Faces and Places

“Noah Strength” Helps Local Mom Prepare to Tout All Children’s Hospital to D.C. Lawmakers

2015-06-04T15:49:00.001-04:00

Cherish Nero sits at a cafeteria table inside All Children’s Hospital, smiling at 7-year-old son Noah as he immerses himself in a Disney Junior video lighting up his iPad. She has been talking about the long, difficult road her little boy has traveled since the day he was born – a path that has been filled with just as many challenging turns for Cherish and husband Bill.

But whenever the young couple from Hudson, Florida feels the weight of their worries, they simply look at the second of their three children – Noah – and everything seems okay.

They know that the world-class care he receives at All Children’s Hospital Johns Hopkins Medicine in St. Petersburg for an array of challenges – including heart failure, cerebral palsy caused by a post-surgical stroke, autism and brittle bones – will keep him on course. In turn, Noah will keep his family going.

“He’s a wonderful boy, amazingly strong,” Cherish says. “We call it Noah Strength. If we have to get through something that’s hard, it’s time to pull up our Noah Strength. Because if he can do it, we can do it. With everything he’s been through, who are we to complain about something?”

Cherish, who projects a warm, upbeat demeanor, punctuated by frequent laughs, has been drawing extra strength from her son recently, preparing to travel with him to Washington, D.C., June 15-16 for Family Advocacy Day. She plans to tell lawmakers what hospitals like All Children’s mean for kids like Noah – and the desperate need for Medicaid funding to make vital, often life-and-death care possible.

Cherish had to leave her teaching job after Noah was born to devote herself fully to his care, leaving only Noah’s dad Bill, also a teacher, insured through work. Noah’s complex care is covered only by Medicaid.

“We rely on Medicaid, and I want lawmakers to see the face of a child whose life depends on the decisions they make,” Cherish says.

“Noah has gone through a lot and is lucky to have such a wonderful family,” adds All Children’s pediatric cardiologist Alfred Asante-Korang, M.D. “He’s done remarkably well, and his mom’s dedication has made a huge difference. He has some hearing and speech impairment, but he understands, and he’s coming along very, very well.”

The day after Noah was born, he began spitting up blood and had trouble breathing. An echocardiogram showed hypoplastic left heart syndrome, a complex birth defect in which the left side of the heart is critically underdeveloped.

The next thing they knew, Noah was aboard an All Children’s Hospital Critical Care Transport ambulance for an hour-long drive to St. Petersburg.

His first open heart surgery came at 3 weeks of age, a second one at six months and a third when he was 2. “He was 18 months old when his time at home finally exceeded his time in the hospital.” Cherish remembers. “It was such a big moment that we gave Noah a party.”

But more challenges lay ahead. The surgeries couldn’t save his heart due its particular anatomical issues. He was 3 when doctors recommended a heart transplant, but Dr. Asante-Korang (or “Dr. A-K”) was concerned that Noah’s developmental delays might prevent him from being considered a good candidate for transplant.

“Dr. A-K became our cheerleader as well as our doctor, urging us to get Noah caught up developmentally,” Cherish recalls. “I taught him sign language and we worked non-stop on standing and walking. He took his first steps when he was 4 and became fluent in sign language.”

Noah was approved for transplant and received his new heart at age 5, with pediatric surgeon James Quintessenza, M.D., performing the 16-hour operation. With a new heart, Noah quickly made developmental strides.

“He started talking, and everything was coming together,” says his mother.

Then Noah developed post-transplant lymphoproliferative disease (PTLD), a cancer-like complication that required two rounds of chemotherapy to bring under control.

In addition to follow-up cardiology care, the Neros are focused on other medical issues: osteoporosis (fragile bones) that requires regular trips to All Children’s for infusions; treatment for autism that was recently diagnosed; and physical, speech and behavioral therapy.

One day, Noah will need a new heart. But for now, he interacts playfully with his two sisters and continues to make progress. He loves to play baseball and basketball, is a big fan of Mickey Mouse and joins his family on 5K runs – being pushed on wheels – to help raise funds and awareness for people with special needs.

“I just know so many people are praying for him,” says Cherish. “He’s a miracle – it’s by the grace of God that he’s here.”

And moving forward, one day at a time, with Noah Strength.

A Home Run of a Visit by Rays’ Souza with a Teen In Need at All Children’s Hospital

2015-05-15T15:01:00.001-04:00

It was the morning after rookie standout Steven Souza Jr. of the Tampa Bay Rays blasted a mammoth home run to centerfield, a shot that proved the difference in a 3-2 victory over the arch-rival New York Yankees. But instead of sleeping in, or resting up for another showdown that night against New York, Souza made powerful contact of another kind.

He swung by All Children’s Hospital on his own, following the lead of teammate Chris Archer. The visit wasn’t tied to a sponsorship arrangement or a special event – only his desire to spend a little time with sick kids in need of a boost.

Steven Souza and Ben Doane during an April visit.

Souza spent an hour walking the halls of the hematology-oncology unit and Cardiovascular Intensive Care Unit, popping into rooms where tired or anxious parents sat beside the beds of a child receiving treatment. And with a natural, easy manner that mirrors his playing style, the 26-year-old Rays newcomer made everyone he spoke with feel a little bit better – even those who had no idea who he was before he showed up with a knock on their door.

But there was one patient in particular, an 18-year-old with leukemia, who couldn’t have been happier to see Souza – and Souza couldn’t have been more pleased to see him.

Ben Doane, a senior at Titusville High School, had met Souza and Archer last month when they made a similar unscheduled visit to All Children’s. The ballplayers hit it off immediately with Ben, a pitcher with college baseball aspirations whose dream was interrupted this year when it was discovered that he needed a bone marrow transplant. They proceeded to invite Ben and his family to a Rays game, and each player gave him a gift to buoy his spirits.

When Souza made his visit to the hospital on Thursday, May 14, he asked how Ben was doing – and promptly learned that Ben’s brother, Chris, was in the process of donating marrow for a transplant scheduled later in the day. Souza, who had no idea the procedure was imminent, immediately asked if he could stop by Ben’s room to share a few words of encouragement before the procedure.

Ben wasn’t feeling well, but instantly perked up at the surprise news that Souza wanted to see him. Donning a gown, mask and gloves, Souza stepped inside the room. It was a short meeting, less than three minutes, but the smile on Ben’s face made it clear how much the unplanned visit meant.

They made simple small talk about baseball and a restaurant they’d both been to recently. Ben spoke quietly as Souza kept the patter going, engaging the rest of the family as well. Sensing it was time to leave, he asked for the teen’s cell phone and keyed in his phone number.

“Text me and let me know how it goes. I’m with you bro.”

As he headed down the hall to visit more patients, Souza reflected on why he likes visiting with sick children, something he also did last year in Washington, D.C., after a debut with the Nationals.

“I think we’re so lucky to be able to do what we do,” he says. “Our culture tends to lift up professional athletes. So using that platform to give a boost to kids in need is the best thing you can do. To see Ben smile today – on a day that probably wasn’t going to be easy for him – means the world to me. And it’s the best thing I could do with my time.”

All Children’s Teen Thriving After Leukemia Treatments, Counting Days to ACH Homecoming

2014-09-30T10:59:00.000-04:00

Alissa VanWanzeele has her focus fixed squarely on the future these days, eager to re-embrace a life filled with possibilities and to part with a recent past of pain and uncertainty.

The St. Petersburg 13-year-old is looking forward to attending her second All Children’s Hospital Homecoming Dance on Oct. 11. But an even bigger date looms in November, when Alissa will undergo her final round of chemotherapy for treatment of acute lymphoblastic leukemia (ALL), which turned her world upside down the week before she was to start middle school in 2012.

Today, Alissa is one of the countless stories of hope and courage during September’s Cancer Awareness Month and another example of the state-of-the-art care and treatment offered by the Johns Hopkins All Children’s Cancer Institute. Her parents, Lemi and David, feel immense pride over the way she has dealt with the discomfort and disruption in her life, and remain grateful to All Children’s and friends from church and school who have been there each step of the way since Aug. 8, 2012.

That’s when everything changed for Alissa. She had been an active, healthy 11-year-old who loved to read and excelled in her classes at St. Paul’s Catholic School in St. Petersburg.

“The weekend before she was diagnosed, she’d got gotten sick with vomiting, and we were thinking it was just some kind of a virus,” says Lemi. “But then her face started swelling up, which is something we’d never seen before.”

The parents of four children – including Alissa’s older sister, Shaina, and two young brothers, Dale and Isaiah – were perplexed and concerned. “I work in health care as a physical therapist, so I’m around illnesses, but this worried me, because Alissa has allergies and mild asthma, and I didn’t want this to cause her problems with breathing,” Lemi recalls.

A trip to the doctor’s office followed, and the diagnosis was a virus. They were briefly relieved. But the swelling remained and Alissa seemed sicker than ever. “As her mom, something didn’t add up to me, so we decided to take her to the Emergency Center at All Children’s,” Lemi recounts.

She and David, on break as a Pinellas County public school teacher at the time, brought their daughter in on a Tuesday evening. Tests were performed, and a doctor delivered the jolting news: Alissa had leukemia and needed to be admitted to the intensive care unit right away. “Her white blood cell numbers were through the roof – they were amazed she hadn’t had a stroke,” Lemi says.

The shock was softened somewhat when the All Children’s hematology-oncology team told them the type of leukemia their daughter had was one of the most common, with a high cure rate. “We were told if you’re going to get leukemia, this is the best type,” Lemi remembers. “It still hit us hard that night. Alissa didn’t even look that sick, but here we were being transported to the ICU. The good news is we caught it just in time, because her white blood cell count was so high – she was about to have real problems otherwise.”

The family’s strong religious faith helped them weather the storm ahead and not dwell on fear or anxiety. The gravity of the ordeal truly sunk in for Alissa when she became ill from the chemotherapy, and her long black hair fell out. She dealt with that by developing a signature look with an array of colorful scarves. The treatment plan also included radiation, but Alissa persevered. “The first eight months were the roughest,” says her mom. “She was in and out of the hospital.”

Lemi found her own way to handle the situation with the help of Shaina, creating and updating a Facebook page (Prayers and Wishes for Alissa). That served as a helpful and therapeutic way to keep family and friends up to date.

Alissa’s treatment proceeded with good results throughout the coming months, and she kept up with her sixth-grade curriculum through online classes and tutoring from her father. He left his teaching job to devote all his energy to helping his daughter keep up academically, driving her to appointments and help run the family business.

She returned to school at St. Paul’s by December, and has steadily gotten better thanks to her monthly treatments. In the fall of 2013, one of her highlights was attending the inaugural ACH Homecoming Dance, bringing along several friends to share in the memorable evening.

Now, Alissa is already counting the days to the next Homecoming Dance, having picked out a special purple dress from outfits donated to ACH for its Dress Shop event.

“I’m really excited,” she says. “It’s going to be so fun bringing all my friends and taking pictures.”

It wasn’t hard for Lemi to tell how much the event means to her daughter: “When she saw the flier for the event coming up, she would not stop bugging me, ‘Mom, mom, we have to RSVP!’ I think the event is just so wonderful. I saw so many smiles last year – and again when they were picking out dresses.”

Alissa, like her parents, is grateful for all the kindness showered up her during the past two years. “Everyone around me is always supporting me,” she says. “My school was really flexible when I came back, helping me with all my work. And all the doctors and nurses and everybody at All Children’s have taken great care of me. I’m really excited that I’ll be done with my chemo in November, too.”

Adds Lemi: “Everybody has been so great. We’ve had so much support from St. Paul’s – not just the staff and teachers but the families. For months, they would bring us food. Our church at St. Joseph’s is another amazing community that helped us. And we can’t say enough about All Children’s and everything they’ve done for Alissa and our family.”

One more key date awaits Alissa, stemming from a promise her parents made her to mark the end of chemotherapy as a way of boosting her spirits. “I get to pick out a puppy,” she says. But Alissa has already found a way to boost spirits herself.

“There’s a little girl I know who was just diagnosed with the same kind of cancer, and her dad came to talk to me and he said that I inspired them,” she says. “That makes me feel really good.”

All Children’s Cancer Patient Cole Eicher Lifts Spirits of Family, Friends and Even Pro Athletes

2014-09-09T13:50:00.000-04:00

When you meet Cole Eicher, what stands out first are his eyes – bright, blue and filled with life – and the broad smile that lights up his face at any given moment.

He is a portrait of strength, even amid suffering. He is a source of inspiration to family, friends and two local pro sports franchises in the way he has faced fear and uncertainty.

And he is an uncommon 12-year-old patient at All Children’s Hospital Johns Hopkins Medicine who has weathered the storm of cancer with courage and grace, proudly displaying his bald head after his locks of blond hair were lost to chemotherapy.

Most of all, he is “Cole Strong.”

That rallying cry appears on countless rubber wrist bands, created and sold by friends and staff at Grace Lutheran School in St. Petersburg. They raised some $5,400 for Cole after he underwent surgery in February to remove a malignant brain tumor. He was overwhelmed by the gesture, but insisted on donating it to the place that has provided his care.

Less than a year ago, Cole never would have imagined the role All Children’s and its world-class hematology-oncology and bone marrow clinical teams would play in his life. His days were packed with fun and fulfillment – as a standout midfielder on his school and club soccer teams, competing with the latter last October in Germany; in his fifth year of a rewarding modeling career, doing shoots for national companies; getting cast as an extra in the upcoming movie Dolphin Tale 2; and excelling in studies at Grace Lutheran Church and School in St. Petersburg.

But then came a bout of severe headaches and vomiting during Thanksgiving weekend of 2013. Cole and his mom, Laura, had just come straight from a morning shoot in Miami, joining his dad, Scott. Food poisoning didn’t seem likely, since nobody else became ill. “We thought that it was the flu, and it went away,” Cole recalls.

In January 2014, however, the same symptoms mysteriously returned during a local soccer tournament. “My dad came to the game and I wasn’t feeling well the whole time," Cole says. “I came off the field and said, ‘I don’t think this is the flu, Dad.’ I think this is something else’ ”

Laura and Scott immediately took Cole to the pediatrician. When blood work came back normal, the doctor suspected adolescent migraines as the cause. Soon after, though, Cole began to experience episodes of double vision. A visit to the ophthalmologist revealed a weak muscle in one of Cole’s eyes, potentially triggering the migraines.

Not wanting to take any chances, the Eichers brought their son to All Children’s for an evaluation by a specialist, who immediately ordered an MRI of the brain. “It took about two hours, and when it was over, they separated us and I was like, ‘Okay, this isn’t good,’ ” Laura recollects. “We knew right then, and your heart kind of stops. But we all just handled it.”

The diagnosis was delivered by pediatric neurosurgeon Carolyn Carey, M.D. It was a medulloblastoma, a brain tumor located at the base of the cerebellum, the area of the brain tied to motor function. It’s the second most frequent cancer in children behind leukemia. Laura called her husband, then raced home to pack and bring back clothing and necessities for an extended stay. Brain surgery was scheduled for two days later, barely time for Cole to process what was going on. “I was more shocked than scared, because I hardly ever get sick,” he says. “I never expected this.”

The surgery, performed by Dr. Carey and pediatric neurosurgeon Luis Rodriguez, M.D., lasted five hours and was a success. Almost the entire tumor was removed and Cole had minimal post-surgical complications. Fortunately, Cole’s prospects are excellent. He has been cared for at one of the select few hospitals in the country that treats medulloblastoma, utilizing a complex procedure involving high dose chemotherapy and autologous stem-cell rescue and transplant.

“These patients have their own stem cells harvested before they have any treatment at all,” explained Stacie Stapleton, M.D., director of Pediatric Neuro-Oncology at All Children’s Hospital Johns Hopkins Medicine. “After harvesting the stem cells from the blood or bone marrow, the patients receive radiation to their whole brain and spine, and then they receive four cycles of high dose chemotherapy, each cycle followed by infusing the patient’s own stem cells back to them that were collected at the beginning. The four cycles are delivered to the patient over about four months.

“The treatment has an advantage because it lowers the total dose of some of the more toxic chemotherapies in order to reduce many of the short- and long-term side effects. In addition, it’s a shorter protocol, so patients can get back into their regular lives faster, which provides an overall improved quality of life. It also has the same cure rate as other standard protocols, but these other protocols take a much longer time and typically have more side effects.

“At All Children’s, we have all the specialists available for the neurosurgery, the specialized neuro-oncology protocols, all the supportive care that may be required with these complicated procedures and protocols – and world-class doctors and support staff who can handle everything.”

As for Cole, Dr. Stapleton adds: “I think he’s doing great. He’s persevered through a lot and is getting back to doing what he loves.”

Still, it has been a rough ride the past seven months. For a time after the operation, his left hand was not fully responsive. When he walked, he felt unsteady – a strange sensation for a youngster accustomed to sprinting up and down soccer fields. He endured the stem cell harvesting, 30 rounds of radiation (performed at a hospital within ACH’s affiliate network), and chemotherapy that made him feel nauseous and weak. And Cole still has double vision that may correct itself naturally or may require surgery in the future.

“My faith has really helped me,” he says. His mom concurs. “When he was going through some really tough times initially, he would think, ‘Okay, I’m not alone,’ ” she explains. “If he didn’t have a strong faith, it would have been very hard on him. He’d have been, ‘Why me?’ ‘Why was this so random?’ “

Cole admits to having some of those thoughts early on, but he didn’t dwell on it. “The other thing that’s helped,” says Laura, “is that he just thinks about what’s happening in the present. He’s like, ‘What are we doing today? Oh, a shot’ or ‘oh, I’m having a blood test.’ Every night, he just asks, ‘What’s the plan for tomorrow?’ He just stays in the moment.”

Some of those moments have been made especially nice, courtesy of the Tampa Bay Rowdies of the North American Soccer League and the Tampa Bay Storm of the Arena Football League.

With the help of friends and neighbors, Cole’s story reached the Rowdies front office. And in April, club general manager Perry Van Der Beck showed up with players Shane Hill and Georgi Hristov at Cole’s club soccer field. The Rowdies had offered to come to the Eicher’s house, but Cole wanted his many teammates to be part of the visit. And what a visit it was: Van Der Beck surprised the youngster by pulling out a contract and signing him on as an honorary member of the Rowdies, and presenting him with official team gear. (Watch the video). Sitting at a picnic table, Cole grinned ear to ear.

The Storm also stepped up big when word of Cole’s ordeal was brought to their attention. They invited him to a practice, gave him his own locker and presented him with team gear and his own jersey. Unable to practice due to his unsteadiness, Cole still got V.I.P. treatment, especially from star wide receiver Amarri Jackson. When Cole showed up on the field a few minutes late, Jackson greeted him playfully, “You’re gonna get fined $2!” Later, the two stood together on the field prior to Tampa Bay’s 35-34 victory over the rival Orlando Predators.

Jackson was by his side once again in the hospital when Cole went for his first round of chemo. And during the World Cup this past July, Rowdies star Keith Savage came to the Eicher’s house and watched a game with Cole. Last month, a huge sign was held high at a Rowdies game with the message, “Cole Makes Us Stronger.”

Meanwhile, Dolphin Tale 2 co-stars Nathan Gamble and Austin Highsmith were seen wearing the special wrist bands at the Los Angeles premiere, and plan to give ones to other members of the star-studded cast at the local premiere of the movie Wednesday, Sept. 10 at Ruth Eckerd Hall in Clearwater.

His final round of chemo begins the day after the premiere, followed two weeks later by his 13th birthday. Easing back into a regular school schedule could happen in October, with soccer not far off. His family and friends marvel at the way he has handled so much, so well. Two words explain it.

Cole Strong.

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A Moment Worth Catching: Rays’ Kiermaier and a Little Fan at All Children’s Hospital

2014-06-24T16:25:00.001-04:00

Kevin Kiermaier has made quite a splash in his short tenure this season with the Tampa Bay Rays, not just with his bat but with an array of memorable catches. Yet the rookie outfielder could have a tough time topping the grab he made Tuesday morning at All Children’s Hospital.

Kiermaier had just stepped into the room of a 2-year-old patient named Steven, amid making the rounds with reliever Jake McGee to offer some smiles, words of support and autographed baseball cards.

At that very instant, Steven’s 6-year-old big brother, Carson, looked up from the TV show he was watching across the room. He's a quiet child so what happened next took everyone by surprise. He leaped off the couch and shouted, “KEVIN KIERMAIER!!”

Without missing a beat, Carson ran across the room and lunged into the 24-year-old ballplayer’s arms. Ever the defensive standout, Kiermaier caught hold of him and they hugged for several seconds – one more highlights-reel moment for the Rays newcomer.

Veteran athletes don’t often get that kind of reaction in their room-to-room visits. But Carson loves the Rays and he’s been paying close attention, it seems, to the play-making Kiermaier while watching the team’s games on the TV in his little brother’s hospital room.

All of sudden, there he was – the real-life baseball player, and Carson couldn't believe his eyes.

"He is never like that with anybody," said his mother, Tracy Knott. "He tends to be a little shy, especially with people he doesn't know."

“I was shocked to see him do that,” added his grandmother, Phyllis Knott, chuckling at the recollection. “He absolutely loves the Rays and watches them all the time, and he loves playing baseball.” Mostly he plays in the yard of his parents’ home in Clearwater, with grandma tossing him tennis balls and Carson giving them a whack.

But despite Carson’s interest in baseball and the Rays, she had no idea that he knew who Kevin Kiermaier was – or that he’d be so thrilled to see him. “And Kevin was so nice,” she added. “He embraced that moment for Carson, and that was really sweet of him to do.”

For Kiermaier, making his first visit to All Children’s, it was just as special.

“That’s very, very rare for a little kid to do that,“ he said. “For him to yell, ‘Kevin Kiermaier’ right when I walked in and then give me a hug, that was pretty wild. It was just really cool that he was so happy. That’s what it’s all about. That’s why we come here, for times like that. It’s hard to put into words.”

No need. This time, a little boy said it all.

Kevin Kiermaier! Rays rookie captures a memory with Tracey, Carson and Phyllis.

See more photos from the visit by Rays' Kiermaier and McGee.

Special Care for Special Kids at Johns Hopkins All Children's Heart Institute's Williams Syndrome Clinic

2014-06-23T11:11:00.000-04:00

They came from as far away as South Florida and Alabama, parents and young children buoyed by a day filled with specialized medical treatment, helpful information and hope.

The event that drew them to St. Petersburg was the bi-annual Williams Syndrome Clinic held by the Johns Hopkins All Children’s Heart Institute this past May. The families that attended shared a powerful bond in the unique spectrum of traits that link their young ones – and in the knowledge they are not alone in their journey.

Back home, those defining characteristics make Williams syndrome children stand out for their differences; yet what mattered here were their similarities and a reassuring sense of community that connected the families and staff.

Camila traveled with her mom from Miami for the WS Clinic.

Parents not only had their children examined by a range of expert All Children’s Hospital physicians but had a chance to talk to other families and learn more about Williams syndrome: a rare genetic disorder that occurs in roughly one of 10,000 births. It is marked commonly by heart, gastro-intestinal and kidney problems, a pixie-like facial appearance, mental ability from low average to mildly retarded, excellent verbal skills, a highly social demeanor and, very often, a passion for music.

The clinic is one of only 12 in the United States and has been an enormous help – both for new WS parents desperately seeking guidance and those with experience raising a Williams child. And it’s an example of how All Children’s is helping lead the way nationally with clinics that offer highly specialized, one-stop care, designed to help children with multiple needs.

Offered in the fall and spring, the clinic attracts families from around Florida and beyond – on this day from Miami, Jacksonville and Ashford, Ala. – to be seen by All Children’s specialists in cardiology, nephrology, GI, neurology, genetics, endocrine, ophthalmology, audiology and developmental delays. And as it grows, the clinic hopes to add specialists to help in other areas of need for Williams syndrome patients, such as physical therapy, occupational therapy, speech/language and psychology. Growth is already on the horizon: The one-day clinic will be held over two days this fall for the first time, Oct. 9-10.

Hudson greets baby Liv, held by volunteer Alicia Klingensmith

“You have at least six or seven specialists that these families see on a regular basis, and for any one family, that can mean taking as much as six or seven days off,” said JHAC Heart Institute cardiologist and clinic organizer Gul Dadlani, M.D. “And since their kids are probably seen twice a year, you’re really looking at 12-14 days off a year to get to all those appointments. So having disease-specific clinics like this basically allows these families to take one day off and see as many specialists as possible. They still get the same quality of care, and probably better quality of care – because on that day everything is focused toward this specific condition.”

Williams syndrome has received widespread attention over the past three decades from scientists and geneticists and increasingly been in the national spotlight – from a segment on 60 Minutes some 15 years ago to a music camp at Nashville’s Vanderbilt University involving various country music stars to a highly active and helpful parental organization in the Williams Syndrome Association.

Debby and Mikey Johnson with Dr. Dadlani

But parents of newly diagnosed WS babies and children still frequently find themselves searching for answers and specialized medical care. And that is why many have flocked to All Children’s for the clinic started last year by Dr. Dadlani with a helping hand from a WS parent from St. Petersburg, Debby Johnson, whose 20-year-old son, Mikey, was a frequent patient at ACH during his childhood. She proposed the idea of an ACH clinic over the years and it was Dr. Dadlani who recognized the merits and brought it to life.

“I had the idea when Mikey was little,” Debby said. “We lived close to All Children’s and had fine doctors there, so we didn’t really need a clinic ourselves. But if you live a fair distance from your institution, it made a lot of sense to go a hospital and see several doctors in one day. The idea for this was to help families who might live in rural Florida or far from a big hospital.”

“I think just knowing that the specialists they’re seeing have experience with Williams syndrome is a huge relief,” added ACH nurse Heather Wilson, an RN practitioner and the WS Clinic Coordinator.

For Beth Jones, the six-hour drive from Ashford to have her 4-year-old son, Hudson, seen by Dr. Dadlani and others was completely worthwhile. Hudson was diagnosed with WS by his pediatrician at 22 months, after Beth became concerned that he wasn’t meeting developmental milestones. They were sent to a geneticist four hours north at the Children’s Hospital of Alabama in Birmingham and the doctor immediately recognized that Hudson had Williams syndrome..

“We were like, ‘What’s that?’ – we were very upset, because we’d been suspecting something was wrong for months,” Beth recalled. “We got him appointments with a cardiologist and had his eyes and ears checked. But many doctors where we’re from don’t know what Williams syndrome is. I always have to explain what it is every time we go in.”

She learned about the All Children’s WS clinic while perusing the Williams Syndrome Association web site for help, and knew St. Petersburg is where she and Hudson had to come. “I’m glad we found out about this because now I feel we’re getting a thorough check,” she said. “And I feel better, knowing what to do.”

Camila and Dr. Dadlani during lunch break.

Beth, Hudson and other family members savored the chance to mingle with the other parents during a lunch hour in the Children’s Auditorium. In the middle of the room, 7-year-old Camila, who traveled from Miami with mom Iris Linares, playfully checked Dr. Dadlani’s heartbeat with a stethoscope. Another Miami resident, Carmen Jury, expressed her enthusiasm about the help her 9-year-old daughter, Sophia, was receiving.

“It has been a very enlightening because of the education and information that has come from this,” Carmen said. “At each appointment, we’ve been able to learn something new.”

Not far away, Kylie Romero of Jacksonville talked about her difficult initial experience with her baby daughter, Liv. She was diagnosed at birth with a heart murmur and a looseness in her hips, so her doctor ordered a chromosomal test. At the follow-up appointment a month later, the cardiologist came into the room and informed Kylie that Liv had Williams syndrome.

“She was extremely ‘gloom and doom’ about it, and I just said, ‘Well, okay, what is Williams syndrome?’ “ Kylie recounted. “She immediately ticked off things like mental retardation, ‘cocktail personality,’ will never leave home or have to be in assisted living as an adult. We don’t have that cardiologist anymore.”

ACH RN Heather Wilson with baby Liv.

Shaken, she went on the computer to do research and the first one to reach out was Debby Johnson, who told her about how well her son is doing – and about the All Children’s WS clinic. Liv has gotten excellent care at All Children’s since then, and her mother is grateful.

“She’s hit every milestone – all her heart conditions have gone from moderate to mild and the problem with her hips has cleared up,” she said. “Liv is perfectly healthy right now. She goes to a special needs day care and is thriving. She’s s a superstar.”

And one more WS patient shining with the help of All Children’s.

A Special Tampa Bay Rays Visit for a Pair of Teen Baseball Players Healing at All Children’s

2014-06-13T14:34:00.000-04:00

On the seventh floor of All Children’s Hospital, two rooms on separate hallways held a similar story this past week: each connected by baseball and the frustration of boys sidelined from the game they love.

Sitting in a chair connected to an IV machine, 13-year-old Andre James watched television, recovering from a car accident that left him with an injury to his stomach that required surgery. Though he was lucky it wasn’t worse, Andre – a starting shortstop on his travel ball team – was feeling down about being laid up in the hospital while his Iron Pigs squad from Port Charlotte played a big tournament in Georgia.

Not far away, 15-year-old Eric Shrader lay in his bed, getting over surgery to repair a congenital sternum condition but struggling to get over missing the summer season pitching for his team.

And then, several minutes apart, each received the surprise of their lives.

It came in the form of a brief visit from a star player for the Tampa Bay Rays dealing with his own disappointment over a season-ending setback, 24-year-old pitcher Matt Moore.

Moore’s high hopes for the 2014 campaign on the heels of a stellar 17-4 showing last year abruptly ended in April with an injury to his left elbow. It resulted in the operation commonly known as Tommy John surgery and will require a long, grueling road back for Moore to retake the mound sometime in 2015.

He was the perfect person to make a surprise stop – offering perspective, stressing patience and providing words of encouragement to two boys wishing they were back on the diamond.

“Andre, nice to meet you, dude,” said Moore, making the rounds as part of a visit sponsored by Sagicor financial services company, while Rays reliever Brad Boxberger talked to patients on another floor.

Andre looked up in surprise, and his wide eyes conveyed plenty even though he found words hard to come by. He answered with mostly short replies, but fixed a gaze and smile on Moore as the 2013 All-Star carried the conversation with questions and friendly encouragement.

“The good news is you’re still really young and there are a lot more summers to go,” Moore replied when Andre explained he was missing a big tournament. “You look pretty tough – I’m sure you’ll hang in there and this’ll be nothing for you.”

Andre listened intently as Moore switched topics to his own injury. “I got hurt my second game of the year – something in my elbow popped,” he said. “It came out of nowhere and all of a sudden I just felt like something bit my arm. They pretty much had to reconstruct my elbow joint and I’ll be out for a full year. But I’m going to work hard to get back out there, and I know you will, too.”

Moore signed a picture of himself for Andre and posed for some photos – and left him with plenty to tweet his teammates in Georgia about. “It was shocking – I thought, ‘Is that really Matt Moore?’ when he walked in,” the incoming ninth-grader at Sarasota High School said after the visit. “What he said kind of makes me feel better because I know what he’s going through.”

Down another hall, Eric was just as stunned when there was a knock on the door and Moore entered. His parents, Rick and Kandice, were just as excited to see the pitcher as their son – the three used to live in Alabama and watched Moore play for the Rays’ Class AA farm team, the Montgomery Biscuits.

Moore shared his story though Eric knew plenty about it already, including the no-hitter the Rays lefty threw for Montgomery in 2011. “I definitely wish you a speedy recovery – you’re probably a quicker healer than I am,” Moore said with a smile after signing and posing for photos.

“That was awesome,” Eric said after the third-year Rays pitcher left to spread cheer elsewhere on the floor. His mother chimed in, “He was saying, ‘It would be so cool if somebody from the Rays could see me when I was in here.' So this was definitely a memorable day.”

One in which two young ballplayers on the mend got more than they could have imagined.

The Stars Come Out For Taste of Pinellas – and Shine On All Children's Patients, Families, Staff

2014-05-12T15:47:00.000-04:00

They arrived quietly, with none of the fanfare that so often accompanies them as international pop culture icons. Away from the screaming crowds this past Friday and Saturday, they came simply to make gentle, one-to-one contact with a far different audience – grateful patients, parents and staff at All Children’s Hospital.

Hours before belting out "everybody's working for the weekend" at a revamped Taste of Pinellas, the ‘80s rock group Loverboy sang lullabies to a baby in the NICU, led by All Children’s music therapist Kelly Tyrrell.

During one of their many room visits, hard-rocking diva Pat Benatar and guitar-hero husband Neil Giraldo bantered with 16-yer-old Joshua Cox, who proudly revealed he’d achieved the high score on “Hit Me With Your Best Shot” in the video game Guitar Hero. “I have the low score,” quipped Giraldo. Comparing notes with the woman who actually sang the song and the man responsible for the real-life guitar work – priceless.

Dan Aykroyd with baby Veda Venema (He
talked to the parents about playing the father of
a girl named Veda in the 1991 movie My Girl).

And “who you gonna call” to pose for countless photos with excited doctors and nurses and give a lift to sick kids and their families? That, of course, would be Dan Aykroyd, the famed comedian and musician from Saturday Night Live, the Blues Brothers and Ghostbusters, staying well past his allotted time to chat and interact in a down-to-earth manner with anyone in his path.

Aykroyd and actor Jim Belushi, brother of late SNL star and original Blues Brother John Belushi, teamed up to create their own Saturday night live fun with a high-octane, rollicking set to close the successful Taste weekend. After a year’s hiatus, the longtime ACH fundraiser was repackaged and re-introduced under the sponsorship of St. Petersburg-based business and music entrepreneur Bill Edwards to benefit the hospital and the ACH Foundation.

Thousands of spectators and some two-dozen restaurant vendors packed the new waterfront venue at Albert Whitted Park, enjoying a bill highlighted on Friday by Loverboy and Benatar, and KC and the Sunshine Band and the Blues Brothers Saturday.

But the hospital scenes that unfolded away from the bustling Taste were just as big a hit. Late Friday morning, Loverboy lead singer Mike Reno, along with bandmates Ken Sinnaeve and Doug Johnson, listened intently as Tyrrell explained “multimodal” therapy techniques to calm sick newborns – a combination of soothing, repetitive music and touching. “Music is very powerful, very effective and very emotional,” she said. “And part of what we’re doing with the older babies is helping to promote their development. What we want to do is use music as positive stimulation, without over-stimulating them.”

Moments later, Reno sat down in a NICU rocking chair and cradled an infant boy named Rome. Tyrrell proceeded to lead the group in several calming renditions of Twinkle, Twinkle Little Star. She had even worked up a lullaby version of the Canadian group’s signature hit, Working for the Weekend, but baby Rome fidgeted and began to cry, not yet ready for the pop charts. So the veteran rockers switched back to Twinkle, Twinkle, The Itsy Bitsy Spider and the Alphabet song, and the tunes worked like a charm.

Loverboy and Music Therapist Kelly Tyrrell in action

For the Lover Boy members, two of whom have grandkids, it was a magical moment that left them marveling at what they’d just seen.

“It makes me feel better about my job,” said Johnson, smiling.

“That was touching, it really got to me,” added Reno. “I love children and you can see from this the universal impact music has on them. I think it’s almost as important as breathing.”

Late in the afternoon, while Lover Boy got set to take the stage, two familiar faces in the rock world walked into the ACH lobby. Benatar, a four-time Grammy winner, and Giraldo, whose lead guitar work powered his wife’s music throughout her long career as well as many other major acts, couldn’t wait to get the tour under way. They were joined by All Children’s Vice President of Medical Affairs and Chief Safety Office Brigitta Mueller, M.D., and ACH Foundation vice president Sylvia Ameen, hearing about the hospital’s mission and savoring conversations with kids and adults as they toured the PICU.

Neil Giraldo and Pat Benatar making new fans

Benatar and Giraldo, married for 33 years with two grown daughters, asked to see more, and Dr. Mueller obliged by bringing them to the NICU. The singer, a fixture of MTV’s early years with hits like mega-hit Love Is A Battlefield, admired a volunteer rocking a baby to sleep in a dimly lit corner. “That’s what I want to do when I retire,” she said, smiling. “I’m a sucker for infants.”

The couple came away from the visit feeling uplifted, two hours before they would do the same for clamoring fans. “It was amazing,” Benatar said. “And this hospital is just beautiful.”

Saturday afternoon was Aykroyd’s turn to lighten the mood. Wearing a casual white shirt and Victoria Police cap from his native Canada, Aykroyd was a magnet on every corridor he walked – and he happily posed for camera-phone snapshots with any and everyone who asked.

But he was equally interested in hearing from Dr. Jeffrey Jacobs about the cutting-edge heart surgery work done at All Children’s, then seeing the tiny heart patients and their parents in the CVICU, or looking at brain scans in an office with ACH pediatric neurosurgeon Dr. Luis Rodriguez, there with his three sons.

“Future Ghostbusters?” Aykroyd asked playfully.

Down another hallway, a little boy named James waited patiently to catch the past Ghostbuster’s attention. “You’re my biggest fan,” the child proclaimed, innocently inverting his words amid the excitement. “I can’t believe I found you!”

Dan Aykroyd and James

“You found me, man,” a beaming Aykroyd replied.

So did many on the hour-plus tour prior to show time.

“It’s so impressive and this just puts things into total perspective,” he said as the visit wound down. “We see that there are people quietly doing great work, and going unrecognized, every day of their lives.”

But for a little while, a handful of stars shined brightly on them and those they care for, bringing a taste of a special All Children’s weekend to those who needed it most.

Click here to see more photos of the celebrity visits at the hospital.

All Children’s Dialysis Nurses Share Special Bond in Caring for Patients and Families

2014-05-05T08:51:00.001-04:00

You could easily walk past it and never know. Just off the second-floor elevator in All Children’s, tucked away from the usual bustle of the hospital, the quiet world of dialysis nurses, families and patients moves at its own deliberate – and often difficult – daily pace.

The team of four nurses and one office coordinator, guided by department supervisor Cheryl Shepherd, R.N., is a tight-knit group delivering care that is the lifeblood – literally and figuratively – to a population of children who receive dialysis three days a week, for hours on end.

Their home inside the hospital is a spacious, state-of-the-art facility equipped with video games, TVs and even beds to make the time pass more easily – and one of the few dialysis units in the state dedicated solely to pediatric care.

For many teens, the unit is a place they have come since early childhood. For youngsters, even babies, it is where they will spend countless time for years to come for hemodialysis on Mondays, Wednesdays and Fridays – cleaning their blood and doing the work that non-functioning or compromised kidneys no longer can. Many other patients receive dialysis at home (through “peritoneal dialysis”) but they also make regular clinic visits at the hospital.

For the dialysis nurses, meanwhile, it is a 24-7 commitment and a highly personalized form of patient care. They virtually become extensions of a family, developing close relationships with the children they see through the years – helping parents and kids deal with the enormous challenges faced by a life of dialysis or the meticulous care required after a kidney transplant.

“It’s rewarding but sad at times, too,” Shepherd says. “They really get to know the families and kids well. When the families have a question, they call the unit. We do have a nurse on call round-the-clock. They take all the patient calls – and the nurse will call the physician if there’s a problem. We have a significant number of patients on home dialysis. And if any of them are admitted, the nurses come in to assist. Or they trouble-shoot over the phone when there’s a problem with a dialysis machine at home.”

What makes the challenge even harder, both for patients and families and the nurses who care for them, is the often long-term nature of the condition.

“Most of the patients we have are chronic,” Shepherd explains. “They have kidney disease – they’re either born with it or developed it later. Some don’t have kidneys because they were removed; others have kidneys that stopped functioning. Chronic means they are never going to come off dialysis. With acute patients, there is a loss of kidney function that occurs suddenly, usually within a 48-hour period. Acute kidney injury can be reversible with treatment, but a proportion of patients will never regain full renal function, and enter end-stage renal failure requiring lifelong dialysis or a kidney transplant. Our nurses know every situation inside out – and have more than 100 years of experience between the four of them.”

Two of those nurses, Jane Petruccelli and Carolyn Defayette, have been in the dialysis unit the longest time, 20 and 15 years respectively. Peggy Bach has been there for five years, and Kim Suarez has been for four. All of them have experience either in the PICU or CVICU.

“I think the hardest part of the job is getting patients to understand how important adherence is and how damaging some of the non-adherence is to them,” says Petruccelli. “Because you don’t feel bone disease. You don’t feel hypertension. But those things can happen if you don’t stick with the plan. Kids don’t know mortality or consequences. That’s one of the hard parts of our job.”

The nurses talk about a hemodialysis patient who eventually received a long-awaited transplant. But because the teen didn’t stick with the critical regimen of medications and shots for transplant patients, new health issues took hold and landed the youngster back on dialysis.

“We get their labs every month, so it’s a good indication of how they’re doing and how their adherence is,” adds Bach. “And we do this little incentive game, where whoever gets the most improvement gets a prize. I don’t think the kids love it here but they have a pretty good attitude all things considered.”

Adds Defayette: “It becomes tough during their teenage years. Like every other teenager on the planet, they feel like nothing is ever going to happen to them. So a lot of them are under the belief that after a transplant their kidney starts to ‘like’ them – that they don’t need the drugs. It’s very challenging.”

The challenge also applies to children currently undergoing dialysis: making them understand how they need to take their medications to protect their bones and why they need to adhere to a special diet.

“The medications don’t always taste good,” Suarez says. “The kids coming in for dialysis often think that we’re ‘fixing’ them and then they’re on their way. But the diet is crucial and very difficult to follow for anyone – especially for ones on dialysis. No pizza, no French fries, no potatoes, no cheese. Salt increases the fluid in your body, which they already hold onto. Their kidneys don’t work so it limits their salt intake. In addition, phosphorous – in dairy products such as milk and cheese – will actually deteriorate their bones over time.”

Yet with all the hardships faced by patients and families, there is a deep sense of appreciation for the work the dialysis team does and a powerful bonding that takes place. As always, patients are greeted by the dialysis office coordinator, Debbie Thackrey, upon arrival for dialysis treatments or clinic visits. She is a popular fixture who maintains much of the “behind the scenes” activity that is required for the nurses to provide care.

Patients tend to develop “favorite” nurses and rely on them for encouragement and friendship – with an additional layer of support from the Child Life staff member dedicated to the dialysis unit, Holly Ott.

One dialysis patient and his family members have been driving four hours roundtrip three times a week to All Children’s from Orlando. The long trip is worth it, says mother Christina Hudson, because of the wonderful care and top-notch facility at All Children’s. Her 18-year-old son, Donovan, is also a heart transplant patient followed by Dr. Alfred Asante-Korang and the ACH Heart Transplant Program.

“The main reason is for Donovan to be happy and comfortable, and that’s what he is here,” Hudson says. “We were going to switch back to a facility in Orlando, but this is where he’s happy. No matter what we need, there’s always somebody to help. And Child Life helps so much, even with Donovan’s little sister.”

In Donovan’s case, medications needed for his transplant caused his kidneys to fail – a scenario that’s not uncommon. In three years, he will “graduate” out of All Children’s, but for now, this is where he wants to be for his care.

“Throughout the state, there are lots of free-standing dialysis centers but very few that perform pediatric dialysis,” Shepherd says. “Many of these facilities are only for adults and won’t treat children under 15 in most cases. So I think the fact that All Children’s is a pediatric facility, and we provide not just an acute service but an ongoing chronic service, makes a big difference. And the experience and care we offer is first rate.”

“The nurses who work here are an incredibly special breed,” adds Sharon Perlman, M.D., of the USF Morsani College of Medicine nephrology program at All Children's. “Because many of them have come from intensive care backgrounds, they’re used to a high-intensity, high-acuity environment with a lot of rushing around.”

“The environment here is a combination of ICU and long-term care,” Dr. Perlman continues. “In a larger sense, they are almost like surrogate mothers to the kids. These are patients we see sometimes just for months, and sometimes for many years. In addition, the technology here is impressive and they are extremely adept at managing it.”

For instance, the nurses are in charge of maintaining the unit’s large water system so that purified water – vital in the dialysis process – is always available. It’s critical that the machines are always in top shape. They filter the blood, clean it and send it flowing back into the young patients. “It’s constant motion,” Shepherd says.

And that sums up daily life, nestled out of sight, for the nurses of the dialysis unit.

Baby Born During Dash to Hospital Gets Big Assist from All Children’s Emergency Crew

2014-04-23T11:08:00.002-04:00

It was a delivery that two expectant parents from St. Petersburg never could have dreamed of – taking a frantic, unscripted race to the hospital just a tad further than the classic bits from I Love Lucy or The Dick Van Dyke Show. But fortunately, an Emergency Center team from All Children’s scrambled into action early Easter Sunday morning to help ensure a happy ending to a memorable debut episode in the life of baby Elias Alexander Girau.

The pre-dawn hours of April 20 began quietly enough for Juliana “Julie” Fischer-Girau and husband Emilio Girau, and 4-year-old son Shaun Fischer. But then Julie went from feeling no contractions to a series of extremely strong ones, not at all like her first relatively uneventful delivery. Her water hadn’t broken but the couple knew it was time to get moving, and fast.

“I was like, ‘Okay, let’s go!’ ” Julie recalls. So they grabbed Shaun and began the 15-minute mad dash to downtown St. Petersburg at 6:15 a.m. – intended destination, Bayfront Baby Place, housed on the third floor of All Children’s yet with its own special entrance right next door to the ACH Emergency Center.

But the contractions quickly intensified, along with the parents’ pounding pulses, as their Prius reached the I-175 exit off of Interstate I-275, with the hospital in sight. That’s when Julie, seated in the front passenger seat, cried out, ‘Oh my gosh, my water just broke!” Seconds later, as Emilio gunned it down the ramp, she could feel the baby’s head emerging. “Then I felt another contraction,” Julie says, “and he just popped out completely.”

As Emilio made a right turn on Fourth Street, both parents breathed a momentary sigh of relief when they heard the baby cry. They sped up 6^th Avenue South in a surreal frenzy, now intent on getting off the road to deal with the crisis. As it happened, their first possible turn was right into the All Children’s welcome circle.

Emilio leaped out of the driver’s seat and ran to get help in the ACH lobby. Yet in a move worthy of Rob Petrie in the vintage Dick Van Dyke “baby” episode, he failed to put the car in park. And as if things weren’t crazy enough, it began to roll down around the circle toward the street.

Instinctively, Julie pulled the baby from inside her clothing and – with umbilical cord still attached – placed him on the passenger seat. Then she crawled across the gear-shift console into the driver’s seat and hit the brakes before the car could pick up any speed.

Moments later, Emilio returned with All Children’s security guard Kevin Kendall, an employee with fewer than 90 days on the job. It was Kevin who had immediately put out the emergency triage call, and then stood outside Julie’s door re-assuring her while they waited for help. “I didn’t know his name, but he was great,” Julie says. “He really helped calm me down.”

Emilio calmed down as well, after numerous nervous laps pacing around the car. He and Shaun stood watch over the baby on the passenger’s side. That’s when an All Children’s Emergency Center team ran around the corner to handle the chaotic scene unfolding in front of the hospital.

Dr. Wassam Rahman was the emergency department physician who arrived to help, while nightshift paramedic Rich Behers, a military man new to All Children’s, cut the umbilical cord, and nightshift RN Mandy Dix cared for Julie. Without missing a beat, she was placed on a gurney and taken with the baby into the All Children’s EC, where nurses Jen Labato and Christine Schaad delivered the placenta and cared for the emotionally drained mom, and a host of others assisted as well.

“It was a true team effort,” says ACH Executive Director of Nursing and Patient Support Services Susan Byrd, “What began as a triage call really ended up with our people improvising on the spot and doing a wonderful job.”

Amazingly, after all the heart-pounding drama, everyone was doing fine. And soon after, mother and baby were admitted to the Bayfront Baby Place – with a happy big brother and exhausted dad in tow.

“I was just so grateful for the excellent work by everyone who helped us,” Julie says, reflecting on the ordeal. “Everything worked out great in the end. And one thing’s for sure, Elias is going to have a real story to tell for the rest of his life.”

And one that stands proudly alongside Desi, Lucy and Dick – with a helping hand from All Children’s.

Reconnection: A Tale With A Twist for Child Life Month at All Children's Hospital

2014-03-05T09:22:00.000-05:00

Twenty-four years ago, Carla Householder was a frightened, 13-year-old patient at All Children's Hospital, getting ready to have a biopsy performed on a spinal tumor.

Kristin Maier was working as a young specialist in the Child Life Department she now runs at All Children’s.

The two instantly bonded, and their friendship deepened as Carla was soon diagnosed with cancer. She underwent a series of three difficult surgeries, followed by grueling chemotherapy treatment over the next four years.

They talked endlessly, as Kristin encouraged Carla to stay strong and keep fighting.

They made each other laugh with their similarly playful styles – like the day Carla surprised everyone by tossing off her wig with a grin because it made her head too darn hot.

They cried together during the hard times, when uncertainty weighed on Carla’s mind, or when she learned that she likely would never be able to have a baby due to the harsh effects of the cancer and surgeries. And they cried again when Carla finally beat the cancer and parted ways with her dear pal from Child Life.

Once or twice over the years, their paths crossed. But for the most part, they moved on with their own busy lives as one decade rolled into the next.

Then, last Friday, Kristin was walking in a hallway near the patient transfer elevators, reading an email on her cellphone.

It was a moment that could just as easily have slipped into the mundane flow of the day. But at the very same instant, a hospital visitor named Rhonda Householder happened to catch a glimpse of the familiar woman from Child Life who had once been such a godsend to her daughter, Carla.

“Kristin, is that you?!” Rhonda called out. Kristin recognized the voice and beamed as she saw Rhonda approaching her. They shared a warm embrace but there was no time for small talk. Rhonda grabbed Kristin’s hand and led her around the corner. There, sitting in a wheelchair – eight months into a pregnancy that was not supposed to be possible – Carla looked up in disbelief.

“She saw Kristin and just started bawling,” Rhonda recalled. “And then all three of us were bawling.”

Carla had begun to have problems late in her pregnancy and was on her way to Bayfront Baby Place, housed on the third floor of All Children’s, to be induced a month early. The fears she’d felt only seconds earlier disappeared amid the glow of an improbable reunion, created by a simple twist of fate.

"Amazing," Maier reflected.

“How unbelievable that I would run into her on that day, at that moment,” Carla added. “When I saw her, it made me feel like everything was going to be okay.”

And, indeed, it was. On Monday, Carla gave birth to a healthy, beautiful baby girl named Isabelle. Kristin, of course, couldn’t wait to visit her former patient and infant daughter – two lives reconnected by a new one on just another day inside All Children’s.

Child Life Director Kristin Maier, day old Isabelle and new mom Carla Householder.

10 Stories About People, Places and Things That Helped Make All Children's Special in 2013

2013-12-23T11:47:00.000-05:00

As 2013 rolls to a close, this seems like a perfect time to reflect on the individuals, programs and events that helped make All Children’s special throughout the year.

Those stories are told on a regular basis in the feature known as “Faces and Places,” giving ACH employees and the general public a closer look at uplifting aspects of hospital life. Some unfolded in the spotlight in 2013; others took place in less visible corners of the hospital or, in one case, bubbled up from the pages of history with a little-known link to a baseball immortal.

But the common denominator is that all underscored the caring spirit of All Children’s – from the doctors, nurses and staff inside the building to the compassion of the people on the outside, moved to lend a helping hand in an array of powerful ways.

We rang out 2012 with a New Year’s Eve story about a remarkable baby named Sammy Carden, who earned the nickname “Nails” for the toughness he displayed as ACH Heart Institute doctors saved his life during a harrowing surgery.

While still in his mother’s womb, Sammy was diagnosed at ACH with an extremely rare condition: single ventricle with criss-cross atrioventricular connections. Rosie and Craig had no idea what the problem was when they made an appointment to speak with All Children’s cardiologist Kathryn Nardell, M.D. in 2012, reeling from the crushing recommendation by doctors not affiliated with All Children’s that the pregnancy be terminated.

Sammy today at 18 months

But Dr. Nardell spent four hours with the Cardens, reviewing echocardiogram images and drawing pictures of Sammy’s heart and anticipated surgeries. Rosie remembers saying, 'Just give it to me straight: We're going to be prepared and if his quality of life is such that he can't be here, then he can't be here. But I need you to tell me.' And she said, 'We can fix it.' “

That they did in a series of operations performed by Dr. Jeffrey Jacobs and Dr. James Quintessenza, including one to kick off the New Year on Jan. 3, 2013. Sammy came through with flying colors. And, with his G-Tube now removed, he’s become a thriving little boy.

“Sammy is an eating monster,” Rosie said. “He’s running around like a champion and talking, and is really, truly the happiest child I’ve ever met. We’ve been so fortunate.”

So have countless others who have been helped in some manner by the hospital. This year, that included more visits than ever from the Tampa Bay Rays, who signed a sponsorship agreement with ACH. Rookie pitcher Chris Archer even showed up twice on his own (even on the morning of a playoff game), while Bucs rookies made their traditional tour and there was even a surprise drop-in by “Special K” of the Harlem Globetrotters.

Here’s a look at 10 stories, in chronological order, that shine a light on the heart of All Children’s.

Jan. 10

Spider-Man Thrills Patients and Washes a Few Windows

http://facesandplaces.allkids.org/2013/01/spider-man-thrills-patients-and-washes_8009.html

The crew from High Rise Window Cleaning in Clearwater provided patients with a thrill when they showed up to wash windows dressed as Spidey. The unusual sight had kids and parents turning their heads – and even made a splash on the NBC Nightly News.

April 1

The Hospital That Babe Ruth Helped Build

http://facesandplaces.allkids.org/2013/04/the-hospital-that-babe-ruth-helped-build_7093.html

The Sultan of Swat had a well-known soft spot for kids in need, having spent his childhood in a Baltimore orphanage. And back when his New York Yankees spent spring training in St. Petersburg, the Babe made a generous donation to help build the hospital that would one day become All Children’s. The story came to our attention this past spring, and we talked to Ruth's granddaughter, 96-year-old Julia Stevens, about her father’s kind gesture.

April 16

A Hair "Razing" Experience for a Good Cause

http://facesandplaces.allkids.org/2013/04/a-hair-experience-for-good-cause_8581.html

A pair of All Children’s doctors – Gregory Hale, M.D. and Allison Messina, M.D. – parted with their locks one evening with members of the Tampa Bay Lightning to help raise funds to help fight pediatric cancer. The event created a big buzz indeed for pediatric cancer awareness.

May 1

Dr. Colombani: A New Hand That Shapes ACH Leadership, An Old Hand That Saved a U.S. President

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As a senior resident at George Washington Hospital in 1981, Dr. Paul Colombani found himself thrown into currents of history – playing a vital role in helping save the then-president Ronald Reagan as he clung to life following an assassination attempt. Now his leadership as Chair of Pediatric Surgery helps guide All Children’s.

June 4

Music Therapist Kelly Tyrrell Brings a Tuneful Healing Touch to ACH Patients

http://facesandplaces.allkids.org/2013/06/music-therapist-kelly-tyrrell-brings_5822.html

With a wide array of instruments, songs and techniques, Kelly Tyrrell helps patients of all ages – from newborns to late teens – get through hard times with a finely tuned approach to healing through music.

Sept. 10

Jackie Sayegh Duggan: A Life Tragically Taken on 9/11 Enhances Young Lives at All Children’s

http://facesandplaces.allkids.org/2013/09/jackie-sayegh-duggan-life-tragically.html

The Sayegh Family of New York was devastated by the tragic loss of daughter/sister Jackie Sayegh Duggan in the 9/11 attacks on the World Trade Center. But her loving spirit lives on in a multiple ways at All Children’s, thanks to a donation in her family made by the family after putting down roots in St. Petersburg recently.

Sept. 18

Welcome Guests Greet Patients in All Children's Rooms: Towel Animals

http://facesandplaces.allkids.org/2013/09/welcome-guests-greet-patients-in-all.html

The housekeeping staff of All Children’s has been lifting spirits of patients in a unique manner: by mastering the fine art of creating towel animals, and putting them in hospital rooms to brighten the day for children and parents.

Oct. 16

All Children's Homecoming Dance Has All the Right Moves For Kids, Families and Friends

http://facesandplaces.allkids.org/2013/10/all-childrens-homecoming-dance-has-all.html

It was a night to remember for patients – a gala homecoming dance that allowed them to leave behind their pain and uncertainty and just be kids for a change. The event, masterminded by the Child Life Department, drew massive support from vendors in the community to create a magical evening.

Nov. 22

Anthony Napolitano, M.D. – A Leader Who Knows the Heartbeat of All Children’s Hospital

http://facesandplaces.allkids.org/2013/11/anthony-napolitano-md-leader-who-knows.html

He played a key role in the growth of All Children’s Hospital’s neonatal intensive care unit and continues to shape ACH’s course as Chair of the Department of Pediatric Medicine. The journey started for Dr. Napolitano as a New Jersey teen, growing up in a family of first-responders.

Dec. 10

Beads of Courage: A Program that Chronicles the Bravery of Patients Comes to All Children's

http://facesandplaces.allkids.org/2013/12/beads-of-courage-program-that.html

A unique, worldwide program has come to All Children’s, giving kids a tangible way to “tell” the story of what they’ve endured so courageously. It’s a hit with patients, families and staff alike.

Beads of Courage: A Program that Chronicles the Bravery of Patients Comes to All Children's

2013-12-10T13:58:00.000-05:00

The plastic containers arrived two months ago. Each holds all manner of shiny beads, carefully sorted by shape, color and design. And each holds a powerful, personal story to be told now by the patients of All Children’s Hospital.

In their own way, the beads are no different than medals earned by soldiers on the battlefield and displayed proudly on uniforms. Every small object has its own special meaning – standing for an experienced endured, a fight faced, an ordeal overcome.

They are Beads of Courage, a thriving therapeutic program for children in 170 hospitals worldwide, with All Children’s recently joining its ranks. In this holiday season of hope and giving, the beads are playing an especially fitting role: helping lift the spirits of many kids in need of a boost – thanks to the determination of the Child Life Department and generous support of donors.

The program recognizes that on any given day, young patients can face a stressful barrage of tests, shots, procedures, surgeries, pain and uncertainty. But at the same time, those frightening and difficult experiences can become a source of pride and success for children and family members – a way of visually conveying their individual journeys and conquests to anyone they meet.

It is a way of soothing the struggle, knowing that every difficult moment can be rewarded by a corresponding bead. And one by one, strung together in ever-growing strands, the beads convey a powerful, nonverbal tale of bravery on a very real battlefield for each child.

“So many of the kids who come to All Children’s Hospital have life-threatening, chronic illnesses that they deal with day in and day out,” said Child Life director Kristin Maier. “It’s very different than a typical childhood. And Beads of Courage is a way to capture that story and to build their legacy.”

If a child spends a night in the hospital, they get a bead for that. If they have a blood draw, undergo a procedure, or travel a long distance to get to the hospital, they receive a bead signifying each event. Some children wear their strands around their necks, some hang them from their IV poles or drape them across the walls of the room.

“For parents, it’s a way of saying, ‘Look what my child has gone through,’ – it’s very endearing and moving to them,” Maier added. “To children, it’s a sense of pride, like a banner: ‘Look at what I’ve done!’ ”

Due to the expense of the program, it has been initiated incrementally: first with Cystic Fibrosis patients, next with patients dealing with cancer and blood disorders, and then with children on the cardiology floor. But the plan is to eventually make it available to the entire patient population at All Children’s. And judging from the reaction of patients, family members and even the caregivers, that’s no surprise.

Just consider 8-year-old CF patient Scott Hosfield, who sat on his bed in the Pediatric Intensive Care Unit counting his latest haul of beads with Child Life specialist Katie McGinnis. His stay began at All Children’s seven weeks earlier and Scott became the first patient to be enrolled in Beads of Courage at the hospital.

All of his daily respiratory treatments, blood draws from insulin injections, and experiences related to his care had pushed his total over the 800-bead mark on a recent morning – good for a special bead to signify that impressive total. His favorite: the yellow “Minion” bead modeled after the characters in the movie Despicable Me.

“Where we at Mom?” he asks mother Heather Hosfield as the counting continues. 847…848…849.

“I think it has helped him a lot in doing all his treatments and pokes he gets,” she said. “It’s given him something to look forward to for all this pain and suffering he has to go through while he’s here. Before we did a treatment and that was it. So I think it gives it something to say, ‘Oh yes, I get a bead now.’ He has all these beads and everybody tells him how crazy it is that he has this many but that it’s awesome that he does. It gives him something to look forward and it allows me to see him smile.”

There are smiles up and down the hall outside Scott’s door as McGinnis helps him stretch his long strand of beads past a group of admiring nurses and some 20 feet from his room. It was McGinnis who first suggested to Maier and the Child Life staff that the Beads of Courage program would be worth bringing to All Children’s. She had heard of it five years earlier at the annual Child Life conference while working for another hospital. That inspired her to help bring it there, and she immediately saw the impact it had on patients and parents.

One story always stays with her: how a young girl with a brain tumor had collected the longest of bead strands during treatment that spanned 18 months. She had been out of school the entire time, and when she returned McGinnis accompanied her with her seemingly unending length of beads. The girl was reintroduced in the gymnasium before more than 500 classmates, and she used the thousand-plus beads as a tool to tell her story without words.

“She held one strand of the beads – the students and teachers all parted – and I walked through the gymnasium with the other strand and it stretched all the way across to the other end of the gym. There was a collective gasp: teachers were crying, kids were crying. And then everybody just burst into applause. So the moment went from this patient feeling awkward and scared about going back to school to being so proud of all that she had done. Her peers were just amazed and rallied around her.”

McGinnis has observed another kind of magic in Beads of Courage – the bond it reinforces between patients and caregivers, hospital staff and families.

“If a nurse has to come in and do a blood draw, or access their port, that can be something they don’t enjoy doing,” she said. “But with Beads of Courage, it’s really awesome because the nurses and other caregivers are the ones who actually give the patients the beads. … If a nurse has to access a port, she can follow up right after that and give the patient a black bead, which represents a poke, and say, ‘I’m really sorry that I had to poke you, I know that wasn’t fun. I’m so proud of you – you were so brave.’ ”

For 17-year-old Madeline Jones, Beads of Courage has been a constant source of encouragement and pride for eight years. As a child, she was hospitalized in Pittsburgh Children’s Hospital with hypertrophic cardiomyopathy, a condition in which the heart muscle becomes thick and makes it difficult to pump out the blood. Her hospital had instituted the Beads of Courage program and it gave Madeline an immediate boost.

“I thought it was really cool to be able to see everything I went through,” she said. “Sometimes, you think it’s just one blood draw, but it turns into 100. It makes a difference because you can tell people everything you’ve been through and they can also see it at the same time.”

Madeline has been through a lot, indeed. She recently underwent a heart transplant at All Children’s, and a large, blue heart-shaped bead on her long strand prominently signifies that experience. She and her parents, Gina and Keith, were understandably delighted when All Children’s added Beads of Courage, which meant Madeline could continue adding to the collection she’d started in Pittsburgh, and meticulously fill out the accompanying journal that describes each new bead she earns.

“She loves this program, and we love it,” Gina said. “She wears the beads like a badge of honor. I remember when we were up in Pittsburgh, and I’d go past the other rooms, and we would look at their strands and go, ‘Wow – and now we’re one of those wows.”

“It gives the kids something else to focus on,” Keith added. “This distracts them, and they can now focus on something else when they see Child Life representative come, or the nurse come with a fist-full of beads. They get excited.”

The beads are not your run-of-the-mill, crafts store variety, either. They are high-quality, glass-based objects that are both durable and aesthetic. That’s one reason the Beads of Courage is an expensive program to incorporate, it’s why it took roughly two years for the Child Life department to add it to their many patient-friendly endeavors.

“We knew we would have to get philanthropic support for it,” Maier explained. “So we wrote a proposal to the Northeast Exchange Club, the local chapter, and shared the story of how Beads of Courage can make a difference in the lives of our patients. They embraced it and they funded the whole start-up, which was near $20,000.”

The All Children’s Foundation obtained additional sources of donor support, including a generous gift from the Sayegh Family, whose daughter Jackie lost her life in the World Trade Center terrorist attack on Sept. 11, 2001.

“They picked up an additional year of funding, so we’re good for two years,” Maier said. ”The beads are finite, but the procedures and the kids are not. So we’re going to need ongoing funding for the program.”

Meanwhile, Maier and her staff are enlisting volunteers from within the hospital and the community to help create special “Bead Bags” with eye-catching patterns to store and transport each child’s bead collection. (Instructions on how to do so, along with how to obtain an official logo to be sewn onto each bag, can be obtained on http://beadsofcourage.org).

Inside each one, the story of a child’s courageous fight is ready to unfold for the world to see.

Giving Spirit: USFSP Pre-med Student Forms Club To Help Cystic Fibrosis Patients At All Children’s

2013-11-26T17:13:00.000-05:00

Erik Richardson enrolled at the University of South Florida St. Petersburg planning to make business his major. Instead, he has made it his business to help dozens of cystic fibrosis patients at nearby All Children’s Hospital and create a major impact as a senior USFSP pre-med student.

The 25-year-old Floridian by way of New England is the founder and organizer of Pre-Med Pals, a program that allows 16 of his pre-med classmates to volunteer at All Children’s. The focus of the group, which started a year ago, is to spend several hours, two nights per week, with cystic fibrosis patients – playing games, watching TV, helping with homework or just hanging out.

Erik Richardson with fellow USFSP students Keun Young Jo,
Everett Rogers, Stephanie Tominaga and Jordan McBride.

As a busy senior with a demanding school schedule, it would be understandable if Richardson simply buried himself in his biology studies and focused on graduating in May. Far from it. He has made the spirit of giving and volunteerism at All Children’s as much a part of his curriculum as class time.

In his freshman year, Richardson volunteered in the hospital pharmacy. He enjoyed the work and decided to earn his license to become a pharmacy tech, allowing him to work part-time at All Children’s the past two years. Being immersed in the hospital atmosphere – coupled with a profoundly meaningful mission trip to a health clinic in Guatemala – made Richardson know he’d made the right decision to switch his major and focus on a medical career.

But he didn’t stop there. On campus, he formed a USF pre-med club for future physicians to meet and support one another. And at the hospital, he began volunteering in Parent Coffee, the program in which staffers make early-morning rounds to hospital rooms and deliver free coffee and pastries to grateful, bleary-eyed parents.

That’s when it hit him. “Doing Parent Coffee gave me the idea of finding a way for members of my pre-med club to volunteer at the hospital, too,” he said. “When I was working in the Pharmacy IV room, you're completely isolated. But Parent Coffee gave me the chance to see patients I was preparing medication for. I wanted my club members to be able to experience that same kind of one-on-one interaction."

Richardson contacted Ryan Perry, then managing Volunteer Resources, to discuss ways members of his group to offer their services in a useful way. Perry was intrigued and brought the idea up to his wife, Carolyn Perry, RN of the All Children’s infection prevention department.

“She’d been telling him about a group of CF patients and how they were in need of extra volunteers,” Richardson recalled. “So he said, ‘What if we took your club and worked with this group of patients – that’s what we need right now. Is this something you’d be interested in?’ I said, ‘’Yes, definitely.’ ”

Child Life embraced the initiative, playing an integral role in coordinating the visits of the premed volunteers. Meanwhile, the students learned of the extra care that needs to be taken with kids dealing with the chronic disease of the lungs and digestive system.

The thick mucus that clogs the lungs can lead to infections, requiring that patients remain in isolation for as long as two weeks while receiving treatment informally called “tune ups.” As a result, the patients wear protective masks when they leave their rooms and can’t be in the presence of other CF patients – and Pre-Med Pals volunteers had to be trained in isolation techniques, learning the proper times to wear masks, gowns and gloves.

The question of how to make the goodwill visits work still needed to be resolved. The ranks of his premed club had already swelled to some 180 students, far too many to bring in his volunteers at All Children – especially considering the long list of people waiting to volunteer at the hospital already. Richardson addressed the issue by using a software program to create a rotation of students from his pre-med club, filling two open slots every Monday and Thursday (though sometimes more come).

Initially, the USF volunteers participating in Pre-Med Pals numbered seven, but the group has expanded to 20 – and students now have to apply due to competition for limited slots. There’s even talk of bringing the program to other populations of patients. Richardson has moved from a volunteer role to that of coordinator. And members of Child Life work closely with each student, letting them know what patients are in the hospital and need a boost from a visitor.

“Because it’s 6-8 p.m., it’s kind of a transition time – parents may be arriving or not there yet and the kids may be eating dinner,” Richardson explained. “It’s kind of a lonely time of night. So it’s a great time for us to show up. We can spend up to two hours with one patient. We can just chill or play video games with them, or take a walk in the hospital if the nurses are okay that the child leaves the room.”

On a recent evening, 18-year-old Alex Dobbs was one of only a handful of CF patients on 8 South, the unit where CF patients are usually found. They welcomed a visit from USF students Everett Rogers, Keun Young, Jordan McBride and Richardson. Alex has especially enjoyed playing pool during the pre-med visits. On this night, they chatted outside his room and joined him for some TV-watching. Invariably, the pre-med contingent seems to get just as much out of these sessions as the patients.

“When I first heard the program, I thought it sounded like an awesome opportunity,” said Rogers, a Clearwater native. “It sounded like a win-win-win – a win for us that we get to come in and get experience in the hospital working with kids; a win for the kids because they get some entertainment and someone to hang out with; and a win for the hospital because they get volunteers that they need. The Child Life specialists get spread kind of thin. So I see this as a very valuable use of my time.”

Jordan McBride of Indian Shores echoed the sentiment: “You can go home and study when you want to. And you can also come in here and help other people. That’s what we want to do being in the end, so this gives us hands-on experience and a chance to brighten other people’s day.”

Fellow USFSP student Stephanie Tominaga, who moved to the area from Brazil, credits Richardson for making it all happen.

“We owe everything we’re doing here to Erik,” she said. “He’s done so much – not only for our community and the kids here, but for the students as a whole.”

His work is equally appreciated by the hospital. "Erik is a person with a lot of passion and compassion, and his dedication in putting this program together with all the demands on his time is very impressive," said Brittany Nelms, a Volunteer Services Coordinator at ACH. "We really appreciate everything he's done."

Richardson first learned about All Children's when he suffered a serious knee injury while playing for Shorecrest Preparatory School's basketball team as a junior. Though he wound up graduating from high school in Fort Myers, he never forgot about how he'd received such good care from the hospital. And he liked the idea of giving to it when he enrolled at USFSP four years ago.

It made further sense given the medical background of his parents. His mother was an OB/GYN and his father worked as a pharmacist in Tampa. After earning his pharmacy technician license, Richardson spent a year working alongside his dad to learn get hands-on experience before becoming an ACH pharmacy tech two years ago.

All the while, he’s set his sights on another calling at All Children’s – becoming a surgeon. He looked up several ACH surgeons on line to learn about them and see their photo, then introduced himself when he ran into them in the hospital. That led to him shadowing several physicians, hoping to learn more about his primary interest of minimally invasive surgery. Richardson already has a plan for his future. He will be applying to USF’s College of Medicine for 2014 – and hopes to wind up practicing at All Children’s, making a difference in the lives of kids in need.

You might say he’s already off to a great start.

“Faces and Places” is a regular column written by Strategic Communications Editor Dave Scheiber highlighting people, places and things that make All Children’s Hospital special. If you have an idea for a story, please contact writer Dave at ext. (727) 767-2490 or dave.scheiber@allkids.org.

Anthony Napolitano, M.D. – A Leader Who Knows the Heartbeat of All Children’s Hospital

2013-11-22T11:40:00.000-05:00

When Dr. Anthony Napolitano reflects on the path that led him into medicine, he remembers the many times as a teen that his northern New Jersey home would suddenly stir to life in the dead of night.

His father and several brothers were volunteer firemen, and his sister a volunteer ambulance paramedic, in the Bergen County township of Woodcliff Lake. To alert them of trouble, they placed a special Plectron alarm box inside their house that would send out warning beeps and directions whenever they needed to dash off to fight a blaze.

The only problem was that they were heavy sleepers, so they placed the Plectron inside the bedroom of the lightest sleeper of the family, high-school student Tony.

Ultimately, he was the first one with a hand on the pulse of an unfolding problem, rushing to awaken his dad and siblings so they could hurry into action.

“I’d watch my father and my brothers running down the hall, fighting over who was going to drive the car to the firehouse,” he says. “So I sometimes think responding to emergencies was in my blood, because you understand the mentality of it.”

In a way, the experience served as a fitting launching board for the career he would choose. Not only has he been a crucial guiding force for the neonatal and pediatric emergency transport operation at All Children’s, Dr. Napolitano still has a hand on the pulse all manner of pressing issues.

He knows the heartbeat of the hospital like no other – a man who has played a formative role in the growth of All Children’s neonatal intensive care unit over the years as Senior Neonatologist, and the man who now brings his proven leadership and deep connection to the ACH mission to a new role as Chair of the Department of Pediatric Medicine at All Children’s Hospital Johns Hopkins Medicine.

It is a vital position in the new physician-oriented hierarchy created by All Children’s President and Vice Dean Dr. Jonathan Ellen, who simultaneously named Dr. Paul Colombani as Chair of Pediatric Surgery – calling the appointments significant milestones in the academic transformation of the hospital.

The two senior physicians bring complementary assets to the goal of increasing physician involvement in leadership process, beyond both being extraordinary practitioners of their craft. Dr. Colombani possesses a wealth of knowledge of the culture of Johns Hopkins Medicine and experience as a former Children’s Surgeon In-Charge at JHU’s School of Medicine; and Dr. Napolitano knows the doctors, medical staff and inner workings of All Children’s as well as anybody. And his humble, compassionate style and skill have long earned him the respect of his colleagues.

“I’ve tried to figure out what I add, and I think I come with the history of the hospital and the culture,” he says. “I was initially interested in the position but I thought because I was a neonatologist it might be viewed as somewhat limited.”

Then again, Dr. Napolitano’s track record for excellence has been well established for years: a past president of the Florida Society of Neonatology; clinical research that includes persistent pulmonary hypertension in newborns and directing All Children’s participation in the early multicenter trials of nitric oxide therapy for this condition; important work on neonatal abstinence syndrome; forming a NICU Parent Advisory Committee to enhance communication between parents, physicians and staff; and recipient of a slew of honors – including “Attending of the Year” award from All Children’s pediatric residents.

Small wonder that many fellow ACH physicians came to Dr. Napolitano and asked him to apply for the job.

“You know, I’ve been here on the front line, not someone who’s just been in an office,” he says. “I’ve actually been able to see the hospital not only from an intensive care side, but I’ve also worked with the hospitalist program, so I know what’s happening on the floors. I understand what’s happening on transports, and know what is coming in. And I have a sense of how information flows here.”

In his new role, Dr. Napolitano is engaged on many fronts, such as been reaching out to the directors of the nursing divisions and various medical units.

“Everyone is unique, and part of my role is to make sure that I’m communicating Dr. Ellen’s message and direction to the medical staff,” he explains. “But at the same time, I need to make sure that I’m hearing what they have to say – and making sure that he’s hearing it. So the notion of communication, communication, communication is very important.

“What we’re trying to do is get some clarity and transparency. I think the waters here have been a little on the muddy side in the past and we’re trying to clear the water a little bit – and make sure we’re being as up front with people about what’s happening here.”

But there’s another high priority on his task list as well.

“My other role is that I really need to bring the physicians to the table,” he says. “This hospital is going to be much more directed by physicians, as we have a chief who was a physician himself. The anticipation is that physicians need to be more actively involved as leaders, because, really, they are leaders of the programs. And my goal is to facilitate getting them engaged in leadership. As you look at everything that’s going on, nurses can pull these things together but without the physicians, it’s not going to go anywhere. They’re recognizing that we need physician champions, physician leaders. And that’s where the future really is.”

Amid everything else on his plate, Dr. Napolitano continues to serve as medical director for the 24-bed Neonatal Intensive Care Unit at Sarasota Memorial Hospital, through its affiliation with All Children’s. That job has has given him a valuable perspective on ACH as a whole.

“I see our hospital from the outside, as well as the inside, and I think it’s very important because you learn a lot about an institution that way – and you get to listen to others who see it from the outside,” he says. “Sometimes I think you have to get out of the hospital to really see it – and learn what you may need to do differently in interacting with the clinicians.”

Meanwhile, Dr. Napolitano sees a bright future for All Children’s as part of the Johns Hopkins Hospital and Health System.

“We are and were a good children’s hospital,” he says. “I’ve been here since 1988 and watched the faculty grow. And I think if you look at the physicians who are here right now, the quality of care is exceptional. What Johns Hopkins adds is the ability to push the hospital further than where it was. I think we were kind of maxed out. We’d done everything we needed to do. What they bring on top of this is to propel us.”

Most importantly, he says, being connected to Hopkins has given All Children’s the ability to create its own residency program and undertake important research. “The relationship with USF has been a great one, and I’ve enjoyed teaching their residents and their fellows,” he says. “But Johns Hopkins has the expertise that will allow us to take the next step. Aligning with its mission is a vision that All Children’s at one point had. We want to be on top, and that’s the way we’re going to get there.”

The way to All Children’s for Dr. Napolitano was hardly direct. After earning his medical degree at the University of Brussels, he completed his pediatric residency and neonatology fellowship in 1983 at the Medical College of Virginia in Richmond, where he was an attending neonatologist, assistant professor of pediatrics and – true to his roots – oversaw the emergency neonatal transport operation . When he was hired at All Children’s in 1988, Dr. Roberto Sosa, who helped create the hospital’s neonatology program, was aware that Dr. Napolitano had experience in neonatal transport and put him in charge of it at ACH.

“I’ve been involved with it ever since,” he says. “Most physicians don’t stay with it as long as I have. In the early ‘90s, we went from a neonatal team to a neonatal/pediatric team.”

In the process, the program expanded under his watch from one ambulance to three today, along with the ability to transport patients via BayFlite or planes for longer travel.

“It’s close to my heart, because I think it’s a very important service that we provide,” he says. “Any patient who’s sick – whether a newborn or a pediatric patient – we not only have the capabilities of extending within our 17 counties but we also service the greater state of Florida and go out of the country as well. And we’re not just swooping in and picking up; we’re bringing intensive care when we get there. It’s very interesting to see the growth and I’m very proud of it.”

Life in the Neonatal Intensive Care Unit in the old ACH building was also far different when he first arrived. An increasing number of transferred newborns were coming in, so expansion of the small unit was a necessity. Intensive care babies were on the first floor, while “step-down” babies (who were getting better) were moved to the third floor. The average number of newborns gradually grew from 45 to close to 60 by the early 1990s.

“As we started getting into the late 2000s, I think we really started recognizing that space was becoming a problem,” he says. “And the nursery we had was becoming more and more congested.”

Today, in All Children’s state-of-the-art new building, the NICU houses nearly 100 beds, double the size it was when Dr. Napolitano started. When he walks though, he often thinks of how far things have come.

“It’s amazing, knowing where I started and where I am today,” he says. “But I reflect most on the quality that is here. And maybe I’m in this particular position because the quality of the people who have helped me, and given me the opportunity to get to this point. So I’m very humbled by the fact that I’m here because of the physicians around me.

“My challenge now is to make sure that, with them, I can push us to where we need to be.”

It’s a long way from where he once was, rousing his dad and brothers from deep sleep so they could fight a nearby fire. But he’s still in the heat of the action, doing all he can to keep the pulse of All Children’s steady and strong.

"Faces and Places" is a regular column written by Strategic Communications Editor Dave Scheiber highlighting those people, places and things that make All Children's Hospital special. If you have an idea for a story, please contact Dave at 727-767-2490 or dave.scheiber@allkids.org.

All Children's Homecoming Dance Has All the Right Moves For Kids, Families and Friends

2013-10-16T08:56:00.000-04:00

On a crowded dance floor, pulsing with thumping beats and lively moves, the moment unfolded in a scene of unscripted fun and spontaneous unity. A handful of young boys wearing hipster shades began an impromptu conga line and, in a matter of seconds, dozens of other kids joined the locomotive formation, weaving around the room to the blaring tune Come On Ride the Train.

In that magical instant of the first All Children’s Homecoming dance last Saturday night, patients shared much more than the personal battles they have fought so bravely.

They shared a sudden rush of independence from the serious, in some cases life-threatening, conditions that changed their worlds – all while linked hands-to-shoulders with other kids like themselves, gleefully cutting loose on a night that a welcome feeling of normalcy filled the air.

Many were riding a collective train to an exciting, new destination: a homecoming gala, and one that pulled out all the stops along the way.

For patients who missed the chance to attend their own school fall or spring bashes – or who simply felt too nervous or uncomfortable to go – this dance literally came to them, melting away inhibitions and obstacles.

Children who didn’t know one another were pulled to the dance floor to become part of a jumping, gyrating, mass of energy, punctuated at times by the hilarious sight of a young boy showing off his moves with his head covered by a rubber monkey mask.

The festivities transpired in the ECC conference room, completely transformed into a stunning ballroom light in warm shades of blue and purple. Dubbed “An Evening Under the Stars,” the theme was underscored with cardboard stars dangling overhead in honor of the real stars of the show: the kids.

No detail was spared to make it a night extra special. There was the white, storybook carriage and black stretch limo that greeted children and their families as they arrived for the 7-10 p.m. event, providing perfect settings for prom-like photos. And there was the V.I.P. red “carpet” made of colored paper that led the crowd beneath a glittering archway as cameras snapped shots of the scene and video cameras rolled.

“It’s like we have our own paparazzi out there,” exclaimed Tony Colton, a Sarasota 15-year-old who had his final chemotherapy treatment for clear cell sarcoma in his kidneys days earlier, and is now cancer free.

He arrived with Pinellas Park 15-year-old Amber Mohn, who underwent treatment at All Children’s with Tony the past two years. “I went to my homecoming last year and this looks a lot better,” she said, smiling as she gazed at the glitzy sight around her.

“This is just so cool – I’m so glad I came,” added heart transplant patient Shavon Greene, a 19-year-old from St. Petersburg whose life was saved at All Children’s. “I wasn’t sure what to expect. But a carriage and a limo? That took me totally by surprise. And with all those people taking pictures at the red carpet, it feels like Hollywood. It’s amazing.”

More than six months of hospital-wide planning supervised by the Child Life department went into making the evening a reality. The effort was driven by a small army of staffers and a volunteer force of some 100 coordinated by Brittany Nelms. Donors from throughout the Tampa Bay area gladly got into the act, providing formal dance outfits, party food, desserts, makeup and hair styling services, formal portrait shots and a fun photo booth, the lively tunes of D.J. Fresh (well known for spinning hits at Tropicana Field during Rays games), and much more.

As they walked the red carpet, the children turned to the left and into a wonderland of entertainment that far exceeded anything they’d imagined, and the parents turned to the right and into a lounge that allowed them to visit, enjoy their own spread of food and beverages – and watch their children on a big screen having a much-needed blast via a live feed from next door.

It all began as a simple idea that everyone fell in love without hesitation.

“Some of the Child Life staff were sitting at lunch and just brain-storming different ideas of things we could do this year for the patients and families,” said Child Life director Kristin Maier. “They came in my office and said, ‘We have an idea – you’re going think we’re crazy. But we really think it would be great for the kids.’

“They mapped out their vision and I said, ‘Let’s do it. Let’s write a business plan, take it to senior leadership to see if we can get it approved.’ And everybody was for it. We’ve been able to form a great team to bring this whole thing together.”

Long before the dancing began, the team was hard at work on the details of a dream.

•••

Meeting after committee meeting formed a rock-solid foundation for the dance, ensuring everything possible would be done to make it a night to remember.

Maier and Child Life Clinical Coordinator Holly Ott enlisted help from such hospital departments as dietary, safety, nursing, maintenance, risk management, volunteer services, as well as the All Children’s Foundation and the Development Council. The anticipation began a month ago as patients picked out formal outfits that had been donated by community patrons.

Meanwhile, Speech and Hearing Director Therese Montanari and Physical Therapy / Occupational Therapy Director Maggie Reilly focused on the their roles planning the theme and décor. They came up with the “stars” theme, found a prom web site to order the cardboard decorations, and envisioned the inviting color scheme and drapes across the ceiling.

“Maggie and I got together after hearing everybody’s visions and kind of just put it together on a piece of paper,” Montanari said. “And then we’d go back to the group and people would say, ‘Oh, you should have a star balloon when you come in.’ ”

That job fell to Robin Copes, Retail Services Director, who got a crew together to assemble a stunning star balloon archway – tied to together by nylon fishing string and held to the floor by cinder blocks, items provided by her husband. At the same time, Reilly focused on the physical comfort of the patients, deciding that a 15-by-15-foot dance floor should be expanded to a larger size:

“We thought our kids might need a little more space because they might have sensory issues with being too close to one another,” she explained. “And there might be kids in wheelchairs, so there had to be enough room for them to get around.”

Disco balls and strobe lights were also ruled out, in case they might cause problems in patients prone to seizures. And a lounge area away the dance floor was created for any kid needed a break from the stimulation.

Then there was the question of which children to invite. Should it just be acute-care patients? What about rehab patients? “Maggie and I felt that there were kids who come for rehab who probably don’t get to experience their own homecoming,” Montanari said. “Some kids have cerebral palsy or autism. Some are profoundly deaf. So we expanded the list to include both the acute-care kids and the patients in the outpatient rehab population.”

And the female invitees got to enjoy one of the highlights of the day, showing up during the afternoon to have their hair, makeup and nails done by professional cosmetologists who donated their time. A wide-open room of the OCC Building became a bustling beauty spa. A steady stream of girls showed up, many bringing a friend – or a whole group of friends – to get the full advance treatment for the dance.

One such girl was 17-year-old Audra Dick, who drove to the hair and makeup session from Lakeland with good friend Kelsey Smith. Diagnosed with systemic lupus in May, Audra’s life has been turned upside down. An active athlete and high academic achiever at Lakeland High’s Harrison School for the Arts, she put on 35 pounds due to swelling when she became ill. Now she endures grueling rounds of chemotherapy that has left her feeling weakened and often sick to her stomach. Unfortunately, the steroids she takes make her hungry, compounding the nausea.

But Audra wasn’t going to miss this day and couldn’t believe what awaited her. “I honestly didn’t expect anything like this,” she said, moments after having her hair done. “I had no idea. This is awesome.”

Her mother, Laura, explained that Audra didn’t want to go to her own homecoming this year due to her changed appearance: “She said, ‘People will make fun of me,’ but this gives her a safe environment with other kids going through similar experiences.“

Andrew Herbert, a 12-year-old from St. Petersburg, came to the session to accompany his “date” for the dance, 13-year-old cousin Ashlyn. Andrew, on the list for a kidney transplant, was excited about the idea of the dance, but apprehensive about not finding someone to go with, so his cousin stepped in and drove down from Crystal River with her grandmother. “I think he’s really looking forward to it now,” said his mother, Jennifer Smith.

So was 14-year-old Luisa Osorio, who brought her parents, younger sister and a handful of friends. Luisa has been receiving chemo treatments for a brain tumor, forcing her to miss one day of school each week. She has been counting the days to the dance since the invitation arrived in the mail a month ago, and was giddy over having her hair and makeup done professionally.

“This is going to be Luisa’s first big dance,” said her father, Oscar. “It really helps keep her mind off of what she’s going through. It’s wonderful.”

•••

Up on the stage, D.J. Fresh was spinning one dance hit after the next – Rihanna’s Please Don’t Stop the Music, Bruno Mars’ Locked Out of Heaven, Michael Jackson’s Thriller, and Kenny Loggins’ Footloose, the latter a most fitting choice given the feet shuffling and sliding on the parquet squares.

Soon, he yelled to the homecoming crowd, “Are you guys ready? Then let’s go crazy!!”

With that, free-form pandemonium ensued on the dance floor with the Harlem Shake.

D.J. Fresh, a.k.a Doug Hensel, was having as good a time as the kids. When a friend of his, Chrissy McWilliams of the All Children’s Foundation, had asked him if he would volunteer to handle the deejay duties, Hensel gladly accepted.

“I knew it was for a great cause and that it would be blast,” he said as his sound system rocked the room. “It’s their homecoming slash prom slash time to just let loose. It’s tremendous seeing all these happy, smiling faces. You’ve got girls wearing boas, a boy wearing a crazy monkey mask. It’s great.”

The boy in the mask was 11-year-old Jonathan Frederick of New Port Richey, who attended the event in a show of support for 13-year-old sister Cindy, who has been undergoing chemotherapy at All Children’s. While his sister danced with friends, Jonathan explained that he had borrowed the mask from the Fotos-R-Fun photo booth across the room and jumped in among the dancers to add some laughs.

“This night is off the wall,” he said. “I just thought there would be a few tables and punch. But this is a lot more than that!”

In the front of the dance floor, 21-year-old Isabel McKinney, who has Williams Syndrome and comes to ACH for physical therapy, set the pace with some high-energy footwork. Later, she was one of several recruits to call the winning number in raffle drawings for iPod shuffles, Nanos or movie tickets.

The sunglass-wearing, conga-line kids kept the cool dance moves coming all evening long. The star of the group was 12-year-old Aiden Hawk, a longtime member of the All Children’s family who underwent a liver transplant as a baby and fought through many difficult problems. He brought along a posse of pals and old teammates from Northeast Little League in St. Petersburg. One of his friends, Owen Uber, provided an assessment of his longtime buddy: “He’s brave.” And on this night, Aiden was having a blast. “This has been a great experience,” he proclaimed.

For 19-year-old Morgan Lopez of Palm Harbor, the dance was every bit of that and more. She suffers from autoimmune disease that has kept her isolated. She missed all of her high school dances, so Saturday night carried special meaning. “This is all the dances I wasn’t able to go to all wrapped up in one,” she said, seated in a wheelchair. Her escort had to cancel due to a conflict at the last second, so Child Life specialist Katie McGinnis stepped in as her “date” and wheeled Morgan around the dance floor.

“This has meant the world to her,” said her mother, Audrey. “It’s one of the few social events Morgan has been able to look forward to in a very long time.”

She was just one of the countless patients who danced to their heart’s content, forgetting the pain and challenges they face daily, if only for a little while. As the night wound down, D.J. Fresh packed the floor once more with the rousing Journey anthem, Don’t Stop Believing. The kids danced and sang along.

And nearby, Child Life’s Ott, who played a key role in pulling everything together, reflected on the memorable evening.

“It means so much,” she said. “It’s so filling in my heart to see these kids having truly the best time of their life. That’s what we had hoped for, and to see it play out like this is just inspiring and amazing.”

In the background, the dance floor pulsed away to a beat of happiness and hope.

(Check out our photo album for more photos)

On Day of Crucial Playoff Tilt, Rays' Chris Archer Delivers Cheer At All Children's

2013-10-08T16:33:00.001-04:00

Just before 11:30 a.m. Tuesday, a tall and lanky young man with a familiar face arrived at the front entrance of All Children’s Hospital. He could just as easily have been resting up at home following a late-night at the office or focusing his thoughts on a daunting task looming later that evening.

But at this particular moment, there was no other place Tampa Bay Rays rookie pitcher Chris Archer wanted to be than All Children’s.

Never mind that only some 12 hours earlier, the Rays had just completed an exhilarating, must-win playoff comeback against the Boston Red Sox to keep their post-season hopes alive with a 5-4 walk-off victory. Never mind that he would soon be back at Tropicana Field a mile away, changing into his uniform for a critical Game 4 showdown with the Red Sox in the American League Divisional Series.

And never mind that Archer – a cerebral 25-year-old who emerged this season as a key member of the Rays’ rotation – might be called upon to play a pivotal relief role in case Game 4 starter Jeremy Hellickson struggles early against the Sox.

This was one relief appearance he was determined to make.

With that, Archer walked casually into the hospital lobby, ready to take an hour out of his morning to visit children needing a boost as they face far more important battles than baseball.

“This is a better way for me to prepare for my day than any other way,” he said. “Coming here and being uplifted by children who are in tough conditions – and they still have a smile on their face – makes me know that no matter what my condition is, I can still smile through it, too.”

Unlike the vast majority of Rays’ trips to the hospital this season, Archer wasn’t here as part of a scheduled club visit. In fact, he arranged this on his own, escorted only by one member of the Rays public relations staff, Carli Todd, who made sure there were plenty of Chris Archer baseball cards to sign for any child who wanted one.

If you’re keeping score, it was his third visit of 2013 – a tradition the North Carolina native began in June just days after being called up from Triple-A Durham, explaining that he wanted to come by right away in case he was sent back down to the minors and might miss the chance.

There were plenty of smiles during this visit, as Archer made easy conversation with children and parents alike, regardless of whether they recognized him.

Sixth-grader Trysta Ford explained that she didn’t do sports but liked to ride horses. “That’s a sport, right?” he responded encouragingly. In another room, he encountered two little girls, Madison and McKenzie, with their grandmother, and called out, “Who are these beautiful young ladies?”

In another room, a boy lay by himself when Archer stepped in and introduced himself. Then, he knelt beside the child’s bed and talked about how reading a book might help him pass the time. “Just find something that you’re somewhat interested in – they’ll take you to all kinds of different places,” he said, “It’s awesome.”

Then there was 12-year-old Rays fan Kyle Bertalan, who couldn’t have been happier to see who was walking into his room. Archer listened as Kyle, a youth ball pitcher, explained how he’s been told he might not make be able to play baseball professionally. “Well, playing in college or high school can take you a lot of fun places, too,” the Rays star responded. “So it’s not all about being a professional athlete. It’s about enjoying life and new friends and new places. You’ll be a professional at something.”

Five-year-old Da'rell Smith had a hug for the pitcher, who then held up the baseball card of himself and asked who it was. “That’s me,” Da'rell replied. Without missing a beat, Archer asked the little boy to sign it so the big-leaguer could keep it. But he also made sure to sign his own name on another card for Da'rell’s excited mom, Zandra Russ.

Before leaving, he spent time with 16-year-old Linda Corbett, who told him shyly that she didn’t follow baseball. “That’s okay, I just want to say hi,” he said. Archer asked her about college and what interested her, adding, “There’s no need to rush, because honestly, the first thing you choose is probably not the direction you’re going to go in anyway. So be patient. It’ll work out.”

Then the conversation turned to Archer and his team, and hopes that it will all work out this night.

“The whole town is counting on you,” interjected Dr. Paola Dees playfully, several feet away along with Linda’s mother, Patricia Corbett, and aunt Carolyn Anthony.

“The whole town – oooh, pressure,” Archer responded with a smile. “Well, we’re going to do our best,”

“Just win!” added Carolyn with a laugh.

In a way, Archer – and everyone in his path Tuesday – already had.

“Faces and Places” is a regular column written by Strategic Communications Editor Dave Scheiber highlighting those people, places and things that make All Children’s Hospital special. If you have an idea for a story, please contact writer Dave at (727) 767-2490 or dave.scheiber@allkids.org. Video and photos by Mollie Scheiber.

Welcome Guests Greet Patients in All Children's Rooms: Towel Animals

2013-09-18T08:58:00.000-04:00

It’s mid-afternoon on a typical weekday for the Environmental Services staff at All Children’s and the blue-shirted brigade of hospital housekeepers has assembled for a special training session.

Dozens upon dozens of staffers – the folks who go the extra mile to keep patient rooms neat and clean – gather in a hallway outside the department office and await instructions on an initiative of pressing importance.

The material they have come to master rests on several rows of tables and the task looks daunting indeed. But this is no time to throw in the towel – it’s time to make some terrycloth magic with them.

“Welcome everybody to towel animal training class,” shouts housekeeping manager Martha Drew over the din of conversation and laughter.

With that, veteran housekeepers and animal-making aces Stephon Anderson, Cecilia “Cece” Barnett and Aida Esperanza get to work folding and twisting small towels and the assignment suddenly starts to take shape – in the form of swans, turtles, elephants, stingrays and more.

You would normally expect to such family-friendly creations at the foot of a bed at a five-star hotel or in the cabin of a cruise liner. But at All Children’s, they are the distinctive signature of the environmental services staff, a small but uplifting touch that awaits each patient and family as they enter a hospital room.

The practice was done sporadically in the old All Children’s building but has been a regular part of life – bringing surprised smiles to youngsters – here at the new hospital the past three years. Housekeepers learn or brush up on their towel-animal techniques every few months in orientation and refresher training sessions, and the entire department takes the playful process seriously.

The department leaders, who work for ACH through the Sodexo Company, show an instruction video to help the nearly 120 staff members master the requisite skills. They have even tapped experts from Carnival Cruise Lines to conduct teaching demonstrations, and utilize an array of manuals to show their employees myriad styles for making the towel menagerie come to live.

“When we opened the new facility, we really wanted to start things off with a bang, so one day we went around and put a towel animal in each patient room,” said Environmental Services Director Mike Dansberger. “Our administrative director, Anna Stratigos, really encouraged us to get the program rolling.”

The housekeeping staffers have embraced it fully. They have witnessed the power of the towel craft first-hand and know what a difference the cotton creatures can make it a child’s day.

“I remember there was this one little boy who was so sad, because he missed his pet dog,” recalled Barnett “So I learned how to make a towel dog and hand it to him. And he was so happy. It really made me feel good.”

“The kids love it and the parents love it,” added housekeeper Wanda Williams. “Just to see their faces and the excitement and joy it brings them is so special.”

The animals underscore the unusual bond that links the room-cleaning crew with the kids and families with whom they cross paths – whether it’s for a few days or for months at a time.

“We look at this as more than a housekeeping job,” Williams said. “The kids and parents are like our family here. And when they get to know you by your name, it brings even more to your heart.”

To bolster the connection, housekeepers leave personalized calling cards that include their name and a photo of themselves. As an added touch, Anderson likes to tuck his inside a fold of one of his animals so the children and families will know he’s the one personally looking out of them during their stay. Many of his colleagues now do the same.

“At All Children's Hospital, we are all about making sure that when they come, they get better,” he says. “And we make these animals to help them feel more comfortable and more at home."

Housekeeping manager Drew has seen how deeply her staff’s enthusiasm for the towel animals has taken hold: “It’s really exciting. They’ll look at how Stephon was thinking outside the box and made an elephant. And then they’ll say, ‘Okay, I’m going to try to make one, too. Lo and behold, everybody is making different versions of it.”

She regards it as part of a larger sense of pride her people take in preparing the patient rooms:

“People generally don’t think about the amount of hard work it takes for one of our housekeepers to get a room cleaned and ready. When they finish the room, not only is it disinfected properly, it has what we call a picture perfect setup. So in every room, just like a hotel, everything is in the same place in each room.”

And every room has a cushy critter ready to welcome a child in need of a morale boost.

“I was really surprised to see it – I’d been in the emergency room and when I was brought into my room, there it was: an elephant,” said a patient named Stacey, who has been in and out of All Children’s the past decade. “I remember thinking, ‘Oh that’s so cool!’ It was nice to see something different in the room. And it makes you happy.”

She has since been greeted by a swan and turtle, among other fabric friends.

“People who come into the room are amazed to see them in a hospital,” she added. “Everyone wants to know how they’re made and who does it.”

All in a day’s work for the folks in blue.

Jackie Sayegh Duggan: A Life Tragically Taken on 9/11 Enhances Young Lives at All Children’s

2013-09-10T16:08:00.000-04:00

Memories from the national nightmare of 9/11 always reawaken the lingering anguish that the Sayegh family has learned to live with. The inevitable wave of news coverage reminds parents George and Diana of how much they lost that morning 12 years ago – a smile that once lit up rooms, an exuberant presence that enriched their lives and those of so many others, a daughter named Jackie.

Jackie Sayegh Duggan - Courtesy of the Sayegh Family

She worked as Banquet Manager at Windows on the World, perched atop the North Tower of the World Trade Center with its breathtaking vistas of New York City and beyond.

Always punctual, she had gone in to work little earlier than usual that morning to oversee a client’s conference. The Brooklyn native loved her job, even though she soon planned to move to Atlanta and join her newlywed husband, who had taken a new position with Hilton Hotels.

Then came the horrific events that remain all too vivid and personal for the Sayegh (pronounced Sayer) family – two commandeered U.S. flights crashing into and toppling the Twin Towers, a country and world forever changed, and a beloved daughter, sister and friend forever gone along with nearly 3,000 victims that day in the rubble of Ground Zero.

But born from the tragedy and heartache was a spirit of hope and love in Jackie’s memory. And the uplifting ripple effect has found its way, after all these years and quite by accident, to All Children’s Hospital.

Jackie Sayegh Duggan never knew of All Children’s when she died at 34. Yet now her legacy is a tangible part of it, and will soon help countless young patients deal with their fears and uncertainty in the face of the unknown – and provide staff with new methods to enhance care.

Here is the story of a special life that ended far too early that terrible day in New York, and how that life now lives on with new meaning some 1,200 miles south – in ways neither Jackie nor her family could ever have imagined.

•••

Until Sept. 11, 2001, Jackie’s world was one of happiness, fulfillment and boundless potential. She was always known as a do-er in her family, the one who organized everyone and everything. As the oldest grandchild on both sides of her parents’ families, as well as the only grand-daughter, she was the one her brother and cousins always looked up to. “Jackie was the go-to child among all the other kids,” recalls her mom. “She was like the mother hen.”

Her parents nicknamed her “The Gap” after the store – not because she liked shopping there but because she had a knack for bridging gaps, relating to everyone with ease no matter their age or generation.

“She was also the family historian,” adds her father. “She would absorb everything and would always be the one to answer anybody’s questions.”

Jackie made friends easily and had many of them. “If she liked you, oh my God, she would do anything for you,” says Diana. She majored in fashion and marketing at Marist College in Poughkeepsie, N.Y. After working for a short time in that field, Jackie decided to change course. She and G.A. opened a little restaurant in a Brooklyn neighborhood with deep Sayegh family roots.

In no time, they turned it into a popular 50-seat, special occasion establishment called Kalio, named after their maternal grandmother. G.A., a graduate of the French Culinary Institute in Manhattan, served as head chef, while Jackie poured her energy and talent into the venture to make a success.

But she longed to make a mark on the bigger stage of corporate hospitality. And when she was offered a job in special events at the Hilton Hotel in New York City, she knew the moment had come to take a new career step. The move had an added benefit. That’s where she met a colleague named Mitchell Duggan. They fell in love, but corporate policy would have prevented them from each staying on the job if they married. So when her department head moved on to Windows on the World, she gladly accepted his offer to join him there.

She and Mitchell married in a small ceremony with no reception in March of 2000. Life was filled with possibilities, opportunity – and unexpected change. Though Jackie loved her work at Windows, her husband was soon offered a dream management position in Atlanta. They knew it was too much to pass up, and prepared for a new life together in the South.

The couple decided that Jackie would leave Windows before the busy Christmas holiday season and join Mitchell in Georgia as soon as she could. But they still looked forward to returning to New York in March 2002, when they planned to pull out all the stops for the wedding reception they never had, a much-anticipated celebration with family and friends from all over the country and abroad.

They spent hours talking on the phone about their plans Monday night, Sept. 10. On Tuesday morning, she e-mailed him to say “Good morning, I love you.”

It was the last message they would share.

•••

The days, weeks and months that followed were a surreal, searingly painful blur. “In a four-block area of where we lived in Brooklyn, six people died,” G.A. recollects. “You kept hearing about someone else you knew who had been killed, and there were months of memorial masses.”

George and Diana’s home was a revolving door of family, friends and well-wishers. Their dining room table was filled with piles of food that appeared every day. Bouquets of flowers filled their home and cascaded down the front steps. They did their best to get through each day, still awash in grief.

A mass of celebration, attended by hundreds, was offered in the chapel of Visitation Academy, Jackie’s elementary school. Outside, two parked NYFD fire trucks served as honor guards. Emotions and tributes flowed, followed days later by some amazing news. The family received a call from Visitation – members of the academy community had spontaneously contributed $12,000 in Jackie’s name.

The gesture inspired the Sayegh family to form a foundation. Within three months, they earned 501(c)3 status, appointed a board of directors and officially unveiled the Jackie Sayegh Duggan Charitable Foundation in 2002. Soon after, a cocktail reception, was organized as the first official fundraiser held in her honor.

“We thought there would be about 60 people,” says Diana. “But more than 400 people walked through the door – family, friends, survivors. Many were strangers to us but obviously not to Jackie. It was standing-room-only complete with news cameras. People kept coming up to us all eager to tell us their Jackie story. We couldn’t believe it.”

Nor could they believe how quickly the donations poured in. The foundation went on to hold six annual fundraisers around the Sept. 11th anniversary date, each with live and silent auctions and a party atmosphere that would have made Jackie proud. Those efforts raised more than $600,000 for the foundation – all beginning with the original $12,000. The family gave that back to Visitation Academy to fund a much-desired music room.

Jackie loved kids and wanted to have many of her own. So everyone agreed it would only be natural that the focus of her foundation would be “taking care of children.” That made the decision easy on how to begin dispersing their charitable funds: children would be the ones to benefit.

They reached out to The Churchill School and Center in Manhattan for children with learning disabilities and established “Jackie’s Kids” – an after-school, remedial reading program for students in need. They gave money in support of the Freedom Alliance, which provided assistance to children of armed forces members serving in combat. They created a scholarship at her Brooklyn high school, Fontbonne Academy, and funded a Read-a-Thon in Rockland County.

For several years, Diana brought 10 mothers of needy children to a Long Island Old Navy and enabled them to shop for clothes before Christmas. They contributed to The Juvenile Diabetes Research Foundation and United Cerebral Palsy, purchased new computers and furniture for the Sayville Library children’s program and paid tuition for siblings at St. Philips Academy in Newark N.J. – helping 17 worthy causes in all.

In addition to the foundation’s work, Jackie is remembered close to home in another way. An open space in Sayville, Long Island, where the Sayegh cousins once rode bikes and flew kites, has become a community meditation garden now bearing her name. It is a serene, beautiful spot that is maintained both by the family and total strangers who bring flowers and plants to honor Jackie and the lives of others who died on 9/11.

•••

There was one more place where Jackie’s roots would take hold.

George and Diana had spent nearly 30 years vacationing and visiting with long-time friends in northeast St. Petersburg. In the years since Jackie’s death, coming to Florida gave them a temporary respite from the constant reminders of their loss. Last year, they made a big decision and got a place of their own in downtown St. Pete. They were staying temporarily in an upper condo of the Signature building, when G.A. and his wife, Debbie, flew to town to check on them – and make sure they weren’t making an emotional decision to leave New York City.

But a funny thing happened. The younger Sayegh couple fell in love with St. Petersburg on the first day. They were struck by the comfortable feel of the area, the number of businesses sprouting up and the lack of congestion. G.A. and Debbie could tell it was the place they wanted to raise their daughter, Sophia, and open a restaurant (which they have since done with a Cuban food eatery on Central Avenue called Bodega). They immediately made plans to move south.

One day during the visit, they were all on the Signature balcony, and G.A. pointed to a nearby building. The bulk of the money in Jackie’s foundation had been given away, but there was still enough to make an impact somewhere – if only they could find the right fit.

“You know, Mom, that’s All Children’s Hospital,” he recalls saying. “How about All Children’s?”

Diana knew next to nothing about the hospital, but that’s not why she balked at G.A.’s suggestion.

“Selfishly at that point, I wanted to leave the tragedy back there in New York and bring only the happy time with Jackie with us,” she says, her voice quavering. “I thought, ‘I don’t want to bring it here.’ Of course, that wasn’t possible.”

In the days that followed, she thought of Jackie’s favorite cousin’s newborn son whose life was saved at Children’s Hospital of Philadelphia. Suddenly she knew: All Children’s would be the perfect place to bring Jackie’s legacy of caring and love. As she often did for solace, she found herself having a “talk” with her daughter: “I said, ‘You know Jackie, you could have gotten my attention in a less dramatic way!”

Things fell into place quickly. The family decided to make a gift of $100,000 to All Children’s but weren’t sure how to proceed. So G.A. and Debbie contacted ACH board member Tom Mahaffey and his wife Shannon, whose daughter was a classmate of Sophia.

From left: George Sayegh, Sylvia Ameen, Debbie Sayegh,
Sophia, Diana Sayegh, Kristin Maier and G.A.Sayegh

The Mahaffeys, in turn, reached out to Sylvia Ameen, Vice President of the All Children’s Hospital Foundation. She arranged to take them on a tour of the hospital and, working with Child Life Director Kristin Maier, proposed a way to put the donation to use.

The money will serve multiple purposes. It will go toward the purchase of five special “Medikin” dolls that allow patients to better understand what’s happening to them, and even practice medical procedures. “You can put ports, IVs, central lines, shunts, catheters and more in them,” Maier explains. “The kids can actually put fluid and ‘blood’ in an out – they’re very interactive. It helps kids become experts of their own medical care.”

The gift will be used in conjunction with other donor contributions to fund a “Beads of Courage” program. The beads initiative awards children in three populations at the hospital – cardiovascular, cystic fibrosis and oncolology – various colored beads for different procedures and experiences they have. Kids can wear the beads on a necklace as a way of telling their personal story. The program will officially launch in October and more patient populations will be added as the program unfolds.

In addition, the donation will allow Child Life to buy five elaborate calming devices called Vecta Distraction Stations. The enclosed, five-foot-tall devices include fiber-optic lights, bubble tubes, built-in music and aroma-therapy. The stations help ease anxiety for children, especially those with sensory issues, facing frightening procedures.

The contribution will fund an endowment to bring leading experts in the field of Child Life to All Children’s. The goal is to help the department continue growing, learning cutting-edge techniques and providing top-tier care to patients. If that weren’t enough, the family’s donation will also sponsor the birthday program, allowing every child who has a birthday while in the hospital to receive a gift card to one of several popular stores.

“Their philanthropic gesture has turned such a tragic loss into a positive,” Ameen says. “The family has found a beautiful and meaningful way to keep Jackie’s memory alive – combining her inspiring legacy with a mission that would have been close to her heart: helping children.”

Maier is thrilled with the purchases the gift will allow, and echoes the excitement over the educational component. The endowment money will, for instance, allow Child Life members to attend a national conference and learn about new tools available to patients and families, and different ways of delivering services.

“Education is the key to progressing and staying current, but it’s often one of the things in an operating budget we have to cut,” she says. “So to know that our department can continue to get educated and always be at the top of its game is the best thing you could ask for.”

Jackie's brother, G.A. Sayegh, and his mother, Diana

Though they found the hospital by chance, the Sayeghs have no doubt this is where they were meant to spend the final dollars of Jackie’s Charitable Foundation, a contribution marked with a special plaque that hangs in Child Life.

“I think it’s a fitting end to what our foundation has tried to do,” Diana says. “I feel very confident that Jackie would be very happy with where this money is going – and that makes us very happy.”

As another 9/11 anniversary nears, the private pain of George and Diana and their family again becomes public. This year, however, they know that Jackie’s giving spirit will soon permeate All Children’s, bringing comfort to the children inside and keeping the memory of the child they lost – and of all those who died that day – burning forever strong.

Rays Players Make the Rounds at All Children's Amid Soaring Spirits and A Few Surprises

2013-08-20T11:19:00.000-04:00

Luke Scott knows a thing or two about duck hunting and the great outdoors. So the Tampa Bay Rays designated hitter couldn’t contain his smile last week after asking a little boy at All Children’s Hospital if he’d watched the Rays game the night before on TV.

“No,” said the child. “I was watching Duck Dynasty.”

Scott nodded approvingly at the honest reply, even if it meant the boy hadn’t seen Tampa Bay’s dramatic, walk-off win over Seattle that put the team back on track in the heat of a division race.

“Duck Dynasty? Yeah, I like that show, too,” the slugger said of the reality TV hit. “Hunting and fishing – that’s my type of lifestyle.”

Scott proceeded to sign a custom baseball card for the young patient and wished him well, then moved down the long hall to meet more kids – part of an hour-long tour last week that also featured hard-throwing relief pitcher Jake McGee and scene-stealing, sea-dog mascot Raymond, who flopped on floors, commandeered nursing stations and comically climbed into hospital beds.

In another room, the ballplayer met up with 17-year-old patient Dylan Hastings. Scott looked at Dylan’s shock of brown hair and suggested it might have the makings of No. 30’s modified-“Rayhawk” – minus the ‘80s rat-tail he’s worn lately.

“You let your hair grow just a little bit more, you’ll have the right look,” he said, drawing laughs from the teen’s girlfriend and his mother, Jennifer, thrilled to pose for a photo with Scott. “He’s my favorite!” she said.

Dylan was part of a nice double-play. One day earlier, he was visited by three umpires in town to work the Rays-Mariners series – snagging a Build-A-Bear stuffed animal for his girlfriend and a squeezable baseball for himself. Now he had a big-leaguer in his room making friendly chit-chat, along with Raymond’s bed-side antics for the second straight day.

“It was perfect,” Dylan said. “It makes me feel better actually.”

One floor below, McGee was making similar contact with kids and families, eventually joined by Raymond as well. In one particular room, they happened upon a familiar face – that of longtime Rays radio broadcaster Andy Freed, whose 3-year-old son Casey was recovering from neurosurgery. The moment McGee and Raymond walked through the door, Casey’s face lit up, while the expressions of his parents reflected emotion and gratitude over the surprise visit.

“This whole thing has been pretty intense,” Freed said. “You know, I’ve done visits over the years to hospitals. But to be on this end of it, I’ve never had this experience. Now I see it means so much more than I ever realized. It’s absolutely magic. He’s been in so much pain the last few days, and now seeing him smile, it’s hard to hold back crying.”

Just another day on the floors of All Children’s, where magic takes all shapes – sometimes in the form of a big-league ballplayer, a furry blue mascot or the simple smile of a sick child.

Kids Revel in Western Week Summer Camp at All Children's

2013-08-15T16:24:00.000-04:00

Cowboy Gordie was hard at work on a recent morning at All Children’s Hospital, twirling a rope above his head in trick patterns just the way he did when he worked with TV’s original Lone Ranger, Clayton Moore, and on other vintage Hollywood sets.

But in truth, the octogenarian saddle man with the amazing lasso moves was the one getting roped in – by a roomful of young patients on the final day of a week-long, western summer camp.

While many children enjoy all kinds of outdoor camps over the break, that’s not always possible for the kids hospitalized at All Children’s. So with a new school year looming on the horizon, the Child Life Department once again swung into action to stage five days of summer-camp fun for hospital-bound children last week.

All corners of the Children’s Auditorium were decked out western style – complete with sepia-toned wanted posters (featuring the faces of the Child Life staff), areas for crafts and games, a small mechanical pony that little kids could pet and climb on, a replica of a stockade, special isolated tables for patients whose conditions put them at risk for infections, and popular country music tunes filling the air. The event was broadcast from a closed-circuit system into hospital rooms, so any child who couldn’t attend still could watch on TV.

As an added touch, there was even a “miner’s cart” that was brought to the hospital rooms each day for those who needed to stay in bed. Patients were told that miners in the auditorium had collected gold for them (well, gold-painted rocks sifted from inside a big box of sand). Room-bound kids could then trade the gold for special prizes, ensuring that everyone was involved.

“The kids here don’t get to go to summer camp, so instead we bring summer camp to them.”

said Child Life Director Kristin Maier. “They’ve been fully engaged and all the activities have been carefully planned by our staff. We sat down a few months ago to start planning camp week – we just have a lot of creative people who envisioned this.”

The theme of one session was “campfire day,” with music therapist Kelly Tyrrell leading everyone in camp songs and kids making s’mores. There was a day that featured a trail mix bar and creating popsicle-stick craft frames to hold photos taken of the kids, and another where patients turned bendable foam pool noodles into horses decorated with plastic googly eyes and felt for hair.

Friday’s ho-down and roping show was organized by Child Life intern Rayna Tanis as her special project of the summer. “It’s very exciting,” she said. “I’m just so happy that it all came together – we have the music, the entertainment, the trick ropers. And they’re so great.”

Gordie Peer, who drove in from Okeechobee, was joined by a professional roper he trained himself, Mike Wooldridge of Naples. The two performers – located in an Internet search by Child Life Specialist Leah Frohnerath – shared the spotlight, treating the packed audience to numerous classic roping and twirling tricks. Their moves immediately caught the attention of 7-year-old Gianna. When Peer asked for a volunteer, she stood up out of her wheelchair and walked to the front of the room, where she managed to get the rope spinning with a helping hand from the old cowboy.

“The cowboys made me want to learn,” she said with a smile.

And the cowboys learned something themselves from the crowd of kids, many dealing with one form of adversity or another.

“They’re so special and we need to do special things for them,” said Wooldridge.

Creating an indoor western summer camp, capped off with some fancy rope twirling, did the trick just fine.

Music Sweet Music Program Aids Speech Therapy At All Children's Hospital

2013-07-30T09:00:00.000-04:00

A proud graduating class with music therapist Jennifer Miller

Pomp and Circumstance plays on a boom box as a handful of smiling youngsters make their way, one by one, to the front of the room in the Speech Language and Feeding Department at All Children’s Hospital.

The kids certainly have no idea that they are moving to the regal refrain of the traditional graduation song. But they know it’s a special moment filled with more of the music they have been immersed in over the previous four weeks.

They are receiving diplomas for completing their work in Music Sweet Music, an outpatient program started 12 years ago by a former hospital volunteer, Ted Wagner. He and his wife Nuala have been fixtures on the local performance scene for the past two decades, appearing regularly in the lounge at the St. Petersburg Yacht Club. But by day, Wagner has poured himself passionately into his musical outreach to children who suffer from speech and communicative impairments.

Unlike the music therapy program for hospitalized patients being treated at All Children’s, his endeavor is designed to help little ones who come to Child Development and Rehabilitation Center several mornings a week to work on language skills – with music serving as a bridge.

"Through volunteering, I kind of saw a need for therapy beyond people’s hospital stays,” Wagner says. “A lot of the kids really responded well to music therapy but wouldn’t receive therapy after the hospital stay. I found out that there was really no organization in St. Petersburg that provided ongoing music therapy or instruments – and that’s really why I started it.”

A talented sax player by trade, Wagner knew he didn’t possess the therapeutic training or knowledge required to teach the children. So after founding the organization, he hired board certified music therapists to run the classes – donating his time and energy to supervise the program as a labor of love. He and Nuala handle the fundraising initiatives and have obtained grants to keep Music Sweet Music going. “The only people paid in this organization are the therapists and my administrative assistant,” he adds. “This is all volunteer work for me.”

One therapist, Jennifer Miller, has been working with the children at a recent session at ACH. The kids, ranging in age from 2 to 5, bang on drums, keep time with shakers, and jump and sing to songs they have learned in class. Soon she asks a little girl named Baela to pick a song for the group. “Can we do Wheels on the Bus?” she asks. Miller obliges, strumming the chords on a special electronic instrument that simulates the sound of a guitar, and the kids all sing along enthusiastically.

The scene brings a smile to the face of Therese Montanari, All Children’s Speech and Hearing Director in the Speech-Language Pathology Department. She brought Wagner’s group on board several years ago with the move to a new, bigger development and rehabilitation building, augmenting the hospital’s excellent inpatient music therapy program.

“You hope that when they try to sing along, it’s a vocalization,” Montanari says. “If they’re having trouble talking with two-word phrases or single words, they may string some vocalizations together to try to sing. We have seen a nice correlation between getting their intonation and rhythm – that’s important when you’re having a conversation. And with a certified music therapist, she has the background to help the children.”

With more than 400 children in the speech-language program, there isn’t room for all of them in the music class. But it’s an appealing option for parents who really want it for their child (or, in some cases, children).

“A lot of times, it’s based on when they’re coming to speech and language therapy,” Montanari says. “If they’re coming on the days we have music class, it works out great. And it’s nice for us because we may be working with a child’s mouth to make a W – or wuh wuh sound – and then they come right into music class and sing Old McDonald. They go through all the different farm animals and use those muscles for something functional like singing.”

Baela certainly has benefitted, says her father, Matthew Comfort.

“It’s been excellent,” he says. “She loves to sing songs now, whereas before she would kind of clap her hands but not really sing – trying to say the words. The songs definitely reinforce what she’s learning. Wheels on the Bus, Twinkle Twinkle Little Star – it’s all enunciating.”

Applause for a new Music Sweet Music grad

When the big moment arrives, Wagner tells the children they are a “Music Sweet Music Shining Star” and they line up to receive their diplomas. As the familiar graduation theme plays, each name is called to the sound of cheers and applause. “I can’t tell you enough how proud I am of all of you, and what a great job you did with the music,” Wagner says.

With that, snacks are served and sound of sweet music fills the air.

"Faces and Places" is a regular column written by Strategic Communications Editor Dave Scheiber highlighting those people, places and things that make All Children's Hospital special. If you have an idea for a story, please contact Dave at 727-767-2490 or dave.scheiber@allkids.org.

A Day in The Life: Behind the Scenes of the 30th Annual All Children’s Telethon

2013-06-05T10:16:00.002-04:00

The moment arrived with a wave of raucous applause and cheers that sent decibels and emotions soaring off the charts Sunday evening. It was a wild scene that blended the fever pitch of a Super Bowl victory with an election-night headquarters celebration - all in the name of children.

A whopping check presented by Walmart for $986,058 pushed the total over the top just before 6:30 p.m. Sunday. An instant later, the final tally hit the big tote board for the 30th annual All Children's Telethon - a grand total of $4,154,917. And prolonged pandemonium erupted on the set inside the Education & Conference Center, hosted by the familiar News Channel 8 anchor crew of Gayle Sierens, Keith Cate, Steve Jerve and, in a surprise return after six years - on horseback, no less - Bob Hite.

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It was the culmination of months upon months of painstaking work from all corners of All Children's.

There was Stephanie Hall, the Children's Miracle Network Hospital Program Director at All Children's - marking her 25th year nurturing relationships with all of the Telethon's corporate and civic donors. There was the Emmy-winning trio of veteran Telethon producer Ann Miller, who tirelessly scripted the touching content and endless details of the show; creative services director Mike Sexton, whose colorful graphics and stirring Telethon theme song helped give the event added heart; and videographer Bill Greene, who filmed and edited the poignant pre-taped segments aired throughout the program.

And there were so many others, from ACH board members to department directors to staffers and volunteers working side by side for a common cause.

"It doesn't matter what your position or title is at the hospital with your day job," says Darrell Lee, Strategic Communications and Interactive Services Director, overseeing the Web and social media efforts from start to finish. "When it comes to the Telethon, everyone assumes a role and gets the job done. It is an amazing event."

In this case, the combined efforts resulted in the fourth-highest Telethon contribution total ever, particularly noteworthy since there was no Taste of Pinellas this year to serve as a simultaneous fundraising catalyst.

The day was filled with distinctive sights that began to unfold well before showtime and lasted until sign-off at 6:30 p.m. Highlights ranged from the return of 28-year-old former patient Tommy Duckworth, who spent the first six years of his life in the hospital to a nostalgic, late-afternoon reunion of three Telethon titans.

Former All Children's president J. Dennis Sexton, former ACH Marketing and Foundation executive Joel Momberg and longtime show host and Channel 8 sports anchor, Dick Crippen reminisced, while rocking babies together in the Neonatal Intensive Care Unit in a nod to the show's roots.

It was a Telethon to remember. And here's a look at some of the behind-the-scenes - and in-front-of-the-camera - happenings that combined to make it that way.

* * *

By 6:30 a.m., the ECC has sprung to life. WFLA-Ch. 8's anchor team is busy getting set for the telecast - Gayle Guyardo sits in front of a boom, applying makeup. Rod Carter and Leigh Spann stand nearby, smiling and staying loose. In another room, the first group of volunteers who'll work the banks of phones receive final instructions. The busy pace and bright lights provide a sharp contrast to the calm, subdued hues only minutes away on the hospital's sixth floor - in the heart of the NICU.

This is where Channel 8 weekend morning anchor Yolanda Fernandez is preparing for her first live segment of the day, accompanied by a mobile production crew directed by WFLA veteran Phil Hill. Fernandez sits and chats with Amanda Fish and David Delmotte, the parents of premature boys Logan and Aden, born seven weeks premature but doing well enough to make their TV debut.

Having time to talk 15-20 minutes prior to the segment accomplishes several things. It gives Fernandez a chance to get the gist of the family's story - beyond the note cards she has been given - and it allows the parents to relax a bit in front of two TV cameras before Hill signals that the segment is live.

"That pacifier is bigger than he is," Fernandez says, smiling, as she engages the parents in conversation. The signals begin to come: "Four minutes to go ... two minutes to go ... one minute." Just then, Aden begins to cry. "Oh, you're going to start getting fussy now?" jokes his father.

At 7:37 a.m., Carter introduces the spot from the ECC set and Fernandez shifts right into gear: "Hi, good morning Rod, we're in the Neonatal Intensive Care Unit, and I'm with the proud parents of these beautiful twin boys," she begins. The three-minute portion comes off without a hitch. The boys cooperate by not crying at all, and the parents tell Fernandez how grateful they are for the care their babies have received. "The communication is amazing," says David. "They make sure you know everything that's going on and why they're doing stuff." Adds Amanda: "It's like a second home."

Back in the ECC, the phones are already ringing steadily.

* * *

Next up for Fernandez, Hill and Co., a signature touch provided by the staff of All Children's Environmental Services department: towel animals.

A room on the seventh floor has been decked out with all manner of little white towel critters, an art perfected and practiced by the many folks who clean the hospital rooms on a daily basis. There are bunnies, dogs, ducks, swans and turtles - even little rays in honor of the major league team in town.

EVS workers are all trained in making the cotton-based creations - a sight guests are more accustomed to seeing in cruise cabins or high-end hotel rooms than in a hospital. But the animals are a way of brightening spirits of young patients, and the staff takes great pride in going the extra terry-cloth mile to do just that.

Martha Drew, housekeeping manager, had a hard time securing an empty room for the segment because the hospital was nearly full the night before. But Room 728 opened up, so that's where the video crew heads now. Soon, two of Drew's experts join Fernandez to give her an on-air lesson - Cecilia "Cece" Barnett and Stephon Anderson - and explain the significance the animals have in the grand scheme.

"The animals are for the kids," Stephon says. "At All Children's Hospital, we are all about making sure that when they come, they get better. And we make these animals to help them feel more comfortable when they come and make them feel more at home."

Cece tells a story of a little boy staying in one of her rooms. "He was sad because he missed his dog," she explains. Cece promptly reached for several towels and, minutes later, brought a smile to the child's face by presenting him with his very own towel dog.

* * *

So it goes throughout the day. Fernandez takes viewers on a wide range of stories inside the hospital. She spends time with 16-year-old Celina Cook, recovering from a type of leukemia called AML that demands a harsher treatment plan. Celina, wearing a protective mask, talks about playing intense games of UNO with other teens - and even some of the nurses - in the game room. "I just feel very safe here because of all the supervision, always seeing how you're doing and checking in with you," she says. "And always seeing what they can do better."

A segment with two Guatemalan parents, Stephanie and Marco, and their premature baby boy showcases the All Children's International Program. Stephanie was the first mother in the program to come to All Children's and have her baby delivered at the hospital - at only 28 weeks - rather than giving birth overseas and then transporting the infant. Both parents express their gratitude for the life-saving care their baby Marco has received. Dr. Roberto Sosa joined the parents, stressing that Marco was past the most difficult time now. "Now he's eating well, and breathing by himself, so we're very happy," he says.

Then comes a trip to the Simulation Lab and an interview with Sim Center and Clinical Research Director Tina Spagnola, a tour of the Emergency Center's pediatric transport units, and a visit with pediatric emergency physician Dr. Patrick Mularoni, minutes after finishing a shift.

"How busy are Sundays here - what's your typical day like?" Ferdandez asks.

"We've been real busy today," Dr. Mularoni responds. "I started at 6 a.m. and all day we've had a trickle of children coming in to be cared for. One of the things that's unique about our hospital is because we're a pediatric hospital, because we take care of some of the sickest kids in the area, we've seen kids from all over the place. Earlier today, I had a kid fly in on a helicopter from Cape Coral. I've seen sick children from St. Petersburg who require cancer treatment, where they have to come here for care as well. And I just got finished sewing up the chin of a little girl who cut it on the side of a swimming pool. We're busy because of the specialized care we provide."

Still, it's adorable 5-year-old Mae Parker who threatens to steal the show. Mae was adopted by her parents in a Chinese orphanage and underwent her first heart surgery in Beijing. Last Wednesday, she had an open-heart procedure at All Children's and came through with flying colors.

By Friday, she was talking up a storm and enjoying a tea party with family. And two days later, she was beaming at a pair of WFLA TV cameras, enjoying another tea party with mom Lauren and grandmother Joyce by her side. "She's doing fabulous - you'd never know she had heart surgery," Lauren says, adding that the medical staff fell in love with Mae. Though she spoke no English 15 months ago, Mae talks plenty now - and even handles the segment sign-off like a pro, following Fernandez' lead and proclaiming, "Back to you Gayle!"

In fact, another showstopper will soon take center stage. Former Channel 8 anchor Hite, now retired and living the ranch life in Colorado, had saddled up during the Saturday night sneak peek of the Telethon on WFLA and started "riding" to St. Petersburg. The bit culminates with video of the popular ex-newsman on horseback as he nears All Children's - and then dismounts to enter the show in chaps and dusty cowboy boots.

It is an emotional experience for Hite, seeing many of his former co-workers for the first time in a half-dozen years since his retirement. But his eyes filled with tears, and his voice broke, as he spoke on air of his three grandchildren, all of whom have received care at All Children's.

"The Telethon has been an annual tear event for me since the beginning," Hite says in a quiet moment off the set. "Long before I had two children, much less grandchildren, you were still moved by these kids and their families - and the devotion of their parents and this hospital staff. You know, I tear up pretty easy when kids are involved - and old friends. I wouldn't have missed this for the world."

Meanwhile, being part of the Telethon holds special significance for a newcomer to the event: Jenine Rabin, Executive Vice President of the All Children's Foundation. She grew up in nearby Seminole watching Channel 8 anchor Sierens host the Telethon each year, and remembers urging her father to listen to the WFLA team and call in a pledge.

Now, joined by her two young daughters, Verity and Chance, Rabin is in the Telethon spotlight herself as the event builds toward its big finish. She stands beside Sierens, teaming up to raise money in a live interview about role of the Foundation and the vital importance of the Telethon.

"Today is one way of giving support, but we work with donors all the time who have an interest in doing something specific," Rabin says. "And we're happy to work with them to make their dream come true."

Many dreams do thanks to the contributions that pour in during the Telethon and throughout the year.

One of them is vividly depicted on screen - the story of a miracle baby and his inspiring return as a thriving adult.

* * *

For sheer power, it's hard to top the appearance of Tommy Duckworth.

Tommy was born in November 1984, with much of his intestines on the outside of his belly. All Children's surgeons had to remove part of his intestines and then carefully place the rest back inside his abdomen. He spent his early childhood at All Children's, celebrating his first five Christmases here, even learning to walk by pulling a specially modified IV pole around the hospital walls.

Fittingly, Tommy is interviewed by Crippen, who had rocked him as a fragile baby in the NICU 29 years earlier. He works today as a nutritionist at St. Anthony's and gives credit to All Children's for making his journey possible.

"I'm just living life and enjoying life, and am blessed to be here," he says. "And I'm blessed to come back and share another 30 years with All Children's."

Crippen quips that he may not be around for that, then looks into the camera and says, "This is a guy that you helped. Those of you who have contributed through the years to All Children's Hospital, you gave him, literally, life."

* * *

The Telethon tour de force takes place in the kind of rocking chairs that Tommy once was comforted in.

It's where the Three ACH Amigos - Sexton, Momberg and Crippen - closed the live programming from the hospital shortly before 5:30 p.m.

Momberg was the man with the idea of launching the Telethon, and did so with the blessing and help of All Children's president, Sexton. Crippen was the host who always opened the show with Sexton, rocking babies in the NICU.

"This was always my favorite part of the show, but I never got to do it until now," says Momberg, as the three enter the NICU and take their seats. "I was always jealous of those guys!"

When the cameras begin to roll, Crippen acts as emcee as Sexton and Momberg talk about how far the event has come through the years.

Sexton: "One of the great things that this has brought is a recognition around the whole region of the wonderful things we were doing way, way back - and now All Children's Hospital they have is on an international scale as far as the skills of the doctors and nurses and the research that's being done. This is what we dreamed about. People say, 'You didn't dream this much.' Well, we did. It really, fortunately, has turned out to be everything we wanted it be."

Momberg: "It's been unbelievable. Of course, this is what it's all about - the babies. We were talking earlier about 30 years, and coming back, and seeing the families and young adults who are now just phenomenal. It's just such a great feeling to come back. It's like giving birth to the Telethon - you put it together, and then you watch your child develop. Now, it's a mature Telethon. It's just beautiful."

* * *

Then comes a moment not in the script. As the segment ends, Momberg and Sexton prepare to head back to the ECC for the big Telethon finish. That's when Sexton notices a familiar woman at the front desk of the NICU checking in about her grandson - a tiny preemie inside the NICU.

Dennis Sexton and Joel Momberg visit the Morris baby in the NICU

By sheer coincidence, she sat in front of him and his wife at church that same morning. The woman was wearing the official 2013 Telethon T-shirt, so the Sextons introduced themselves and learned her story. She is Kelly Demsey and had just flown in from Delaware after her daughter Amy Morris, a Ft. Myers resident, gave birth prematurely at the hospital. It was especially troubling since the daughter had two other pregnancies that ended with the babies not surviving.

Kelly explained that she was having people sign her T-shirt, and would donate a dollar during the Telethon for every signature she collected. The Sextons wished her well and soon headed for All Children's.

Now, some eight hours later, she has crossed paths again - and the former ACH president immediately recognizes her.

He calls out to her, and notices she has collected a dozen or so signatures on her shirt by now. To help her cause, he reaches for his wallet and hands her a twenty-dollar bill. Momberg does the same. She hugs them both, then asks if they would like to see her grandson inside the NICU.

Returning to the ECC, with all its mounting excitement, can wait 10 more minutes. The two men, long the heart and soul of All Children's, follow the grandmother to an incubator. It holds newborn Roman Isaac Demsey Morris, who has a new chance at life thanks to the hospital they helped so much with the creation of the Telethon 30 years earlier.

Sexton and Momberg smile at the baby, the only sound coming from a beeping monitor nearby. The quiet room is a far cry from the excitement sweeping through the ECC several blocks away, where the tote board will soon jump another million dollars and trigger a thunderous ovation.

Away from the cameras, amid the dim lights of the nursery, the scene is as priceless as any on this day, with the hearts of a little NICU baby and the biggest of Telethons pulsing to a shared beat.

Music Therapist Kelly Tyrrell Brings a Tuneful Healing Touch to ACH Patients

2013-06-04T10:17:00.002-04:00

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You might see her walking the All Children's hallways with a guitar in hand, or pulling a cart packed with tambourines, shakers and two large binders of lyric and chord sheets. They are the tools of the trade for music therapist Kelly Tyrrell, whose world moves to a constantly shifting beat as she helps add harmony to the lives of newborns to teens.

The countless tunes she sings and strums are an oasis for patients and parents alike, lifting spirits and bringing smiles in times of pain and uncertainty.

But there is much more to Tyrrell's job than making music, even though she does that beautifully and with an engaging and varied style that seems to establish an instant connection with kids and families.

Her work demands a knowledge of psychology, physiology and science as well as music. And it requires not only a college degree but, increasingly, additional specialized certification, such as the kind Tyrrell earned so she can help the fragile infants from ACH's Neonatal Intensive Care unit.

On a recent afternoon, you could find her in the dim lights of the NICU, where she stands by a high-tech incubator holding a baby born with a drug addiction - a condition known as NAS, short for Neonatal Abstinence Syndrome.

With firm but gentle strokes, she uses several fingers to massage the month-old girl's forehead and back while quietly singing the chorus of "You Are My Sunshine." Several feet away, the girl's parents watch attentively, marveling at the impact of the soothing technique - known as Multi-Modal Stimulation - Tyrrell is utilizing.

"Please don't take my sunshine away," she and the parents intone ever so softly. They repeat the song again and again as the child, who had been crying fitfully minutes earlier, settles into a peaceful sleep.

Some 30 minutes later, Tyrrell enters a room on another floor where a 10-year-old girl with a genetic condition and serious respiratory infection lies in her bed, hooked to tubes and unable to speak. But she connects with her eyes, which convey a spark of enjoyment as Tyrrell picks up her guitar and launches into Smash Mouth's "All Star."

Soon after, she sits on a multi-colored mat in another hospital room across from 2-year-old Bradley, a little boy with Down syndrome who is thoroughly enjoying Tyrrell's version of "The Wheels on the Bus." He picks up plastic shakers and tambourines she has brought along and keeps time to the rousing rendition.

It's only a small portion of a typical day for Tyrrell, and a big reason she loves the job ¬- even if most people don't realize what goes into being an effective music therapist.

"I will never get tired of the question, 'Well, what do you do?' because there's so much that goes into it - and very few people fully understand what it really is," she says. "I absolutely love what I do, so I enjoy telling people about it. My basic explanation is this: music therapy is using music to reach non-musical goals.

"We use music more than we teach it, and the beauty of it all is that you can tailor it to be whatever you want it to be in order to help a patient."

***

It may look like she's performing as she belts out rock or pop chart-toppers to older ACH patients or hams it up singing children's classics to toddlers, but she most definitely is not.

The truth is, Tyrrell has never been comfortable in the spotlight. "I love interacting with people but I hate performing," she explains. "If I'm in a performance situation, I get nervous and my voice shakes - it's nerve-wracking. But if I'm singing and playing music to make somebody feel better, it's a totally different story. I'll rap, sing classical music or do a country song by Hank Williams or Johnny Cash. If I want a child to get silly, I get silly. If I want a child to be serious, then I get serious, too - whatever I need to be. I love the therapeutic part of it. I'm cut out to do what I do."

Tyrrell draws from a rich musical family background growing up outside of Albany. Her father plays guitar and her mother the piano, and both sing. Her older brother lives in Nashville and does music, and two younger siblings also sing and play instruments. "It was a perfect training ground growing up - I learned a lot about music from my parents, and then my schooling reinforced and fine-tuned things," she says.

Tyrrell's journey to All Children's took a roundabout route, with a pivotal course correction at the collegiate level. Initially, she wanted to go get an undergraduate degree in recording and producing - working behind the scenes. But after attending a community college to take music business classes, she concluded the music biz wasn't her cup of tea and decided to pursue a major in Music Education at Appalachian State University in Boone, N.C.

Her goal was to become a teacher, and the notion of music therapy hadn't even occurred to her. But prior to starting fall classes at Appalachian State, a friend coaxed her into taking one last community college course: intro to music therapy.

"I fell in love with it," she says.

Tyrrell also happened to read an article about a music therapist who worked with a woman whose ability to speak was lost due to a stroke. Yet the therapist was able to get her to sing in their sessions, since that is controlled by a different part of the brain than the area that that impacts language. Through music therapy, the woman's speech eventually returned.

"I looked at that and said, 'That's exactly what I want to do," she recalls. "I want to use music to make people feel better. So when I arrived at Appalachian State, the first thing I did was visit my advisor and ask, 'Hey, you don't have a music therapy program, do you?' "

The advisor promptly informed her eager student that the school was known for having one of the best music therapy programs in the country. Tyrrell switched majors on the spot and, three years later, earned her degree. Along the way, she completed six "practicums" - including hands-on work with fifth graders with intellectual disabilities and older adults with Alzheimer's - as well as a full, six-month internship at a medical center in Fort Pierce, splitting her time between adult patients and babies in the NICU.

"I had a fantastic internship supervisor who modeled a bunch of situations that I needed to handle and would process with me after my sessions with a patient," Tyrrell says. "She'd say, 'Tell me three things you did well and something you want to improve on next time.' And if I had a really bad session, she'd say, 'Tell me three things you did well and something you want to improve on next time.' My education was fantastic."

Before receiving her music therapy certification, Tyrrell had to pass a board exam that measured her expertise in music theory, guitar and piano playing, sightreading, aural skills and voice - but also questions overlapping nursing, anatomy and psychology. "As music therapists, we're going to have to have some basic knowledge of the body and, say, where certain muscles are," she says. "And there's a mental health component, too. It's a hard test."

In 2011, Tyrrell completed her Florida music therapy certification and immediately went about getting her specialized NICU certification to broaden her range. It was an easy decision, given how much she had enjoyed working with the tiny NICU babies during her internship. She earned her additional credentials through Florida State University in a rigorous weekend training program held in Orlando, but her first job had nothing to do with NICU work.

She was hired as a music therapist in a private pediatric practice in Sarasota. Most of the children she worked with had life-limiting illnesses or autism, and a few had cancer. And many of them had received care at All Children's. One of her co-workers was a child life specialist who was an acquaintance of All Children's Child Life Director Kristin Maier.

She just happened to be looking for a new music therapist.

***

Tyrrell applied last fall, got called back for a second interview and then was brought in for a hands-on "audition" of sorts. She donned a protective mask and gown and showed up at a hospital room to sing and interact with a sick child.

As it turns out, the patient's parents were also in the room, along with a Child Life specialist on hand to observe the session - and they wore masks and gowns, too. In minutes, she and the entire group were busy singing a lively kids tune. Just then, six more people in masks and gowns entered the room.

Tyrrell assumed they were friends or family members and promptly involved them in singing along - getting them to say their names during a "goodbye" song. That's when she learned they were all doctors, who had stopped by to see the patient - unaware Tyrrell would be there.

"They were on a special team and were just having a blast singing and dancing around," she recalls. "Of all the times for me to have my 'hands-on' session - I couldn't have planned it better if I'd tried."

Maier had no doubt she had the right person for the job.

"When we were recruiting for the job, we were looking for somebody who would be able to grow the position in the NICU, so we wanted somebody with the NICU certification - and we probably had six applicants who met the on-paper criteria," Maier says. "But what I loved about Kelly is I would describe her as the full package.

"She has the ability to communicate and build relationships. She's got that real gentle soul, where she connects with the infants and the families. She's very versatile and can work very effectively with little infants all the way up through our adolescents. And she's well-researched; she knows what's current in the research and can speak to what is music therapy scientifically.

"But she doesn't even need that, because her actions speak louder than any words. And she has just done wonders at the bedside."

Tyrrell, who started in November, couldn't be happier in the job, which is funded by St. Petersburg businessman and music industry executive Bill Edwards. She bases out of an office on the 7th floor, just outside the hematology and oncology wing. The small room is filled with guitars, ukuleles, percussion instruments and more. In addition to her songbooks, which she constantly fills with new requests from patients, a trusty iPad filled with song lyrics and chords also comes in handy during patient sessions.

"It has been better than I could have imagined - I absolutely love it," she says. "I love the team and the patients. Even if we're having a rough day, I like that it's hospital policy for us to smile and make eye contact, because it totally changes the atmosphere. And if there's something I think a patient needs, I have yet to have somebody say, 'No, we can't do that.' "

Tyrrell builds her daily schedule on recommendations from Child Life or nurses, who recommend patients for her to see - and develops her own list as well making the rounds. Her day can change at the drop of a hat when a new call or email comes in, suggesting that she stop by a new patient's room or teach worried parents Multi-Modal Stimulation techniques.

Recently she visited a teenage girl who had attempted suicide. The girl didn't want to talk to anyone, but Tyrrell learned that she wrote poems to express how sad or angry she was. "I went in and we basically began putting her lyrics to songs, then recorded them and put them on a CD. She went from 'I don't really know who you are and I don't care' to 'this is great!' Right as we were doing music, she posted on Facebook something like, 'music therapy is awesome!' Experiences like that are so fantastic."

Scanning her schedule, Tyrrell sees it's time for a visit with a 12-year-old named Michelle, who lost her hair from chemotherapy treatments in advance of a bone marrow transplant. Michelle has been feeling ill all day but perks up when Tyrrell, wearing a mask and gown, arrives with her music cart.

She has worked up Jason Mraz's song," I Won't Give Up," at Michelle's request. And as Tyrrell strums the melody, the young girl sits up on her bed. Oblivious to the maze of tubes and monitors connected to her body, she sings the melody in a soft voice.

"I won't give up on us. Even if the skies get rough...."

She is suddenly lost in the hopeful song, gently accompanied by Tyrrell as another healing moment of music unfolds on the floors of All Children's.

Dr. Colombani: A New Hand That Shapes ACH Leadership, An Old Hand That Saved a U.S. President

2013-05-16T10:17:00.002-04:00

Dr. Paul Colombani

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The man who quietly walks All Children's surgical floors these days is more than a valued mentor to physicians, more than a doctor who enjoys getting out of his office to mingle and observe, more than an embodiment of new hospital leadership on a vital mission for the future.

Dr. Paul Colombani, named Chair of Pediatric Surgery in January, is a key addition to the hospital whose leadership ability was forged under fire in a dramatic and unforgettable page from the past.

Thirty-two years ago, on what began as a mundane day for a young chief resident at George Washington University Hospital, he helped save the life of the most powerful person on the planet.

In fact, Dr. Colombani played a pivotal role in pulling President Ronald Reagan and White House press secretary James Brady out of danger on that tumultuous Monday afternoon of March 30, 1981 in the nation's capital.

The fates of the 40th U.S. president and his press secretary - frantically rushed to George Washington's emergency room, clinging to life with gunshot wounds from a would-be assassin - depended on the skill and calm nerves of the then-29-year-old chief surgical resident and a talented medical team.

Only moments earlier, Dr. Colombani had been sitting with several residents upstairs in the call room, going over medical articles in preparation for their weekly journal club meeting at 5 p.m. He had actually been on call the previous seven days and had not been home since Friday. So he was looking forward to going home after the journal club meeting for a special steak dinner his wife had been planning.

The prospect of a hot meal at home suddenly vanished in the heat of an unfolding national crisis.

Yet there was no time to think about the extreme gravity of the situation, how the flow of world events now hinged on each move he and his colleagues would make.

"The way we saw it," reflects Dr. Colombani, "we were just doing our jobs. "

With their hands firmly placed in history.
. . .

It was 2:27 p.m. when a deranged man, John Hinckley Jr., stepped from the shadows outside the Washington Hilton Hotel and opened fire on the President and his entourage.

In an era when nonstop cable news was in its infancy and social media was non-existent, news of the assassination attempt had yet to reach Dr. Colombani and his associates in the call room in the harrowing minutes after the shootings. Instead, their reading session and discussion was interrupted by a standard trauma call over the loudspeakers.

He and fellow chief resident Dr. David Gens, alternating his on-call shift each week with Dr. Colombani, initially dispatched a senior resident they supervised to see what was going on. When they didn't hear back from him, and the trauma call continued, Dr. Gens dialed the emergency room.

Almost instantly, he overheard a clerk on the other line requesting four units of uncross-matched O negative blood - the kind used for transfusion in emergency situations, since it lessens the chances of an adverse reaction to the transfusion.

"As soon as Dave said they were asking for uncross-matched blood, I said, 'We better get down there - there's something going on,' " Dr. Colombani recalls. "We go running down this long corridor though radiology. And you can see there's a limousine out front with the presidential seal on it."

They turned the corner and ran directly into a Secret Service agent with an Uzi submachine gun who stopped them and demanded to know what they were doing. "We're the trauma team," Dr. Colombani responded.
And then they entered a room with two beds. Brady was stretched out on Bed 2, his vital signs indicating he was in the process of dying from the bullet wound to the front of his head, exposing his brain matter.

Working frantically, Dr. Colombani managed to stabilize Brady within 10 minutes, and 25 minutes later had him in the operating room - speed that helped save the secretary's life.

Next he turned his attention to Bed 1, where Dr. Gens, as the on-call chief, had been working on the President. Dr. Colombani will never forget the image.

"He looked like he was going to die," he says. "He had this gray look to him and the gray means you're both hypoxic and hypovolemic. You're in shock and you're not oxygenating well. And he had no breath sounds on the left side. He kept saying, 'I'm not shot, I'm not shot. I'm not shot.' "

Every second and minute counted as the two doctors worked furiously to save the president, who was suffering from a collapsed lung and profuse internal bleeding in his left chest. The wound was caused by a knife-like slash from a flattened, deflected bullet that had gone unnoticed by the President and others as he was rushed from the scene.

All the while, the young doctors were guided by a simple tenet from their training as they hurriedly worked to pull the rapidly deteriorating Commander-in-Chief out of his tailspin.

"At George Washington, we saw the poorest of the poor," Dr. Colombani says. "I saw vagrants who came in with trauma but I also took care of Justices of the Supreme Court, U.S. Senators and diplomats. Our philosophy was that everyone got the same care. If you start making adjustments because of this person or that, you start making mistakes. So we always followed the same rules and the protocols for every patient we treated."

The story of what happened next - and in the days that followed -- is only part of a distinguished career that Dr. Colombani has enjoyed over the past 30-plus years practicing medicine.

He has followed a path to a leadership position at Johns Hopkins University School of Medicine as Children's Surgeon-in-Charge, status as a fellow of the American College of Surgeons, serving as a consultant and committee member for many national organizations and now All Children's.

It is here that Dr. Colombani plays an integral role in nurturing physician involvement in the hospital's leadership process. All Children's President and Vice Dean Jonathan Ellen announced his appointment as Chair of Pediatric Surgery in conjunction with that of Dr. Anthony Napolitano as Chair of Pediatric Medicine, hailing the two moves as important milestones in the academic transformation of the hospital.

"I'm thrilled with the appointment of our two chairs and look forward to their leadership in the growth of clinical programs, research and education and the full integration of these three arms of our mission," Dr. Ellen said in unveiling the appointments six months ago.

For Dr. Colombani, coming to St. Petersburg was a natural step in his medical journey.
. . .
For the record, he traveled to Tampa Bay in 2011 as part of the original JHM delegation that met with top All Children's officials about the details of merging the two institutions. He never imagined at the time that he would wind up playing an integral role in ACH's future, but the timing for a change was just right.

After 32 years at Johns Hopkins, 22 of them as division chief, the veteran surgeon was immediately intrigued when Dr. Ellen later called to discuss the position of Interim Chair of Pediatric Surgery.

"I'd done most of what I could do there and maybe it was time for new blood," he reflected. "I felt I could do more for the Johns Hopkins health system and the mission here at All Children's than in Baltimore. So when Dr. Ellen explained that the hospital had never had a chair of surgery, and asked if I'd serve on an interim basis, I said yes."

His decision was rooted in several factors. For one thing, he believed the ACH surgeons needed a mentor to help them develop clinical research, teaching programs and fellowship programs, while also helping them further develop specialized areas of expertise. Yet he also recognized a higher goal.

"The reason I said yes is that I think All Children's Hospital potentially could be a leader in the Southeast, if not the nation, in children's care," he said. "It has all the qualities to do that. Great clinical people. Great facility. And everyone is focused on children."

Dr. Colombani has already made strides in furthering the research and academic mission that has become a driving force of All Children's in its new role within Hopkins. The flagship component is a new educational model to help develop future physician leaders as medical care moves to population health - a preventative approach that explores the biological aspects of a patient's condition against a backdrop of social, environmental, psychological and genetic factors.

"I've been working with the general pediatric surgeons primarily," he explains. "And what we've done is initiate a fellowship in pediatric surgery, and we have an international fellow (Jamir Arlikar). We've made our application to the residency review committee of the ACGME (Accreditation Council for Graduate Medical Education) for a formal U.S.-sanctioned training program in pediatric surgery. We've been site-visited and we'll know in June whether we have approval or not. If we don't get it, they'll tell us what we need to work on and we should be able to get it within the year."

In addition, a new research fellow in pediatric surgery (Sandra Farach) will start work on clinical research in July. Dr. Colombani has brought several clinical trials to ACH from Hopkins and hopes to take some clinical trials from St. Petersburg to Baltimore. He travels between the two hospital campuses frequently, lately every other week, and recruitment for his replacement at Hopkins will begin this summer.

Meanwhile, Dr. Colombani, who also serves as ACH's chief patient safety officer, is excited by the strong leadership foundation already in place at the hospital.

"Historically, the physicians who worked here were in private practice and weren't really part of the decision-making process," he says. "The idea with Jonathan Ellen becoming Vice Dean and President is to have a physician at the helm for the first time in the history of the institution - then bring in Tony Napolitano and myself as physician leaders. There are plenty of people who have been working here, both in private practice and as All Children's specialty physicians, who have been leaders. But they've not really been given a chance to shine. I think making a conversion to a physician-led organization is going to take time, but it will develop leaders."

Dr. Colombani enjoys working with his counterpart, Dr. Napolitano, in orchestrating the shift, and feels they complement each other well.

"We're working together on joint projects like safety and quality and he's helping me, because he knows the culture and people here," Dr. Colombani says. "And I can give him advice on Baltimore. So it actually works very well. Because I know all the pitfalls and work-arounds in Baltimore, and he knows them here."

. . .

Wherever Dr. Colombani finds himself, the memories of the day in 1981 remain crystal clear. He doesn't make a habit of talking about his role in the momentous incident unless asked, as he was for the 2011 bestseller about the event entitled "Rawhide Down: The Near Assassination of Ronald Reagan."

"For most of those 10 days that President Reagan was in the hospital, I have immediate recall - no one has to give me any prompts," he says.

He thinks about it if he happens to read a newspaper story tied to the assassination attempt or an update on Nancy Reagan. Indeed, the former First Lady became a daily part of life for Dr. Colombani and Dr. Gens in the aftermath. She would visit them at 4 p.m. during the 10 days to get an update, then go spend time her husband.

And it was Nancy Reagan who was the reason the President was ultimately taken to George Washington - and stayed there after being shot.

Her step-father was Dr. Loyal Davis, who taught and later worked with the man who served as Reagan's White House physician, Dr. Daniel Ruge (pronounced Roog-ee). When the Reagans moved to the nation's capital in January 1981, her step-father gave her some advice.

"He said, 'When you go to Washington, tell them you want to go to a civilian hospital if you ever get sick,' " recounts Dr. Colombani. "So after Reagan took office in January, the Secret Service asked what hospital they would prefer: Bethesda Naval or Walter Reed. And Nancy goes, 'neither.' Dan Ruge was sitting there next to her and says, 'No, we want to go to George Washington.' " The agents countered that the hospital couldn't be used because it wasn't secure, but Nancy Reagan responded that the matter was closed.

When Reagan was shot - pinned beneath Secret Service agent Jerry Parr, who pushed him back into the limousine - he insisted he was fine. He attributed the pain in his side to the force of the agent jumping on him for his protection. Accordingly, the limo headed for the White House. But the razor-sharp bullet had imperceptibly pierced his clothing and sliced into him.

When Parr noticed that the President was looking pale and not himself, he immediately ordered the limo to head to George Washington University Hospital - in accordance with Nancy Reagan's previously expressed wishes. Parr's decision likely saved Reagan's life in a race against the clock.

"He could have been dead if they'd gone to the White House and then came to us," Dr. Colombani says. "They basically arrived unannounced. When Reagan first came in, he stood up and tried to walk, but then passed out. So the nurses threw him on a stretcher and took him into Bay One. He was in shock."

Dr. Ruge insisted that the President be treated by GW's trauma team rather than personally taking command or calling in top surgeons from other hospitals - thus setting the stage for Drs. Colombani and Gens to go to work. "We got a chest tube in, got him IV fluids, got the blood going and got him resuscitated," Dr. Colombani says. "He was awake and talking, but we knew he needed to go to the operating room quickly."

In the whirlwind that followed, a third gunshot victim was rushed into the ER for Dr. Colombani to treat: Secret Service agent Tim McCarthy, who had bravely taken a bullet in the chest intended for the President. The doctor repaired the agent's extensive wounds in the operating room, and then went back and retrieved the bullet lodged in the man's right flank - only after Secret Service agents said they needed it as evidence.

The bullet Dr. Colombani retrieved was in good condition, unlike the other two. It had a hollowed out point filled with metal - a "devastator'' bullet meant to explode on impact and cause maximum damage. Fortunately, none of the three bullets that struck the agent, Reagan or Brady had done so.

The day after the shootings, the Secret Service returned in hopes of persuading Mrs. Reagan to move the President to Bethesda Naval or Walter Reed. "She goes, 'He's staying right here - deal with it,' " Colombani says. "So to deal with it, they put a SWAT team on the roof and took over a medical ward."

That entailed installing bullet-proof glass on the windows, putting up bullet-proof partitions - complete with a high-security check-point to gain entrance. Only three doctors with special white star badges were allowed through the entire 10 days: Dr. Colombani, Dr. Gens and Dr. Benjamin Aaron, GW's chief of cardiothoracic surgery who operated on Reagan and removed the bullet from his lung.

Even as they cared for the President, the doctors were subjected to extensive, precautionary background checks. The journal club room was turned into a White House communications office. A sitting room was created for Nancy Reagan, a conference room established for Dr. Colombani to provide regular briefings and a room with a bed was set aside for the Air Force officer who carried the briefcase containing the ever-present nuclear warhead codes.

All the while, Dr. Colombani was struck by the President's determination to get back on his feet.

"He was very motivated, and didn't want to take any medicine - he wanted to get up and move around, get going, get the show on the road," the doctor remembers. "You could sit down and talk to him. He'd be watching the Today Show in the morning - they'd be interviewing Pat O'Brien and he'd go, 'Hey, Pat, how ya doin'?' We'd sit down with him in the morning for a while and talk to him, and then his staff would bring in papers for him to sign."

Later, after Reagan was discharged from GW, the three primary doctors paid what amounted to a house call, more specifically a White House call, giving him a check-up at 1600 Pennsylvania.

"We sat and talked to him in his private quarters on the second floor for about an hour," Dr. Colombani says. "It was very nice."

Soon after, the President sent Dr. Colombani a letter of appreciation and a signed photograph. It was a prized keepsake for a job well done, and more than made up for the nice dinner he'd missed out on.

As it turns out, his wife, Linda, who ran a first aid room in a U.S. Senate Office Building, had told a friend earlier that fateful Monday that she'd defrosted a steak for her husband three days earlier - and if he didn't make it home for dinner as promised that night, she was giving it to their dog.

"Needless to say," Dr. Colombani recollects, "the dog got the steak."