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TELETHON
2013
ALL CHILDREN’S HOSPITAL
Tender Loving Care
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ALL CHILDREN’S HOSPITAL
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.
1397651_ACH_CX.indd 2 5/2/13 2:46 PM
2	 Telethon Turns 30
It’samilestoneyearfortheAllChildren’sHospitalTelethon,withreflectiononhowfarwe’ve
come and a look ahead at expanding opportunities to improve children’s health care.
	 4	 Oliver
This 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	 Willie
Back 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 Built
As 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 Life
A 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 Well
All 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 Treatment
The 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 Care
is 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 Foundation
P.O. Box 3142, St. Petersburg, Florida 33731
Editor: Ann Miller
Contributing Writers: Ann Miller
Ellen Arky, Dave Scheiber
Photos: Mike Sexton,
Andy Merhaut
1
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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
TelethonTurns30
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3
All Children’s Hospital
2013
Telethon
June
2nd
Celebrating
30 Years
of 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.”
H
e 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
ALL CHILDREN’S HOSPITAL4
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
5
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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
ALL CHILDREN’S HOSPITAL6
“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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7
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.
“I
nstantly, 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.
ALL CHILDREN’S HOSPITAL
Continued—
8
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
9
Special Guests—WilliebroughthisgirlfriendRonei
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 Clues
There’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 Go
Up 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
ALL CHILDREN’S HOSPITAL
“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.”
10
Willie,continued
1397651_ACH_CX.indd 12 5/2/13 2:46 PM
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”
11
Willie and Friends—Willie with some of his co-workers at Hilton Worldwide Hotels in Manila, Philippines.
1397651_ACH_CX.indd 13 5/2/13 2:46 PM
12 ALL CHILDREN’S HOSPITAL
TheOtherHouse
ThatRuthBuilt
They 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
1397651_ACH_CX.indd 14 5/2/13 2:46 PM
13
Babe Ruth and daughter Julia on a cruise ship
during the barnstorming trip to Japan in 1934.
Photo courtesy of baberuthcentral.com
1397651_ACH_CX.indd 15 5/2/13 2:46 PM
“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.”
ALL CHILDREN’S HOSPITAL
TheOtherHouseThatRuthBuilt,continued
14
“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
1397651_ACH_CX.indd 16 5/2/13 2:46 PM
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.”
15
1397651_ACH_CX.indd 17 5/2/13 2:46 PM
16 ALL CHILDREN’S HOSPITAL
TreeofLife
The 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.”
1397651_ACH_CX.indd 18 5/2/13 2:46 PM
17
A Heartfelt Start—PICUnurse
Traci Gregory, RN came up with
the idea for the Tree, a concept
born out of personal experience.
1397651_ACH_CX.indd 19 5/2/13 2:46 PM
18 ALL CHILDREN’S HOSPITAL
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.
1397651_ACH_CX.indd 20 5/2/13 2:46 PM
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 Well
All Children’s Hospital Guild Pledge
Underwrites Palliative Care
1397651_ACH_CX.indd 21 5/2/13 2:46 PM
20 ALL CHILDREN’S HOSPITAL
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
FromSavingSami
ToANewEraofTreatmentThe 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—
1397651_ACH_CX.indd 22 5/2/13 2:46 PM
21
SAMI
1397651_ACH_CX.indd 23 5/2/13 2:46 PM
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 Leader
The 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.
1397651_ACH_CX.indd 24 5/2/13 2:46 PM
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 Key
The 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.
1397651_ACH_CX.indd 25 5/2/13 2:46 PM
20 ALL CHILDREN’S HOSPITAL
From Saving Sami,continued
An 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 Team
Clots 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
ALL CHILDREN’S HOSPITAL24
1397651_ACH_CX.indd 26 5/2/13 2:46 PM
Ace Hardware Corporation
All Children’s Hospital
Employees
All Children’s
Hospital Foundation
Development Council
All Children’s Hospital Guild
Aflac
American Legion
American Legion Auxiliary
Busch Gardens Tampa
Chico’s FAS, Inc.
COSTCO
Cure on Wheels
Dairy Queen
David Reutimann
Charity/Silverado Golf
& Country Club
Duke Energy
FGCU Dance Marathon
49th Street South
Business Association
Gator Region Florida
Club Managers
Association of America
HMSHost
HSN
IHOP
Jabil
Joto’s Pizza and Rachel M.
Thrower Memorial
Marriott International, Inc.
Marriott Vacations
Worldwide
The Mosaic Company
Northeast Exchange Club
of St. Petersburg, FL
Plumbers and Pipefitters LU
123 & The MCA Contractors
PricewaterhouseCoopers
LLP
Project Bailee, Inc.
Publix Super Markets, Inc.
RE/MAX
Sagicor Life Insurance
Company
Sam’s Club
Suncoast Schools Federal
Credit Union Foundation
Sunoco
Tampa Chapter of
Credit Unions
Transamerica
Ultimate Medical Academy
USF Dance Marathon
VF Licensed Sports Group
Walmart
2013Telethon
GrandDonorsEach 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!
Thesegenerousbusinessesandindividuals
havedonatedgoodsand/orservicestohelp
make our Telethon efforts possible.
We thank them for their support!
Angelica Textile Services
Blue Bell Ice Cream
BMC Graphics
Capital Carpets
C&D Printing
ChromaGraphics, Christina Evans
Coca Cola Bottling Company
Creative Arts
Ronnie Dee
Empire Office, Inc.
Frame Station & Gallery
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All Children's Hospital Telethon 2013: Oliver's Dream to Become a "Bone Doctor

  • 1. TELETHON 2013 ALL CHILDREN’S HOSPITAL Tender Loving Care 1397651_ACH_CX.indd 1 5/2/13 2:46 PM
  • 2. ALL CHILDREN’S HOSPITAL 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. 1397651_ACH_CX.indd 2 5/2/13 2:46 PM
  • 3. 2 Telethon Turns 30 It’samilestoneyearfortheAllChildren’sHospitalTelethon,withreflectiononhowfarwe’ve come and a look ahead at expanding opportunities to improve children’s health care. 4 Oliver This 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 Willie Back 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 Built As 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 Life A 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 Well All 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 Treatment The 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 Care is 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 Foundation P.O. Box 3142, St. Petersburg, Florida 33731 Editor: Ann Miller Contributing Writers: Ann Miller Ellen Arky, Dave Scheiber Photos: Mike Sexton, Andy Merhaut 1 1397651_ACH_CX.indd 3 5/2/13 2:46 PM
  • 4. 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 TelethonTurns30 1397651_ACH_CX.indd 4 5/2/13 2:46 PM
  • 5. 3 All Children’s Hospital 2013 Telethon June 2nd Celebrating 30 Years of Miracles 1397651_ACH_CX.indd 5 5/2/13 2:46 PM
  • 6. 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.” H e 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 ALL CHILDREN’S HOSPITAL4 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. 1397651_ACH_CX.indd 6 5/2/13 2:46 PM
  • 8. 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 ALL CHILDREN’S HOSPITAL6 “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 1397651_ACH_CX.indd 8 5/2/13 2:46 PM
  • 9. 7 OLIVERTough Little Guy—Oliver loves The Hulk, right down to the pajamas that give him super-strength on surgery day. 1397651_ACH_CX.indd 9 5/2/13 2:46 PM
  • 10. 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. “I nstantly, 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. ALL CHILDREN’S HOSPITAL Continued— 8 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. 1397651_ACH_CX.indd 10 5/2/13 2:46 PM
  • 11. WILLIE 9 Special Guests—WilliebroughthisgirlfriendRonei on a recent visit to see the new All Children’s Hospital and meet the care team that helped to save his life. 1397651_ACH_CX.indd 11 5/2/13 2:46 PM
  • 12. “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 Clues There’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 Go Up 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 ALL CHILDREN’S HOSPITAL “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.” 10 Willie,continued 1397651_ACH_CX.indd 12 5/2/13 2:46 PM
  • 13. 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” 11 Willie and Friends—Willie with some of his co-workers at Hilton Worldwide Hotels in Manila, Philippines. 1397651_ACH_CX.indd 13 5/2/13 2:46 PM
  • 14. 12 ALL CHILDREN’S HOSPITAL TheOtherHouse ThatRuthBuilt They 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 1397651_ACH_CX.indd 14 5/2/13 2:46 PM
  • 15. 13 Babe Ruth and daughter Julia on a cruise ship during the barnstorming trip to Japan in 1934. Photo courtesy of baberuthcentral.com 1397651_ACH_CX.indd 15 5/2/13 2:46 PM
  • 16. “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.” ALL CHILDREN’S HOSPITAL TheOtherHouseThatRuthBuilt,continued 14 “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 1397651_ACH_CX.indd 16 5/2/13 2:46 PM
  • 17. 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.” 15 1397651_ACH_CX.indd 17 5/2/13 2:46 PM
  • 18. 16 ALL CHILDREN’S HOSPITAL TreeofLife The 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.” 1397651_ACH_CX.indd 18 5/2/13 2:46 PM
  • 19. 17 A Heartfelt Start—PICUnurse Traci Gregory, RN came up with the idea for the Tree, a concept born out of personal experience. 1397651_ACH_CX.indd 19 5/2/13 2:46 PM
  • 20. 18 ALL CHILDREN’S HOSPITAL 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. 1397651_ACH_CX.indd 20 5/2/13 2:46 PM
  • 21. 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 Well All Children’s Hospital Guild Pledge Underwrites Palliative Care 1397651_ACH_CX.indd 21 5/2/13 2:46 PM
  • 22. 20 ALL CHILDREN’S HOSPITAL 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 FromSavingSami ToANewEraofTreatmentThe 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— 1397651_ACH_CX.indd 22 5/2/13 2:46 PM
  • 24. 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 Leader The 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. 1397651_ACH_CX.indd 24 5/2/13 2:46 PM
  • 25. 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 Key The 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. 1397651_ACH_CX.indd 25 5/2/13 2:46 PM
  • 26. 20 ALL CHILDREN’S HOSPITAL From Saving Sami,continued An 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 Team Clots 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 ALL CHILDREN’S HOSPITAL24 1397651_ACH_CX.indd 26 5/2/13 2:46 PM
  • 27. Ace Hardware Corporation All Children’s Hospital Employees All Children’s Hospital Foundation Development Council All Children’s Hospital Guild Aflac American Legion American Legion Auxiliary Busch Gardens Tampa Chico’s FAS, Inc. COSTCO Cure on Wheels Dairy Queen David Reutimann Charity/Silverado Golf & Country Club Duke Energy FGCU Dance Marathon 49th Street South Business Association Gator Region Florida Club Managers Association of America HMSHost HSN IHOP Jabil Joto’s Pizza and Rachel M. Thrower Memorial Marriott International, Inc. Marriott Vacations Worldwide The Mosaic Company Northeast Exchange Club of St. Petersburg, FL Plumbers and Pipefitters LU 123 & The MCA Contractors PricewaterhouseCoopers LLP Project Bailee, Inc. Publix Super Markets, Inc. RE/MAX Sagicor Life Insurance Company Sam’s Club Suncoast Schools Federal Credit Union Foundation Sunoco Tampa Chapter of Credit Unions Transamerica Ultimate Medical Academy USF Dance Marathon VF Licensed Sports Group Walmart 2013Telethon GrandDonorsEach 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! Thesegenerousbusinessesandindividuals havedonatedgoodsand/orservicestohelp make our Telethon efforts possible. We thank them for their support! Angelica Textile Services Blue Bell Ice Cream BMC Graphics Capital Carpets C&D Printing ChromaGraphics, Christina Evans Coca Cola Bottling Company Creative Arts Ronnie Dee Empire Office, Inc. Frame Station & Gallery George Harris/Creative World Recording HSN Jesuit High School Key Club Maggiano’s Little Italy Modern Mail and Print Solutions National Orders and National 2Way Rentals Pepsi Bottling Group Dave Reinhardt Kevin Riley Animation 717 Parking Sodexo Healthcare Services St. Pete Bagel, Co. Sysco Vanguard Payment Services ValleyCrest Landscape Maintenance Robin Taylor Zander Robin Zander of Cheap Trick Zeno Office Solutions Media Partners Clear Channel Media + Entertainment Clear Channel Outdoor Tampa Bay Times The Tampa Tribune WFLA.com WFLA News Channel 8 WXCW WB6 Special Thanks 1397651_ACH_CX.indd 27 5/3/13 7:49 AM
  • 28. NON-PROFIT ORG. U.S. POSTAGE PAID PERMIT 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 at www.allkids.org TuneinforaTelethon Thirty Years of Miracles Saturday June 1st 7:00 PM on WFLA News Channel 8 Featuring 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! SneakPeek! 1397651_ACH_CX.indd 28 5/2/13 2:46 PM