2013 telethon tlc

TELETHON

2013

ALL CHILDREN’S HOSPITAL

Tender Loving Care

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All Children’s Hospital Foundation qualifies under Section 501(c)(3) of the IRS Code. Our federal tax iden-tification number is 59-2481738. Our Florida Solicitation of Contri-butions Act Registration Number is SC-01106. A copy of the official registration and financial infor-mation may be obtained from the Division of Consumer Services by calling toll free 1-800-435-7352, within the state. Registration does not imply endorsement, approval, or recommendation by the state. We retain no professional solici-tors and our Foundation receives 100% of each contribution.

COVER:Samantha has come a long way in her seven years. A happy, active kid with a love of softball, Sami shows no signs of the blood clot that almost killed her as a newborn. All Children’s specialized program to deal with clotting issues in children has come a long way, too— now under the direction of a recognized international leader in the treatment of thrombosis in children. Learn more on page 20.

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2 Telethon Turns 30It’s a milestone year for the All Children’s Hospital Telethon, with reflection on how far we’ve come and a look ahead at expanding opportunities to improve children’s health care.

4 OliverThis little guy prepares for his future career as a “bone doctor” by placing casts on a stuffed Elmo. Read about a rare disorder called osteogenesis imperfecta (OI) and the help Oliver receives from All Children’s.

8 WillieBack in the warm embrace of people who’d helped him battle for his life in 1996, Willie Marshall felt like he was back home—his “second home,” All Children’s Hospital. But a lot has changed in the effort to help others with his same cancer diagnosis.

12 The Other House That Ruth BuiltAs a new baseball season and first-ever All Children’s sponsorship of the Tampa Bay Rays begins, learn about a little known connection between the hospital and baseball’s legendary Babe Ruth.

16 Tree of LifeA four-foot artistic cutout of a tree in a Pediatric ICU conference room serves as a reminder of the Circle of Life. Its roots are based in one nurse’s personal experience at All Children‘s.

19 Helping Children & Families to Live WellAll Children’s new Palliative Care program provides coordinated services for kids with life-limiting or life-threatening illness or injury, thanks to a generous pledge from the All Children’s Hospital Guild.

20 From Saving Sami to A New Era of TreatmentThe picture of health at birth, 12 days later Sami was fighting for her life in All Children’s ICU. Learn about the surprising number of kids threatened by blood clots, and the expert team working to help them in our Pediatric Thrombosis program.

Contents TELETHON 2013

Tender Loving Careis published two times yearly by the Marketing & Public Relations Department for the staff and friends of All Children's Hospital. All rights reserved.Please address all correspondence to: All Children's Hospital FoundationP.O. Box 3142, St. Petersburg, Florida 33731

Editor: Ann Miller

Contributing Writers: Ann MillerEllen Arky, Dave Scheiber

Photos: Mike Sexton,Andy Merhaut

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Ask anyone who’s been there—turning 30 is a milestone, a cause for reflection on the journey thus far and an opportunity to map the road ahead to a brighter future.

T he 2013 All Children’s Hospital Telethon on Sunday, June 2nd marks the 30th time

we’ve taken to the airwaves to raise funds and friends for the region’s preeminent children’s hospital.

A lot has changed over the years. Early Telethon stars who made their television debut as infants are now grown, some with children of their own. And our St. Petersburg campus is now home to state-of-the art pa-tient care spaces that Telethon dollars helped to build.

Some things—like the clinical exper-tise and tender loving care that we’re known for—thankfully will remain the same.

The road ahead holds opportunities to build upon these strengths. Our integration with Johns Hopkins Medicine in Baltimore is already

generating collaborative research efforts. Innovative training of tomor-row’s physicians in the All Children’s Hospital Johns Hopkins Medicine pediatric residency program begins in 2014. One can only imagine the impact this will have on the children who’ll be counting on our care in the future. Making it a reality relies on continued support from Telethon viewers like you.

On Telethon Sunday June 2nd, our WFLA News Channel 8 hosts will bring you the stories of some amaz-ing kids live from All Children’s Education and Conference Center. And our TV partner to the south—WXCW/CW-6 in Ft. Myers—will bring stories of All Children’s expert care “closer to home” for our viewers and patient families in southwest Florida.

One new twist this year will give WFLA viewers a “sneak peek” of the Telethon on Saturday June 1st from 7- 7:30 PM. Tune in to learn more about the hospital’s history and to see some familiar faces—past Telethon stars and former Channel 8 hosts who will be returning for this year’s broadcast.

All Children’s Hospital was among the first children’s hospitals to join Children’s Miracle Network Hospi-tals (CMNH). This unique network partners TV stations with their local children’s hospitals, and then provides them with entertainment segments featuring nationally known

talent to help create Telethons with a truly inspired difference. The money raised on each local Telethon stays at that area’s local children’s hospital.

But the best reason to tune in on June 2nd—and one thing that will never change about our Telethon—is the stars of our show, the incredible kids who benefit from All Children’s care. Read about some of them in the fol-lowing pages.

Your donations have made All Children’s what it is today—Florida’s referral center for the best in pediatric care, and the first U.S. hos-pital beyond the Baltimore/Washing-ton, D.C. area to attain membership in Johns Hopkins Medicine.

Most importantly—your Telethon donations stay right here, helping All Children’s Hospital to reach its potential in partnership with Hop-kins. With your help, we’ll realize the goal of becoming one of the top academic pediatric medical centers in the nation—if not the world.

And we’ll always be YOUR children’s hospital, celebrating the miraculous kids we serve right here on Florida’s west coast.

ALL CHILDREN’S HOSPITAL2

Telethon Turns 30

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All Children’s Hospital

2013TelethonJune2ndCelebrating30 Yearsof Miracles

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Three-and-a-half year old Oliver already knows what he wants to be when he grows up. Not a policeman or firefighter. He wants to be a

“bone doctor.”

He already knows how to put a cast on a leg. “At our house, Elmo gets them all

the time,” mom Kelly says with a wistful smile.

That’s probably because Oliver has had more than his share of casts. His parents estimate Oliver has already had over twenty fractures of his legs—but honestly, they’ve stopped counting.

Oliver was born with OI—osteo-genesis imperfecta—otherwise known as brittle bone disease. Without hard numbers, the Na-tional Institutes of Health can only estimate that between 20- and 50-thousand Americans have this rare genetic disorder. Oliver’s or-thopedic doctors at All Children’s suspected OI before Oliver turned a year old. Delivered breech, Oliver was treated as an infant for a leg fracture by pediatric orthopedist Greg Hahn, MD. By the time he’d turned two, and had three

fractures, Dr. Hahn referred the family to genetics for OI testing.

Five days after the tests confirmed OI, Oliver broke his leg again. Just climbing out of his car seat the wrong way can result in another fracture.

“So far, legs are the only thing Oliver ever breaks,” Kelly explains,

noting that other OI kids they’ve met will suffer broken bones throughout their bodies. “I just think back before we knew the di-agnosis to all the times he’d be on the changing table, crying. We’d lift him by the feet to clean his bottom, never knowing he prob-ably had fractures even back then.”

Though there is no cure for OI, treatment aims to prevent or control symptoms while optimiz-ing bone density and growth. Oliver regularly spends the day in All Children’s Infusion Center, receiving intravenous medication under the direction of pediatric nephrologist Sharon Perlman, MD. The drug aims to maximize bone density.

oLiver


His parents estimate Oliver has already had over twenty fractures of his legs—but honestly, they’ve stopped counting. Continued—

Wet Work — Oliver and pediatric occupational therapist Lee Ann Tripepi work in Clearwater’s Long Center pool. Mom says Oliver’s progress toward therapy goals usually starts in the water.

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OLIVER

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Oliver has also been through a pro-cess called “rodding.” Pediatric or-thopedic surgeon Scott Beck, MD operates to place thin metal de-vices called Fassier-Duval rods into the long bones of the legs. These

telescoping rods run the length of the bone, “growing” in length as the child’s bone grows. It’s thought that the rods offer greater strength and stability, keeping the child’s bones from curving due to

repeated fractures as they grow. In January, Oliver had surgery at All Children’s to place the last of four rods in his legs.

But that didn’t sideline Oliver for long. Twice a week, he works with physical therapist Marijcke van der Merwe at All Children’s Outpatient Care, East Lake. And two afternoons each week, you’ll find him in one of his favorite places—the pool at Clearwater’s Long Center. Here, pediatric occu-pational therapist Lee Ann Tripepi and pediatric physical therapist Allyson Murphy can put Oliver through the paces, safely buoyed by the water against potential fractures. It’s in the water, mom says, where Oliver usually makes the fastest progress.

No wonder, then, that Oliver’s family treks from their Palm Harbor home to All Children’s whenever he takes a serious tumble.

“I feel like we’re blessed to have All Children’s Hospital as close as it is,” says mom, “lucky that the people here are open to discussing Oliver’s care with experts nation-wide who deal with OI. No one has all the answers when it comes to OI, but the people here at All Children’s are interested in learn-ing and willing to search for those answers.”

—Ann Miller


“I feel like we’re blessed to have All Children’s Hospital as close as it is.”

Ready for Anything—Oliver and his buddy The Hulk hide out in their blanket tent waiting for another operation at All Children’s Hospital in January. This procedure would place a rod in Oliver’s leg to strengthen and straighten it.

Inner Strength—Pediatric orthopedic surgeon Scott Beck, MD places the last of four rods in Oliver’s legs (visible on the monitor) to help straighten and strengthen them against OI.

Oliver, continued

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OLIVERTough Little Guy—Oliver loves The Hulk, right down to the pajamas that give him super-strength on surgery day.

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It was a different time, a different place. And after all these years, he was—in some ways—a different person.

But standing in the warm embrace of people who’d helped him battle for his life, Willie Marshall felt like he was back home—at his “second home,” All Children’s Hospital.

“Instantly, it took me back to being 16 years old,” Willie reminisced. “It’s all positive

thoughts and memories. This place is different—nothing like it was back then. But you see familiar faces and

it lets you know that these people are passionate about their job. They love what they do.”

Back in 1995, Willie was a high school football star who broke his leg on an Immokalee playing field.

After months without healing, Willie was sent to All Children’s Hospital in St. Petersburg. His leg had broken because of a cancerous tumor called osteosarcoma.

“I thought—OK, I’ll lose my leg. But not my life,” Willie said back then.

In the care of then-pedi-atric oncology director Jerry Barbosa, MD and a team of pediatric nurses and providers, Willie was enrolled in a national Children’s Oncology Group drug trial aimed at reducing the odds his cancer might reappear in his lungs. Through that grueling year, Willie lost more than twenty pounds but gained lifelong friends among the doctors, staff and fellow patients he met while being “a guinea pig,” as he liked to joke.

Eighteen years later, there’s still so much left to learn.

Small Numbers Make Lengthy Studies“Those big multi-institu-tional trials through the

Children’s Oncology Group are fan-tastic—they’re very important for an-swering the big questions,” explains All Children’s pediatric oncologist and researcher Damon Reed, MD.

WiLLie

“I thought—OK, I’ll lose my leg. But not my life,” Willie said back then.


Continued—

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Strong to the Hoop—Back in 1996, Willie’s photo was on the cover of Tender Loving Care. Even after amputation, Willie never lost his desire to be a winner in the game of life.

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WILLIE

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Special Guests—Willie brought his girlfriend Ronei on a recent visit to see the new All Children’s Hospital and meet the care team that helped to save his life.

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“Unfortunately, for osteosarcomas specifically, there’s not been a lot of success with the trials the last couple decades.”

Reed’s research, funded through a grant from the Pediatric Cancer Foundation, pulls together Tampa’s Moffitt Cancer Center, All Children’s Hospital and eight other pediatric hospitals around the country to match the safest, most effective and best tolerated medicines with pediatric cancers. His work focuses on the group of tumors called sarcomas—cancers of the muscles, bone and fat. Osteosarcoma—the type of tumor Willie had—is just one of more than 50 sarcomas. Overall, the occurrence of sarcomas is rare—about 1% of all cancers in the nation. They’re somewhat more common in children, accounting for 10-15% of all pediatric cancers.

Because these tumors are so rare, Reed explains, it can take years to identify and enlist enough patients for an effective drug trial. “Even working with countries throughout Europe and other parts of the world, it can take eight to ten years to answer these questions. It takes about 800 patients and about ten years to conduct just one of these studies. So for example, results of a 2003 trial will be coming out this year—and that’s just the preliminary results, not all the answers.

“The last few trials for osteosarcoma did not yield any big breakthroughs. We hope to learn a lot more about the disease. But there may have been some missed opportunities along the way.”

Preserving the CluesThere’s no shortage of drugs that are already known to have some impact on cancers, says Reed. Part of the problem is that not every cancer—every tumor—every osteosarcoma—develops the same way in different people. It may be a matter of match-ing the right drug or combination of drugs with the right patient. But how do you determine that match?

Reed and many other researchers believe the tumors ultimately hold all the clues. “There’s something in the DNA or the RNA or proteins that has taken it from its normal course. But without tumor specimens, we’re just guessing.”

That’s one reason why All Children’s is actively working to build a biore-pository for blood and tissue sam-ples, along with supportive programs in bioinformatics and proteomics to help researchers assemble data and tease clues from the samples. “It’s critical,” says Reed. While other

institutions nationwide are consider-ing similar initiatives, Reed says, “I think we could help lead this effort.”

As rare as these cancers are, imagine if we had been able to preserve specimens from Willie’s tumor and the hundreds of other young patients who’ve been diagnosed in the past twenty years. “We probably weren’t that savvy back in those days,” Reed reflects. “But if we had been able to store specimens in a way that’s efficient—with all the genetic codes for the osteosarcoma, the DNA—all the messages that signal the cancer to continue to grow, the RNA—and all the actual machinery of the cells, the proteins—if we would have had that, perhaps we could have unlocked a few more secrets along the way.”

Reed emphasizes—in order to make progress—the time to collect tumor specimens is now. “Even if the biorepository just stores blood and tissue specimens, we may well have new technologies in the near term that will be able to unlock some secrets. If we don’t start collecting and storing specimens now, then we’ll be in no position to better the odds for the next patient like Willie that comes along.”

A Long Way Here, A Long Way to GoUp on the seventh floor of the new All Children’s Hospital, now 34-year old Willie was getting a tour of the Vincent Lecavalier Pediatric Cancer and Blood Disorders Center from his former physicians, Drs. Jerry Barbosa and Nanette Grana.

“These rooms are humongous! And Room Service on the TV screen? That’s high tech!” Willie said with a smile. He should know


“If it wasn’t for your generosity, who knows what would have happened with my life? So I truly thank you for that. And for the folks that are thinking about giving, please give.”

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Willie, continued

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comfortable accommodations. Willie was vacationing from his job with Hilton Worldwide Hotels in Manila, Philippines. He comes home to Florida three or four times a year, but this was his first trip to All Children’s Hospital since it moved to its new site in January of 2010.

‘It’s different! I mean, nothing like before,” he recalled. “But it’s different in a way that shows how much All Children’s has grown. It shows the support All Children’s has from the community for the great things they do for kids.

“All Children’s will always be dear to my heart. It’s never left my heart,” Willie said with thanks for all those

who’ve contributed to making the hospital what it is today. “If it wasn’t for your generosity, who knows what would have happened with my life? So I truly thank you for that. And for the folks that are thinking about giving, please give.

“To this day, All Children’s is making it a lot easier for kids and their families—knowing that they can come to such a great place and the best efforts will be put into help-ing their children to get well. Yet we all know, the more research we have and the more we can change things, the better it will be for all of our children in the long run.”

—Ann Miller

“It shows the support All Children’s has from the community for the great things they do for kids. All Children’s will always be dear to my heart. It’s never left my heart”

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Willie and Friends—Willie with some of his co-workers at Hilton Worldwide Hotels in Manila, Philippines.

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12 ALL CHILDREN’S HOSPITAL

The Other House That Ruth BuiltThey called it the House That Ruth Built. The fabled nickname for old Yankee Stadium honored the baseball immortal who remains larger than life in American culture: the Sultan of Swat, Babe Ruth.

But there is another house the Babe helped to build. He did it not with his bat but with his heart, not with his towering home runs but with a soar-ing spirit of generosity toward children—espe-cially those in need.

You can find the modern incarnation of that house right here in St. Petersburg, where Ruth spent many a spring training with the franchise he forged into a dynasty, the New York Yankees.

And you might be surprised at its identity: All Children’s Hospital.

T he story of how Ruth lent a hand in cementing the foundation of All Children’s—then called the

American Legion Crippled Children’s Hospital—is worth knowing now for many reasons.

With another major league baseball season underway, what better time to recall a little-known chapter of local baseball history that helped a small St. Pe-tersburg hospital create a bold history of its own?

With a newly signed sponsorship relationship now linking the Rays and All Children’s, what better time to reflect on the man who first linked big-league baseball with the lives of young patients here?

And who better to tell us about the giving side of the Babe than the one

living person who knew him better than any other—his 96-year-old daughter, Julia Ruth Stevens?

Reached by phone at her part-time home in Phoenix, Julia spoke with a voice filled with vitality and en-

thusiasm as she talked about the baseball’s original home run king—a person she still calls “Daddy.”

“He was a wonderful, wonderful man,” she says. “I loved him—and to this day, I think about him all the time and I miss him. I think of how wonderful he was with children and

how much he loved them. I believe that was because of his upbringing and not having a family to be there for him.”

Unable to handle their rambunctious son, Ruth’s parents placed him in St. Mary’s Industrial School for Boys in Baltimore at only 7. He remained a ward of the strict reform school for much of his youth. Yet it was there that he developed a gift for baseball, starting on his pathway to mythic baseball stature—always reaching out to kids along the way as if to ease painful memories of his own childhood.

“One thing about Daddy: He never refused an autograph,” Julia adds.

Continued—

“Babe Ruth to Help Kiddies: Sultan of Swat to Aid In Making Crippled Children’s Hospital A Success,” proclaimed the headline.

Julia Ruth Stevens

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Babe Ruth and daughter Julia on a cruise ship during the barnstorming trip to Japan in 1934.Photo courtesy of baberuthcentral.com

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“After the game was over , there was always a bunch of kids waiting for him to sign their autograph books. He’d stop and do it, and he would have stood there forever—until mother would chime in and say, ‘Well, Dear, don’t forget we have guests coming for dinner so we’d better get home.’ ”

But the Babe did more than use his hand to sign his name for starry-eyed kids and just as many adults. He handed over a hefty amount of cash to help the fledgling American Legion hospital. A page of the St.

Petersburg Times from March 29, 1928 laid out the details—only six months after Ruth hit his record-breaking 60th home run as the cornerstone of the “Murderer’s Row” lineup and arguably the best baseball team ever assembled, the 1927 World Champion Yankees.

“Babe Ruth to Help Kiddies: Sultan of Swat to Aid In Making Crippled Children’s Hospital A Success,” proclaimed the headline.

The article de-scribed how Ruth, despite being a na-tional hero, never lost touch with a childhood that had its share of poverty and pain. “To show his sym-pathy for other children who are starting life out under a handi-cap,” the story said, “he made the first donation in the campaign now being staged here to raise funds for the continuance of the work at the Crippled Children’s hospital.”

Ruth’s cash donation to the Ameri-can Legion post involved with the hospital was called “liberal” in the account, which also included this quote from the Bambino himself:

“It’s fine during the baseball season to see the youngsters on the bleachers and in the grandstand on a Saturday afternoon and their applause is one of the greatest inspirations the ball players have. But the one thing that gets under the skin is the kiddies in the hospitals like those in your local institutions who can’t enjoy sports themselves and seldom get out to see a ball game.

“I really feel it more of a privilege than a duty to do what little I can to help keep up the good work that is being done here by the Legion and the citizens of St. Petersburg for the (crippled) and underprivileged children of Florida.”

Ruth also announced his intention to visit children in the hospital in hopes of lifting their spirits, something

he made part of his regular routine around the country—well before it became a common practice by other ballplayers of his generation. But his most public gesture on behalf of the future All Children’s Hospital was to participate in a 1932 charity golf showdown staged at the Pasadena Country Club in nearby Gulfport.

The match paired the two famous Babes of the era in a best-ball competition: Babe Ruth vs. female golf and overall sporting great Babe Didrikson (Zaharias). Onlookers in the gallery were reportedly abuzz at the sight of Ruth and Didrikson trying to outdrive one another, with the female Babe ultimately establishing her dominance on the fairway.

Julia has heard about the event but doesn’t recall any of the details. Still, she has vivid memories from her many visits from New York to St. Petersburg as a child. “I’d come down whenever the Yankees trained,” she says. “I remember the green benches on Central Avenue and the Don CeSar on the beach.”


The Other House That Ruth Built, continued

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“I think of how wonderful he was with children and how much he loved them. I believe that was because of his upbringing and not having a family to be there for him.”

“One thing about Daddy: He never refused an autograph.” Photo courtesy of baberuthcentral.com

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She was a little girl when Ruth married her mother, Claire, then legally adopted Julia. ”My own father died when I was very young,” she says, “so as far as I was concerned, Daddy was just Daddy—the only father I ever knew.” She recollects how her father always rented a home or apartment in St. Petersburg for himself and the family, which included half-sister Dorothy. One spot was the Rolyat Hotel in Gulfport (now located on the grounds of Stetson University College of Law). Another was the old Jungle Hotel, adjacent to the Jungle golf course that was a favorite spot of the Babe, who had a passion for the links.

“If it hadn’t been for golf, I don’t know what Daddy would have done after he could not get a manager job when he was released from the Yankees,” Julia says. “He wanted so much to manage a team. But (base-ball commissioner) Judge Landis said, ‘You can’t let that guy manage a team. He can’t even manage himself.’ Well, of course that was not true. By the time that Daddy was released from the Yankees, believe me, there was no wildness in him left. My mother tamed him down.”

Julia remains unwaveringly proud of her father and his mighty accomplishments, such as his 714 home run total that stood as the standard for many decades, and his achievements as a pitcher before being switched to outfield.

“He would have made the Hall of Fame just as well as a pitcher,” she says. “I hope nobody ever forgets what he accomplished and that his name will go down in history for those things—not, as one magazine wrote about him, that he was a woman-chaser and a drunkard and this and that. Believe me, he couldn’t have done what he did on

the baseball field if he had been what they called him.”

In fact, the Ruth family contends that the widely held view of the Babe as wild and reckless was exaggerated by the media at the time and later became entrenched in lore by Hollywood portrayals. That has led great-grandson Brent Stevens, 35, to create a website (http://www.baberuthcentral.com) dedicated to celebrating the Babe’s on-the-field

feats and many charitable endeavors away from the game. The site, which went live in 2006, is a treasure trove of all things Babe Ruth: photos, interviews, history, and recollections from Ruth descendants and baseball experts.

“The more I heard about my great-grandfather, the more I realized how special he was not just as a baseball player but as a person,” Stevens says.

That human side has been championed in St. Petersburg by the Committee to Commemorate Babe Ruth, run by Ruth experts Tim Reid and Bob Ward, who have several projects in the works to honor the legend locally. And it has been well chronicled by author and respected baseball historian Bill Jenkinson, who penned the book “The Year Babe Ruth Hit 104 Home Runs.”

“When you research Babe Ruth, which is something I’ve done for 34 years on almost a daily basis, this is something you see over and over again,” he says. “There’s no hyperbole. The man’s flaws and limitations I think are well-known, but I don’t think I’ve ever become aware of a more caring, decent, kind person than Babe Ruth.”

His nature was never more apparent than with children, including those in a little St. Petersburg hospital that would continue to grow and flourish—with a helping hand from one of the game’s all-time greats—into a burgeoning modern institution. Count it as one more home run on the Babe’s list.

Today, All Children’s affiliation with Johns Hopkins Medicine brings the Babe Ruth story full circle, entwining the city of his humble beginnings, Baltimore.

Told of what has become of the American Legion hospital her father aided, Julia paused at the thought and then spoke: “Oh, that’s wonder-ful. I’m so glad to hear it. Daddy would be very happy about that.”

After all, it’s the other House Ruth Helped Build. And somewhere inside All Children’s, the heart of the Great Bambino still beats strong.

—Dave Scheiber

“I really feel it more of a privilege than a duty to do what little I can to help keep up the good work that is being done here by the Legion and the citizens of St. Petersburg for the (crippled) and underprivileged children of Florida.”

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Tree of LifeThe tree went up quietly last December in a small, fifth-floor conference room at All Children’s Hospital.There were no blinking lights or festive decorations like the countless ones already decked out for the holidays around town and beyond, no fanfare or laughter. But the spirit of giving and love still filled the room in a powerful way, amid the silence and the tears.A handful of nurses from the Pediatric Intensive Care Unit (PICU) gathered in front of a beautifully crafted cutout of a tree—a swirling, storybook design with leaves blossoming and roots extending toward a simple message at the base:Organ Donation / from life to life

I t was a simple reminder of a harsh reality that nurses of the PICU face on any given day: that some

of the children whose lives they touch by pouring themselves into their round-the-clock care—children who touch their hearts in return—don’t heal or ever get to return home.

Yet at the same time, there was something uplifting and hopeful about this four-foot-high artistic addition by the front door, giving comfort to the intensive care nurses as they gazed at it.

The tree would be a new way to honor those young patients who, while having reached the end of their own lives, had helped enhance or make possible life for others.

In a warm, understated way, it would celebrate the memory of a child who had passed—and a child with a new chance at living—through the priceless gift of organ donation.

“For many of the nurses here, unfortunately part of their job is to go through this heartbreak of losing a patient,” said PICU director Melissa Macogay, sitting at the conference-room table a day after the tree arrived. “For many, this makes it worth it somehow. It gives it a bigger picture. This is why we do this, because in turn, somebody else may save a life. Sometimes, that’s the only good that comes out of some really horrific weeks.”

The idea for the tree began with PICU nurse Traci Gregory, a member of All Children’s Donation Advisory Council, who attended a LifeLink organ donation conference earlier in 2012. The conference utilized the

symbol of a tree and the theme of butterflies to signify organ donation.

One of the PICU donor families from All Children’s was in attendance and the father addressed the conference, explaining what a source of comfort it was to know his late daughter’s heart lived on in another child. He went on to explain how she loved butterflies, and how every time he sees one, he thinks of her and feels buoyed by her memory. Traci and her entire table were in tears as they listened.

She returned to All Children’s with a burning desire to introduce an organ donation symbol that would represent the lives lost but also sustained each year.

She envisioned a tree of life, with butterflies that could be attached to it—each one bearing the name of a child whose organs had been do-nated. At a crowded meeting of PICU nurses in their second-floor team room, Traci presented her idea excit-edly—driven by her passion for the topic and spurred by something deep inside. Everyone instantly loved it.

“It was the middle of a shift and all these ideas just kept growing,” she said.

Continued—

“It’s a good way to show that what we do doesn’t end here, that life goes on.”

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A Heartfelt Start—PICU nurse Traci Gregory, RN came up with the idea for the Tree, a concept born out of personal experience.

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The only question was how to rep-resent the tree most effectively. A brainstorming session followed, with suggestions first for a picture, then a painting, and finally a three-dimen-sional representation of a tree that could be moved around if needed.

Melissa contacted Creative Services Director Mike Sexton, who conveyed his vision for the design to a company that produces graphic arts projects, and later formulated the words and type. The months-long project culminated with delivery of the Tree of Life inside the room used for exchanging patient reports, eating meals and taking short breaks from the constant pressure of the job.

Melissa and several other nurses were there to see it. They couldn’t muster any words at first. Instead, they simply stared at the little tree: lost in their own thoughts of children they had fought and fought to keep alive—and then, of coming to the eventually painful point of preparing those children to give life to someone else.

As news of the tree’s presence spread, more and more nurses stopped in the room to see it.

“Everyone who walked in, it would just bring them to tears,” Melissa recalled. “People just looked at it—and felt its meaning.”

But sometime around 6 p.m. that same day, the meaning of the tree grew unexpectedly more profound.

A young boy had lost his life. His organs had been donated to help other children. Only a few hours after arriving, the tree had a butterfly—with small white wings bearing the hand-written first name of the child whose life had ended but given flight to others.

“It’s surreal how those things happen,” Melissa said softly.

Other nurses felt the power of the tree as well, in their own ways.

“It’s a good way to show that what we do doesn’t end here, that life goes on,” said Brittany Krehely.

A few feet away, Liz Halterman found meaning in the tree for fellow nurses as well as the children whose lives it celebrated.

“Everything we do, and all the emotions we go through, it’s almost like tree makes us feel appreciated,” she said.

Then there was Traci.

She wasn’t at work that day to see the creation she helped bring about.

When she arrived the next morning and stepped into the conference room, she noticed the tree—and then grasped the impact of the butterfly in a wave of emotion.

“My heart skipped a beat,” she said. “It really hit home.”

In fact, it hit home for a deeply personal reason—a part of what fueled her resolve to create the tree memorial in the first place.

Five years ago, Traci suffered a devastating loss with the death of her 11-year-old son, Hamil, from complications of cerebral palsy. He was born prematurely at 25 weeks and spent the first six months of his life in All Children’s Neonatal Intensive Care Unit. Affectionately nicknamed Papi, he became an organ donor at All Children’s, giving life and hope to other children.

“It meant so much to me to be able to donate,” she said. “It gave me something when I had nothing, a little bit of hope for someone else, I guess. I still think about the kids who got his organs and how they may be doing now, how old they may be and when I get organ recipients in the unit I always think of him and the parents who donated on their children’s behalf.”

There’s something else to know about Traci. She studied to become a nurse because of Hamil, initially hoping to join All Children’s NICU and become part of the caring network he experienced at All Children’s. But there were no openings when she earned her degree after his passing, and instead got a job in the PICU. “That’s where I firmly believe I was meant to be,” she said.

Tree of Life, continued

They couldn’t muster any words at first. Instead, they simply stared at the little tree: lost in their own thoughts of children they had fought and fought to keep alive—and then, of coming to the eventually painful point of preparing those children to give life to someone else.

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19

M ention the words “pal-liative care,” and many people immediately think

of hospice and end-of-life services.

In truth, it’s so much more.

Patients with life-limiting or potentially life-threatening illnesses and injuries stand to

benefit from the new All Chil-dren’s Palliative Care Program. This

includes preemies, pediatric ICU patients with life-threatening infections or injuries, youngsters with cystic fibrosis, cancer or kidney disease, heart transplant recipients, patients with complex neurologic problems or genetic syndromes - almost half of all the patients admitted to All Children’s for care.

The Pediatric Palliative Care Program is made possible through a $900,000 pledge from the All Children’s Hospital Guild - 450 volunteer advocates in four counties throughout the Tampa Bay area who have contributed more than $10-million for hospital programs and expansion since 1985.

“The Pediatric Palliative Care program provides a coordinated, comprehensive and above all compassionate approach to caring for children with life-limiting or potentially life-threatening illnesses and injuries,” said Tricia Davidson, Chair of the All Children’s Hospital Guild. “All nine branches of our Guild will contribute to this pledge to enable the Palliative Care program to grow so that it can help more patients and their families.”

The program provides support through a team including a doctor, nurse, social worker, child life therapist, chaplain and pain

management nurse. Together, they address concerns of pain management, symptom control and quality of life for patients. The goal is to help children and their families live as normal a life as possible.

“We strive to reduce pain and suffering while supporting both the patient and family in making decisions about care,” explains pro-gram director Laura Drach, MD. “Throughout this process, we’re always mindful of each family’s choices, values and cultural tradi-tions. Our program gives support not only to the patient and parents, but to siblings and grandparents as well.”

In addition to underwriting these much-needed and often underfunded support services, the Guild gift creates an endowment to ensure that the program will grow in the future through a Palliative Care Fellowship to provide training, enhanced patient care, valuable medical research and education in Palliative Care.

Above all, the Pediatric Palliative Care Program at All Children’s demonstrates a core commitment—that caring doesn’t end when curative care options are exhausted.

Perhaps the late author and pediatric pallia-tive care advocate Mattie Stepanek (1990-2004) summed it up best:

“Palliative care no longer means helping children die well, it means helping children and their families to live well and then, when the time is certain, to help them die gently.”

—Ann Miller

She went to work in the same unit where her son’s organs were donated, giving comfort each day on the job—along with her fellow PICU nurses—to other sick or injured kids and their families.

Just as the tree of life is now a source of comfort to the caregivers.

“It so important for the nurses to know the impact they are making,” Traci said, “and to know that the life we weren’t able to save, maybe in the end it can save many others.”

The staff is currently discussing ideas for how to visually represent the children who receive organs—perhaps on an attached scroll or with butterflies placed in a cloud above the tree.

Whatever the solution, the tree already has taken on its own life, quietly heartening the nurses of the PICU amid the heartbreak that comes with the territory.

“Nursing anywhere deals with loss and sadness, and difficulty and stress,” Melissa said. “That is the life of the ICU, unfortunately. Half of our population is scheduled types of patients who will do well. They’ll come in. They had a great surgery. They’ll recover. They’ll go home.

“The other half is just related to what happens in the community. And unfortunately, that’s accidents. That’s kids falling out of buildings. That’s kids falling in pools. It’s the nature of life. That’s what we do here.”

And why a simple little tree, far removed from the holiday-season glow, shines so bright.

—Dave Scheiber

Helping Children & Families to Live WellAll Children’s Hospital Guild Pledge Underwrites Palliative Care

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Samantha Bass was the picture of health when she was born in July of 2005.

Twelve days later, she was in intensive care at All Children’s, fighting for her life—all because of a severe case of dehydration.

“Newborns who become dehydrated can sometimes have hypercoagula-tion,” explains pediatric intensivist Perry Everett, MD. “Their blood tends to clot in places that it shouldn’t clot, particularly in blood vessels.” In Sami’s case, the clot lodged in one of the worst possible places—her aorta, the major vessel coming out of the heart that feeds oxygen-rich blood to every organ system in the body.

Sami’s clot extended all the way into arteries feeding her kidneys. “There-fore, her kidneys couldn’t work,” recalls pediatric nephrologist Sharon Perlman, MD. “They couldn’t clean her blood. They couldn’t make urine. She had pretty severe kidney failure.”

Dialysis in newborns is difficult and dangerous. Blood-thinning agents

that might dissolve the clot carry added risks in newborns who are already susceptible to bleeding in the brain. When standard treatment op-tions didn’t work, attention turned to alternatives more risky for a patient so small.

“Sami was born with no medical problems and this was a tragedy,” says pediatric intensivist Michele Smith, MD. “And if there was something that we could provide to change that course, then you do everything you can. Luckily, that meant looking in the literature to find someone else had experienced this and wrote about it.”

The article Smith found documented the successful use of an extremely high-risk procedure. Doctors at the Johns Hopkins Hospital had guided a catheter through their patient’s tiny arteries and into the clot. Once there, they injected a powerful clot-busting drug, tPA.

All Children’s pediatric interven-tional radiologist Kevin Potthast, MD would take on the challenge of threading the catheter through Sami’s tiny arteries, no thicker than a pencil lead. A team of doctors and nurses in intensive care would then

From Saving Sami

To A New Era of Treatment The Thrombosis Program at ACH-JHM Adds An International Leader in Children’s Clotting Disorders

Then and Now – Seven years later, Sami still has enough personality to light up a room.

Continued—

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21

SAMI

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keep vigil over Sami, managing the risks of her chemically-thinned blood, while parents Cindi and Vaughn prayed that fragments of the clot wouldn’t dislodge and cause catastrophic damage to their baby girl’s brain, heart or lungs.

Fast-forward nearly eight years, and Sami is a bright, outgoing big sister to little brother Stone.

All Children’s Hospital is Johns Hopkins Medicine’s only member hospital outside of the Baltimore/Washington DC metro area.

And one of the world’s leading ex-perts in clotting disorders in children has come to St. Petersburg, FL to establish a program to help children like Sami and further research efforts toward new treatment options.

New Program—International LeaderThe Pediatric Thrombosis Program at ACH-JHM in St. Petersburg, FL combines the expertise of All Chil-dren’s Hospital and Johns Hopkins Medicine for children who have developed a blood clot in the veins (venous thrombosis) or arteries (arterial thrombosis). Services extend from inpatient to outpatient care, consultation, and access to the latest research developments in treatment. The program participates in—and even leads—a variety of clinical trials.

Program director Dr. Neil Golden-berg was recruited by ACH-JHM in 2012 from one of the top pediatric blood clotting programs internation-ally, the Mountain States Regional Hemophilia and Thrombosis Center at Children’s Hospital Colorado, to lead the pediatric thrombosis programs at ACH-JHM and the Johns Hopkins Children’s Center in Baltimore. The physician team also includes Dr. Irmel Ayala, who has led the All Children’s bleeding and

clotting disorder clinics at the main hospital in St. Petersburg and its Outpatient Care Center in Tampa for over a decade. The ACH-JHM pro-gram provides a variety of services for pediatric thrombosis patients and their families in a comprehensive, multidisciplinary setting.

How Are Blood Clots Treated in Children?Reports have indicated that the rate of thrombosis in U.S. children has dramatically increased in recent years. While clots are less common in children than adults, the con-sequences of these clots can have tremendous impact on the growing bodies of young patients. This can also raise concerns about their future participation in sports and active lifestyles. Even though clots often occur in children with other under-lying medical conditions, whenever a clot occurs in a child there is a need for expert care. And future risks should not be overlooked.

Evaluation and treatment of chil-dren with thrombosis begins with radiologic imaging to establish the

Now almost eight years old, Sami participates in school and softball and all the things one would hope for. Her family knows those hopes were made possible in part through the team in St. Petersburg that saw Sami through those frightening early weeks.

22

From Saving Sami, continued

Neil Goldenberg, M.D. Irmel Ayala, M.D.

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extent of the clot and its impact on blood flow to other parts of the body. Doppler ultrasound, CT, or MRI scan may be used, depending on the location and extent of clot. Specialized labora-tory testing of a child’s blood clotting system is vitally impor-tant. Administration of blood thinner medication is often a first response. Follow-up laboratory testing and radiologic imaging to monitor the treatment’s effects provide information that is key to decision-making on how long such treatment should continue. After treatment is complete, patients and families need edu-cation on measures to prevent further blood clots, including guidance on future situations in which temporary use of blood thinners may be recommended. In each step along the way, the fact that the patient is a growing child makes it essential that care be provided by a devoted team of pediatric experts in blood clot-ting and related specialties.

Pediatric Focus Is KeyThe multidisciplinary thrombosis team at All Children’s is focused solely on treating infants, children and teens who have developed a blood clot in the veins or arter-ies. It also provides evaluation of infants, children, and teens who have a family history of blood clots before 50 years of age, and therefore may be at risk for developing young-onset blood clots themselves. Our pediatric thrombosis doctors have devoted their careers to caring for children who experience a stroke and strive to provide the best possible outcomes for their patients.

Dr. Goldenberg is recognized as one of the world’s authorities in the care of children and young adults with thrombosis, and is consulted by hematology colleagues throughout the U.S. to provide expertise in com-plex patient management. Monthly videoconference meetings run by Dr. Goldenberg draw physicians from such diverse institutions as Tulane, Boston Children’s Hospital and Texas

Children’s Hospital to discuss their most challenging patients with their All Children’s—Johns Hopkins peers.

Dr. Goldenberg has a leadership role in several national/inter-national guidelines committees in pediatric thrombosis, and is also helping to lead a national pediatric hospital network effort on preventing blood clots and their complications in hospital-ized children. In addition, Dr. Goldenberg is a 2012 recipient of the international Eberhard F. Mammen Excellence in Throm-bosis and Haemostasis Award, and is a leader in several national/international clinical trials of pediatric thrombosis.

Because of the rarity of throm-bosis in children, few physicians have extensive experience in treating this problem and preventing short-term and long-term consequences. The potential issues can be serious and long-lasting, from bleeding complications of blood thinners to persistent blockage in blood flow, despite a routine course of treatment with blood thinner

medication. Second blood clots can develop. Blood vessels them-selves can be damaged by the clot. Drs. Goldenberg and Ayala have

a combined experience of manag-ing over 1,000 pediatric thrombosis patients in the past 10 years. It’s this experience—combined with their involvement in the latest national/international guidelines and clinical research studies—that helps them to quickly determine whether a child is at high versus low risk for those potential long-term complications.

23

Continued—

In the Game—Sami’s difficult start hasn’t kept her from leading an active life, especially in her favorite sport —softball.

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From Saving Sami, continuedAn individualized treatment and follow-up plan is then developed for each patient, in order to achieve the best outcomes for each infant, child, and teen.

It Takes a Broader TeamClots in children can occur almost anywhere—in the veins or arteries of the limbs, brain, lungs, heart, liver, kidneys, or other vital areas of the body. Because of this, a pediatric hematologist (or blood specialist) who specializes in thrombosis often relies on the expertise of a variety of pediatric specialty physicians and health care providers.

When children are first hospital-ized with thrombosis, our multi-disciplinary care team consists of pediatric intensive care physicians and nurses, pediatric hematologists, pediatric radiologists, pediatric anesthesiologists, pharmacists, child life specialists, social workers, dis-charge planners, research personnel,

and any other specialists that an individual child’s condition might warrant.

In the outpatient setting, our mul-tidisciplinary clinic involves Drs. Goldenberg and Ayala as pediatric hematologists with specialized expertise in thrombosis, an antico-agulant (“blood thinner” medication) pharmacist, a pediatric thrombosis nurse and research personnel. Visits are coordinated with other appropri-ate specialized physicians who are experts on organ systems affected by the blood clot or any underlying chronic medical conditions—for example, pediatric cardiologists, for children with congenital heart dis-ease who have developed blood clots.

Care continues even after a patient goes home, with an expert pediatric physician-pharmacist team focused on adjusting and monitoring dosages of any blood-thinning medications that a teen or younger child might require. Testing essential to making

the right medication decisions can be done at All Children’s or a variety of outpatient labs. And in either case, our thrombosis program continues to review results and coordinate care with the patient’s primary care provider.

After all, getting a patient back home—and to a normal routine—is the ultimate goal.

It’s a goal Sami has clearly achieved. Now almost eight years old, she participates in school and softball and all the things one would hope for. Her family knows those hopes were made possible in part through the team in St. Petersburg that saw Sami through those frightening early weeks.

As mom Cindi says, “We wouldn’t have Samantha if All Children’s wasn’t there.”

—Ann Miller


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Ace Hardware CorporationAll Children’s Hospital EmployeesAll Children’s Hospital Foundation Development CouncilAll Children’s Hospital GuildAflacAmerican LegionAmerican Legion Auxiliary Busch Gardens TampaChico’s FAS, Inc.COSTCO Cure on WheelsDairy QueenDavid Reutimann Charity/Silverado Golf & Country Club Duke EnergyFGCU Dance Marathon49th Street South Business AssociationGator Region Florida Club Managers Association of AmericaHMSHostHSNIHOPJabil

Joto’s Pizza and Rachel M. Thrower Memorial Marriott International, Inc.Marriott Vacations WorldwideThe Mosaic CompanyNortheast Exchange Club of St. Petersburg, FLPlumbers and Pipefitters LU 123 & The MCA ContractorsPricewaterhouseCoopers LLPProject Bailee, Inc.Publix Super Markets, Inc.RE/MAXSagicor Life Insurance CompanySam’s ClubSuncoast Schools Federal Credit Union FoundationSunocoTampa Chapter of Credit Unions TransamericaUltimate Medical AcademyUSF Dance MarathonVF Licensed Sports GroupWalmart

2013 Telethon Grand DonorsEach of the businesses, civic groups and individuals listed here has pledged a substantial commitment—$10,000 or more—to the All Children’s Hospital Telethon. Please remember them as you do business in our community!

These generous businesses and individuals have donated goods and/or services to help make our Telethon efforts possible.We thank them for their support!Angelica Textile ServicesBlue Bell Ice CreamBMC GraphicsCapital CarpetsC&D PrintingChromaGraphics, Christina EvansCoca Cola Bottling CompanyCreative ArtsRonnie DeeEmpire Office, Inc.Frame Station & GalleryGeorge Harris/Creative World RecordingHSNJesuit High School Key ClubMaggiano’s Little ItalyModern Mail and Print SolutionsNational Orders and National 2Way RentalsPepsi Bottling GroupDave ReinhardtKevin Riley Animation717 ParkingSodexo Healthcare ServicesSt. Pete Bagel, Co.SyscoVanguard Payment ServicesValleyCrest Landscape MaintenanceRobin Taylor ZanderRobin Zander of Cheap TrickZeno Office Solutions

Media PartnersClear Channel Media + EntertainmentClear Channel OutdoorTampa Bay Times The Tampa TribuneWFLA.comWFLA News Channel 8WXCW WB6

Special Thanks

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NON-PROFIT ORG.U.S. POSTAGE

PAIDPERMIT NO. 5224

ST. PETERSBURG, FL

501 Sixth Avenue South St. Petersburg, Florida 33701

PLEASE NOTE: If you receive more than one TLC in the mail, it’s because your generosity is noted in our files more than once.

Check out our website atwww.allkids.org

Tune in for a Telethon

ThirTy years of Miracles

Saturday June 1st7:00 PM on WFLA News Channel 8Featuring former Telethon patient “stars,” a history of the hospital that community support helped to build and some famous surprise guests.

Phone banks will be open.

Don’t miss this chance to get our 30th Annual All Children’s Telethon off to a stellar start!

Sneak Peek!

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2013 telethon tlc

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