thaddeus—the Wpeacefully in a hospital bed in Santiago, St. Jude, one of only a handful of medi- there, Evans and other St. Jude faculty patron saint of hopeless causes. Chile, his thoughts traveled back 22 cal centers in the world that performs also shared the latest St. Jude treatment As a happy and loving couple, years and more than 5,000 miles. these complex transplants. Now, children and research advances. Evans is the the Rezzonicos longed to start their In 1984, in his who need bone marrow hospital’s first director to visit Chile’s own family. After years of setbacks office at St. Jude transplants and who IOP center. and disappointments, they were still Children’s Research do not have matched “Without St. Jude, we wouldn’t childless. Kathleen, desperately look- Hospital where he siblings or unrelated have this program,” says Julia Palma, ing for help, spotted a Catholic church now directs the Chile donors may undergo MD, director of Calvo McKenna’s Bone one day on her drive home from her Program for the transplants using paren- Marrow Transplant Unit. “It has been New York hospital job. Upon enter- International Outreach tal donations. six years, and now many children who ing, she immediately found a shrine Program (IOP), Rivera would have been turned away without to St. Jude Thaddeus. She prayed to wrote a protocol for the opportunity to live are doing well. the patron saint, asking for his help children with acute The first 100 We have transplanted 100 children with and guidance in starting a family. Just lymphoblastic leuke- “Celebrating the a good survival rate, 75 percent, and as Thomas’ prayers were answered, mia, which significantly 100th transplant in with a good quality of life, which is most the Rezzonicos were blessed with improved overall sur- Chile has been a dream important.” three beautiful children. And, just as “Children are our life. The more we can do to help St. Jude, the better,” says hospital vival. This protocol come true,” says Rivera. Thomas vowed to build a shrine to supporter Louis Rezzonico, shown here with his wife, Kathleen. is still used in several “It goes to show you honor St. Jude Thaddeus, Kathleen countries worldwide “Without St. Jude, we wouldn’t that a devoted group Bridging time and place promised her support and dedication and for the last six years have this program,” says Julia can perform anything it For Rivera, the program’s ongoing to the patron saint. Night in Italy featured a singing chef, helped fund research and treatment at has enjoyed success at Palma, MD (at right), director of commits itself to do.” success is personal. A native of Chile, To honor that promise, the flaming desserts, opera singers, an St. Jude. Luis Calvo McKenna Calvo McKenna’s Bone Marrow “This program he finds great satisfaction in serving as Rezzonicos began making annual American Airlines vacation and a visit “We are thrilled with the way Hospital in Chile. Transplant Unit. shows how great things a bridge between two worlds. “Through stock gifts to St. Jude Children’s from a St. Jude patient from Monroe, things have gone the last two years,” can come from a small our collaborative research and interna- Research Hospital. Through the Louisiana. Kathleen says. “If we can send a nice, investment of St. Jude know-how and tional studies and protocols, St. Jude and years they learned more about the The Night in Italy event was more fat check to St. Jude and let St. Jude’s Forward strides resources, when there are dedicated and Calvo McKenna can help the children hospital and decided they wanted successful than its predecessor and mission be known more in the com- In 1999, after several years of talented partners in the host country,” from so many countries and states—here to extend their generosity. Using has since become the model for their munity of San Diego, I think we’ve intense preparation, St. Jude launched says St. Jude Director and CEO William and there,” he says. the resources of their three Seaport annual fund-raising dinners. From the accomplished our goals.” one of its first international outreach Evans, PharmD. “We think that the pro- Rivera says he is proud that the Village, California, restaurants, con- success of the event grew the creation “It’s all we care about,” adds programs at Calvo McKenna. The col- gram in Chile will lead to similar pro- Chile program is becoming a model for nections with local distributors and of the San Diego Chapter of St. Jude, Louis. “Children are our life. The laborative effort focuses on bone marrow grams throughout South America, fulfill- other St. Jude partner countries. Medical vendors, and the help of a St. Jude a group of local, loyal and dedicated more we can do to help St. Jude, the transplantation and limb-salvage surgery ing Danny Thomas’ vision of advances staff from other countries in the region Gift Planning representative, the St. Jude supporters. better.” for children with the bone cancer osteo- at St. Jude curing thousands of children are training in the bone marrow trans- Rezzonicos created A Taste of Seaport The Rezzonicos recently marked To learn more about making a sarcoma. all over the world.” plant unit in Santiago. “But most impor- Village, a unique dining experience to the 10th anniversary of their annual stock gift to St. Jude or other This spring the St. Jude Chile Evans joined a St. Jude group tantly,” he says, “the Chile program has raise funds for St. Jude. dinner events with A Stroll Through planned giving opportunities, please Program celebrated its 100th bone who traveled to Chile in March to con- helped many, many children who would The first such event was a success Brussels. Every event has included call ALSAC Gift Planning at (800) marrow transplant and the program’s gratulate the international team on their literally have died without transplants.”l and inspired an even more adven- visits from St. Jude patients and fami- 395-1087 or e-mail giftplanning@ turous event the following year. A lies from across the country and has stjude.org. l

16 Promise / Summer 2006 Summer 2006 / Promise 17 SETH DIXON SETH

c at e r i n g t o Dietitians work side by side with Food Services staff to pur- SETH DIXON chase and prepare meals for inpatients. “We have a philosophy at St. Jude that our children should have what they need and what they want,” Williams says. “We try to look at the whole picture and what’s going to be best for Patients the patient. It’s good for a patient to eat, and it’s good for the family to see the child eat.” While dietitians work with patients on an as-needed basis, they are also an integral part of certain treatment plans. When Williams came to St. Jude, dietitians had more than 3,000 con- sults a year. The number has grown to more than 19,000 a year. Among those thousands of consults are many kids who have experienced how Clinical Nutrition staff members go above and beyond in the name of food. Patients have special needs because of religious beliefs, cultural practices, specific diets, comforts or cravings. Staff members make arrangements for patients who must keep Kosher, who are Muslim, who eat only raw foods (Rastafarian), who ask for a specific brand name (Spaghetti O’s® Ruth Williams, EdD (at left), Clinical Nutrition director, double-checks an order against a room service menu with Lisa Armstrong, diet technician II. or SpongeBob SquarePants Kraft Macaroni & Cheese) or who crave Mommy’s home cooking. “Once we made macaroni and cheese with a patient’s mother’s recipe,” Williams says. in the hospital can order from a special menu whenever they are If a child is not eating at all, dietitians ask about a favorite hungry. The year the program began, patient satisfaction with food—even if it means the child will consume only that food. hospital food service improved by 35 percent due to the adop- “I had a patient who had an artichoke bush at his home,” tion of room service. Calorie intake rose 27 percent and protein says Kathryn Alexander, a nutrition support specialist. “The intake increased by 17 percent. patient was not eating at all and asked for artichokes. I bought “They can order breakfast and then call down at 10 a.m. for By Carrie L. Strehlau some, took them to the kitchen and worked with the chef on how a snack and then eat lunch and then call down at 2 p.m. again,” to cook them. The patient ate artichokes every day.” Williams says. Williams has been at St. Jude since 1989 and has many Dietitians create menus based on patient needs, and Food stories about patient requests. Services staff help deliver the food. “One child really wanted an over-easy egg, which we do “We have a group in our department who take the room not serve,” Williams says. Because that kind of egg is not fully service orders, put the trays together and deliver them to the What’s your pleasure? Artichokes every day? No problem. Repeated calls to room service? Sure. cooked, it may harbor dangerous bacteria. “We found a type patients,” says Judy Galloway, Food Services director. “We of pasteurized egg that was frozen, and we flew it from New really place a lot of importance on getting the children what they At St. Jude, one dedicated team does whatever is necessary to ensure that children eat. York. Another family who was Jewish had to keep Kosher, but will eat and what they like.” their child did not, as is their custom if a person is sick. We got Importance is also placed on researching different cultures Kosher TV dinners for the parents so they could eat. No other and eating habits so that dietitians are prepared and knowledge- place would do that.” able about their patients. Patient Brayden Rydell craved a certain brand of ice cream “I’ve lived in different countries, so that helps me,” says bars. His mother, Brenda, remembers that her son was not Registered Dietitian Terezie Mosby. “I have lived in Chile, and TwoHospital words that have one commonly accepted foodmeaning: “not so tasty.”. eating at all. we have had patients from Chile. So when they say they don’t

A At most health care facilities, food may not be exactly five-star quality, N “He had bad mouth sores while in the ICU,” she says. “He like something, I know what they mean. A tomato here is not the

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nor delivered on demand. At St. Jude Children’s Research Hospital, A saw a commercial for ice cream bars and said, ‘I think I could same as a tomato there.”

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however, “hospital food” is a term that means made-to-order. R try one of those.’ He was eating them faster than they could As evidenced by the “Excellence in Clinical Nutrition E

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In a setting where young patients experience mouth sores and nau- D bring them.” Practice Team Award” given to them by the American Dietetics

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sea, loss of appetite and unusual allergies, one team specializes in cater- S Brayden says he ate one every day. Association in 2004, the hospital’s Clinical Nutrition staff strive ing to nutritional needs and wants. Dietitians in the Clinical Nutrition “It melted in my mouth, so I didn’t have to chew it,” he to meet their patients’ needs. department work closely with patients, families and the health care team says. “It was awesome to have a dietitian. Most of the time at “At St. Jude, it’s not your typical dietitian’s job where you to determine the best diet for patients receiving treatment. other hospitals you can’t get what you want. At St. Jude, they’ll tell people what they can’t eat,” says Amy Lynch, a nutrition “Our goal is to get patients to eat and to keep them as adequately When Brayden Rydell was desperately sick, St. Jude dietitians get it.” support specialist. “Here we’re asking kids, ‘Please eat.’” nourished as possible,” says Ruth Williams, EdD, Clinical Nutrition provided him with the only thing he craved: a specific brand of Research has shown that well-nourished children have a Williams smiles. director. “When children come to St. Jude, going through therapy alters ice cream bar. “It was awesome to have a dietitian,” he says. higher ability to withstand infection and tolerate therapy than “It’s our responsibility to feed them when they’re at the hos- their taste. It alters their appetite. We try to find food not only that they “Most of the time at other hospitals you can’t get what you children who are undernourished. In 1997, St. Jude created a pital,” she says. “And if it means doing something a little extra, can eat, but that they like.” want. At St. Jude, they’ll get it.” “room service” program. Like patrons in a hotel, patients staying then we’ll just have to do that.” l

18 Promise / Summer 2006 Summer 2006 / Promise 19 v PHOTOS BY ANN-MARGARET HEDGES BY ANN-MARGARET PHOTOS

Based on the input of the Teen Council—a committee of teenaged patients and siblings who wanted a say in the renovation of their special Teen Room—Target planned for a designer to work with the group to On create a refuge to match their vision. Once again, Target, generous beyond description, brought that design to fruition—complete with huge plasma TV, arcades and out-of-this- world seating. It’s all about hanging Target out, after all.

It’s much more than a long-term housing facility: It’s a home-away-from-home. Elephants, with their wizened skin and large sagacious eyes, represent family, long life, strength and playfulness. In many cultures, these pachyderms are symbols of luck. This elephant fountain captures the spirit of Target House, where families live, play and heal. A duplicate of the fountain, designed in copper verdigris by artist Michael Graves, stands inside the Target corporate headquarters in Minneapolis. By Victoria Tilney McDonough

n the last handful of years, Karri Morgan has there, together, their hands spread like delicate starfish against come to live in Target House—a learned that if you take the wheels off a Radioflyer the cool glass. living lab of love, support, com- just buildings wagon, it makes a fantastic sled. She has learned munity and hope. with founda- the difference between faith and bargaining and that Humble heroes When St. Jude was planning to tions, walls, “volunteer” is a weird word, its root definition not For families heading to St. Jude Children’s Research buy a hotel for long-term housing, windows, a roof. even touching all that it encapsulates. But the Target Hospital for the first time—their children’s diagnoses reverber- in stepped Target Stores, like a true These houses are House manager has also found that listening—and ating in their ears like terrifying shrieks—packing bags, closing hero. Since the company’s inception in places where kids learning—are the most essential skills of all. windows and locking the doors to home can be wrenching. 1962—the same year St. Jude opened its can ride their bikes in In a Target House living room one day, Morgan spotted a Home, after all, is where family is—where the hues of everyday doors—Target has given back 5 percent of its sales a blur of frenzied mirth, 4-year-old patient with her hands pressed against the glass of life eddy around in a swirl of children’s laughter, wagging dog to communities across the country. With 1,400 stores in where a mother can offer an aquarium. Morgan squatted down next to the girl, becoming tails and familiar voices. Home is where that lovely, soft feeling almost all 50 states, that’s currently more than $2 million a a Kleenex to another mother small,I too, and started telling her about the striped fish, the puff- of safety exists. No one expects to find home at a pediatric hos- week. Target offered to build a house for St. Jude, allowing the who may have had a bad day, where cheeked one, the baby fish wiggling happily behind the mommy pital for children with catastrophic diseases. hospital to focus more of its resources on research and care. a teenager can forget the pain and fear of his disease by jumping fish. The girl had recently lost both her eyes from retinoblas- Until 1999, many of the families whose children were What was originally one large donation to build a house into a vicious game of Uno®. toma, a rare eye cancer. Without saying anything, the patient in long-term treatment at St. Jude stayed in hotel rooms, an grew into a friendship and an ongoing emotional investment. took Morgan’s hands and pressed them against the glass. Then, enormous annual cost for the hospital since some treatment can Wrapping its collective arms around the project, Target built Carnivals and care she politely closed Morgan’s eyes for her. Without a word, this extend as long as three years. But with the emphatic nod of one St. Jude two houses—98 suites, each with a living room, two Like the Energizer Bunny™, Target keeps on giving—not little girl showed Morgan what it felt like to be her. They stood generous and socially enlightened corporation, families have bedrooms, bathroom, kitchen and dining area. But these are not just material and monetary gifts but, more importantly, support,

20 Promise / Summer 2006 Summer 2006 / Promise 21 strength and playfulness. In many cultures, these pachyderms newly renovated Teen Room to watch the plasma TV or play are symbols of luck. This elephant fountain captures the spirit of video games. One patient and her sister might run downstairs Target House, where families live, play and heal. after dinner with their family, still in their slippers, and flop “It’s an honor for Target to be a partner with St. Jude in its down on the soft chairs in the house’s living room just to see never-ending quest to find a cure for every child,” says Laysha which friends might be around. Ward, vice president of Community Relations at Target. “And “I am at a loss for words,” says Beth Schellhorn, mother of while we are often credited for bringing happiness to St. Jude 2-year-old Grant, diagnosed with a brain tumor. “I wish St. Jude patients and families at Target House, it is their amazing stories of and Target knew what it means—really means—to have a house courage and perseverence which inspire us each and every day.” like this, to have all this help and support, during a time like this.”

A perfect balance The beauty of strangers In addition to all the Target events, families are also treated The walls of Morgan’s office look as if they are covered to countless volunteer events. People seem to come out of the with colorful shingles. Taped and pinned on every conceiv- woodwork when it comes to brightening the lives of St. Jude able inch are hundreds of photographs, drawings and notes to patients and families. Volunteers host several dinners a week, Morgan, the “House Mom.” She and her staff know most every- pool tournaments, Bingo nights, arts-and-crafts projects and thing that is going on in the house—from what event is coming some sweet events, too, like cookie-decorating. They even up to which kid tends to leave his favorite bike blocking the door arrange for weekly visits from a swanky local hair salon. between the two houses. Morgan enjoys the personalities and Volunteers help make idiosyncracies of the mem- the house tick—from bers of her huge family, showing foreign families and the stories she hears how to use the laundry or witnesses. The quiet machines to taking time moments among “family” to color with a little child. members are what make “When you leave her, too, call Target House home with a sick child, home. you are terrified. You are “I think the United stripped from everything Nations would learn a Kids are kids, it’s as simple as that. On days when the air is warm and the mood high, kids of all sizes and abilities swarm outside to ride around the you know—home, family, lot from us,” she says. grounds between the two houses. “They’re my own little Hell’s Angels,” smiles Karri Morgan. She enjoys going out to watch and to cheer them on, friends, everything that “Working here is hum- waving at the excited tangle of joy riding by. means ‘normal,’” says bling. Rarely does a day Bridgett Hart, mother go by that I don’t stop and of 13-month-old Clay, look around and marvel love, enthusiasm. “Target has been so generous and so loving and Target even plans special events for parents like Spa Day on diagnosed with acute at the kindess people are so giving, it takes your breath away,” says Morgan. “Their spirit Mother’s Day and a Redbirds baseball game outing on Father’s lymphoblastic leukemia. capable of.” of giving is amazing, and I don’t mean that just in their philan- Day. “So being able to do your Morgan remembers thropic efforts. Not only do they give more than $2 million away “Target will phone me and say, ‘How is everyone? Is there family stuff—cook dinner When Target House Manager Karri Morgan asked a patient leaving Target House two little girls who every each week, but they are so emotionally invested, and part of that anything you need?’” explains Morgan. One recent mention of in your own kitchen, read for home what he would most miss, he said, “I am going to miss my friends here day slipped get-well is because they keep their employees involved.” some of the apartment sofas looking a little worn after seven bedtime stories to your because no one knows me at home. And the doctors because they saved my life.” notes in Spanish under Four times a year, Target hosts a theme-based carnival at years of use resulted in the arrival, within days, of truckloads of baby in his own room—is She says, “So here’s the perfect world, illustrated by an 8-year-old boy, a world that the door of a tiny foreign represents the beautiful research and medical care taking place at St. Jude and the St. Jude for patients and families. That might mean a Halloween brand-new, designer sofas. priceless. And when you baby born with cancer. emotional needs of the families that are being taken care of at Target House.” dance, a Valentine’s Day dinner or a visit from actress Julie Domiciliary Social Worker Paula McCarthy mentioned to do need a community, it’s “I caught them one day Andrews or Olympic skateboarder Shaun White. One recent someone from Target that she was starting a teen scrapbooking there. Here, when a mom running back across the Target Carnival evening featured a professional dance teacher. class. “By week’s end, pallet upon pallet of every art supply you says ‘I know what you’re hall to their apartment. I “Everyone was dancing—moms, dads, kids, kids in wheelchairs. could imagine arrived,” she says. “There are no words for the going through,’ she does. found out that they made It was a wonderful, crazy free-for-all,” says Morgan. “We generosity of Target and its vendors, and their excitement about It will be hard to leave Target House and St. Jude.” these daily cards for ‘their baby,’” she says. “I think it’s that kind couldn’t stop talking about it for days.” making the lives of these kids and their families fun and as nor- Target House seems to have found the perfect balance of beauty, the beauty of strangers, that makes this house throb Each evening event is followed the next day by a full- mal as possible. The impact of this house is phenomenal. Every between offering families the privacy and normalcy they need as like an enormous heart. And the knowledge that we are all in fledged carnival packed with activities for all ages—from froggie day, we hear it, we see it and get to be a part of it.” family units and the community of others who truly understand it together.” Years after that little baby boy sadly lost his fight, tosses and hole-in-one golf games to photo opps with costumed what they are experiencing. To replenish his spirit, a patient those two girls continue to keep in touch with the family through characters. Target team members compete to come to Memphis The power of pachyderms might spend some time practicing the piano in the Amy Grant cards and letters. l and host the Target Carnivals. No one, it seems, wants to miss Inside the Target corporate headquarters in Minneapolis, Music Room. Another child might escape in a book in the Tiger the chance to be a part of the Target House world. Minnesota, stands a duplicate of the elephant fountain originally Woods Library. A father might sweat off his sadness in the Then there are catered dinners. Easter baskets, Christmas built to welcome families, staff and visitors to Target House workout room. Two friends might watch the night sky unfurl in presents, birthday cards…endless festivities and gestures of care. in Midtown Memphis. Elephants represent family, long life, the Sergei Grinkov Garden. A group of teens might retreat to the

22 Promise / Summer 2006 Summer 2006 / Promise 23 Perspective

The Gift of Giving By Scott Hamilton “A gift inspires another gift, and a miracle inspires the next miracle. pated in might have created the miracle It’s got to start somewhere; it might as well start with you.” that would save his life. You may never know the people whose lives you’ll touch when you help fund medical research. We all have an opportunity to really roll up our sleeves and get BIOMEDICAL COMMUNICATIONS involved in something that is much more important than ourselves. The greatest gifts ever given are those to whom the recipients will never know their origin. Danny Thomas said, “There are givers and tak- ers in the world. The takers eat better, but the givers sleep better.” Knowing that you can give of yourself for something that will go beyond your time on this Scott Hamilton pauses with patient Gabriela Salinas and her twin brother, Alejandro, at a Target planet is truly an extraordi- House event. (See story about Target House on page 20.) nary gift and something that will allow you—as Danny would say—to sleep better. St. Jude is built on the highest levels It’s funny how every event in your opportunity to become involved with of giving. Whether it’s a dollar or 5 or 20 life leads you to the next thing. When I St. Jude Children’s Research Hospital or 100 or a million—whatever you can was a kid, I had a mysterious illness that and Target House, it just seemed like a do to participate is bricks and mortar, it’s caused me to stop growing. Without that natural fit. Everything I had experienced— medicine, it’s time, it’s nursing, it’s doc- childhood illness, I’d probably be much as a child and as an adult undergoing tors. Everything that you can do makes a taller than I am today; I might have had cancer and chemotherapy and surger- difference. much more physical development and ies—had led me to this place. I felt like I A gift inspires another gift, and might not have ended up being a skater. could understand what the kids were going a miracle inspires the next miracle. If I hadn’t been skating, obviously my life through and I could truly be empathetic It’s got to start somewhere; it might as would’ve been a lot different. So every to their issues. well start with you.l event puts you where the next event can My wife, Tracie, and I have a 2½- shape the next aspect of your life. Then year-old son named Aidan. Suddenly the Olympic gold medalist Scott Hamilton several years ago, I had testicular cancer, stakes have gotten even greater for me to is a longtime supporter of St. Jude and followed by a bout with a non-cancerous find new research dollars and help create Target House. A cancer survivor himself, brain tumor. awareness of St. Jude and Target House. the figure skating icon also has an active I lost my mother to cancer, and so the The more I can do, the better I hedge my career as an actor, producer, author, importance of cancer research was infused bets to make sure that if Aidan were ever sports analyst, motivational speaker and in me at a very early age. When I had an to have an issue, that something I partici- philanthropist.

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