Tue Sep 11

Meet the Dragonfly girls

Posted by rrichardson September 11th, 2012, 9:12 am

 

Cliff Radel reports:

Everybody knows the guy who got his head shaved at Great American Ball Park. He’s Marty Brennaman, the Hall of Famer and Reds broadcaster.

But, who were those four little girls on the field that night?

Dragonfly girls

Gracie Tapp, 5, of West Chester, was diagnosed in January 2012 with Acute Lymphoblastic Leukemia.
The Enquirer/ Amanda Davidson

Abby Dedic, Madison Owens, Riley Slattery and Gracie Tapp.

Those little beauties, ages two to five, share a special bond. Each one dreams of being a princess. Each one is already a mighty warrior. Each one is battling cancer.

That disease strikes without warning or compassion. Cancer always seems to attack on a special day, a birthday, a holiday, a weekend. But then, when you are fighting this form of evil, whether you are four or 40, eight or 80, every day is special.

Three of those four little girls have no hair. Abby, Madison and Gracie lost it to chemo. They were the ones who ran up to Brennaman as if he were Santa and received hugs and kisses on their bald heads from him after he spoke to the crowd.

Riley, curls touching her shoulders, slept through much of the Aug. 3 event. She missed Brennaman showing he was a man of his word as well as a man of the moment.

Earlier in the season he privately vowed to Reds coach Chris Speier that he would shave his head if the home team won 10 games in a row.

“I opened my mouth and put my foot in it,” Brennaman said, “which I am capable of doing on a daily basis.”

When the Reds’ winning streak reached 10, Brennaman upped the ante. He said he would have his head shaved in public if $20,000 in donations went to the Reds’ Community Fund charity. Donations eventually reached $100,000. And Brennaman wound up touching hearts with his shaved head.

That night, he wore a personalized Reds jersey. Under the uniform top, he wore a blue and yellow T-shirt from the then little-known Dragonfly Foundation, a Mason-based non-profit currently helping 215 Cincinnati Children’s Hospital Medical Center patients with cancer and blood diseases. The four little girls, each one a Dragonfly aided by the foundation, wore blue and yellow T-shirts, too.

Dragonfly girls

Abby Dedic, 4, spreads her arms as she walks through Sawyer Point, in Cincinnati. Abby’s family moved to Cincinnati temporarily to be closer to Cincinnati Children’s Hospital while she was receiving treatment. Abby was diagnosed with Alveolar Rhabdomyosarcoma in September 2011, and was Stage IV at diagnosis.
The Enquirer/ Amanda Davidson

Brennaman then played Clark Kent, ripping open his shirt to become Superman. He spontaneously showed off his Dragonfly T-shirt and, unprompted, told the ballpark crowd and television audience about the foundation’s good deeds.

His T-shirt proclaimed: “I’m still me.” The Dragonfly folks use that message to let people know cancer patients may lose their hair. But, they still retain their heart.

Brennaman heard about the foundation from his friend, John Burns, president of Cincinnati Bell Technology Solutions. Burns had visited Children’s oncology ward earlier in the week. A patient told him, “when Marty gets his head shaved, he’s going to look like us.”

“That got me right here,” Brennaman said, placing his hand over his heart. “I have five grandchildren, from a senior in high school to a two-year-old boy. You take their health for granted. Then, when you see a situation like these little kids, it makes you realize how lucky you are.”

The four little Dragonflies are not as fortunate. They live by the numbers on their blood tests. The red cell count. The white cell count. The immune system levels. When they are good, life goes on.

Cancer turns lives up-side down and shakes families to the core. It spoils the innocence of childhood. No little girl should have an IV pole in her bedroom.

“They know nothing but pain and treatments and hospital visits,” said Riley’s mom, Heidi Slattery of Springboro. “This is normal to them.”

IV poles in bedrooms and hospital stays make up just part of the collateral damage inflicted upon these young cancer patients and their families. The disease creates bills and generates stress. “Families lose their homes, cars and jobs,” said Ria Davidson, Dragonfly’s co-founder. “The strain makes some parents just walk away from the family.”

The foundation does not pay bills. Dragonfly provides everything else from tickets to concerts and ballgames, to a sympathetic ear in the middle of the night and a care package for first-time patients containing such basics as a quality toothbrush, impossible to find in a hospital gift shop.

These little things allow family members to give their complete support when the patient must perform that true act of courage known only to someone with cancer. This courage comes into play when the patient must walk down the hall of the oncology ward for another round of chemotherapy hoping to get some relief from the excruciating pain and praying to enjoy another day.

“That’s why I told people about the Dragonfly Foundation that night at the ballpark,” Brennaman said.

“People of all ages can relate to what they are doing for these little kids.”

And they have. Visits to Dragonflys’ website – www.thedragonflyfoundation.org – have increased 100-fold. Contributions to the organization have grown tenfold.

“That’s why that night, aside from the actual game of baseball, is the best night I ever spent in a ballpark,” Brennaman said.

And, that just goes to show how much good can come from putting your foot in your mouth.

The Dragonfly girls

Gracie Tapp, 5

“Hi! I’m Gracie and I’m five. My favorite color is purple. Look at my dress.”

And with that, Gracie Tapp used one hand to hold out her dress’ purple hem. With the other, she gingerly gripped a glistening water balloon.

Gracie was entertaining visitors while playing in the front yard of her house at the end of a West Chester cul-de-sac. She shares the home with her parents, Kody, the family dog, and her 3-year-old siblings – sister JoJo and brother, Lucas – whom she calls, “my twins.”

Asked when she will turn six, she gave a big sigh. Then she quickly answered: “On my next birthday.”

That’s Gracie, a worldly kindergartener who’s five going on 25.

Of the three little girls who ran to Marty Brennaman’s out-stretched arms at Great American Ball Park, she was the one holding her hands over her ears.

“I thought the fireworks were going to come,” she explained.

Gracie has ALL, acute lymphoblastic leukemia, the most common of all childhood cancers. Three thousand American kids are annually diagnosed with the disease that has a cure rate of 84 percent.

The morning of the Marty Party, Gracie had chemo at Cincinnati Children’s Hospital Medical Center.

She felt good after the session, so her family took her to the game. When you have chemo and you’re not sick, you celebrate.

Gracie’s ALL took months to diagnosis. One day last September she stood in her front yard kicking a soccer ball. She tripped over the ball and fell to the grass in intense pain.

Her parents thought she had broken a bone. So did her doctors.

“They put one foot in a cast,” said her mom, Ann Tapp, an engineer.

“Then, she did the same thing with the other foot and they put her in another cast,” noted her dad, Davis Tapp, a teacher.

The pain intensified. Gracie lost the ability to walk.

Rounds of doctors visits and tests followed. “We went to specialists in endocrinology and neurology and lots of other -ologies,” said her mom.

Finally, on New Year’s Eve, the diagnosis turned to ALL. The source of Gracie’s pain came from her bone marrow. It was working overtime, causing her bones to bulge.

Treatment and extended hospital stays began in January. So did the tears in the eyes of her parents. Their hearts filled with the fear of losing this precocious little girl who says hello to everyone.

“We knew she had the best of the worst when it comes to cancer and cure rates,” said her dad as he stood by Gracie and the water-balloon toting twins. “But that still did not keep us from feeling our world had ended.”

Months of chemo took their toll on Gracie’s hair. It started falling out in clumps.

“I missed my hair at first,” she said. Shrugging her shoulders and squeezing her water balloon, she added: “But I got used to it.”

Visits from the hair fairy helped her adjust to baldness.

“She came at night and left things, like paint supplies, in a corner of my bedroom,” Gracie said.

“One night I heard her talking downstairs,” she added. “I think she was talking to the tooth fairy.”

That tooth fairy, “has some high expectations to meet,” said Gracie’s mom.

She watched Gracie walk down their driveway. The 37-pounder moves with the tentaive gait of someone who has taken a step and experienced excruciating pain.

“Knowing what she has been through,” Ann Tapp said, “and now to see her walk and ride her bicycle is truly a miracle.”

Before getting on her bike, Gracie adjusted the bow on her headband.

When the bow was centered, she gently touched the stubble on her head.

“I wear this bow,” she explained, “because I want to look pretty.”

Riley Slattery

Riley Slattery started fighting for her life when she was five days old.

Two years later, she’s still fighting.

You wouldn’t know that to look at her.

As this bubbly two-year-old zips from room to room of her parents’ Springboro home, her blonde curls cascade onto her shoulders. She stands in the dining room and makes believe she is cooking meals for her dolls. She walks up to her beloved five-foot-tall stuffed toy giraffe and plays doctor with a stethoscope she took home from one of her many stays at Cincinnati Children’s Hospital Medical Center. Skipping into the living room, she commandeers the rug for her putting green. A wicked swing with her golf club shoots a ball under a sofa. She giggles. She races to her dollhouse and rings the doll family’s doorbell. “Who’s there?” she sings out.

“People see her and say, ‘my goodness that girl looks gorgeous, she looks perfect,’ ” said her mother and businesswoman turned home nurse, Heidi Slattery. That’s what many said the night of the Marty Party at Great American Ball Park.

Passersby admired the fourth Dragonfly’s long locks. Someone said, “she can’t be sick.”

“That’s when we explain to them what she has,” Heidi Slattery said. The names of each ailment are longer than any mother should have to try to pronounce much less a two-year-old should have to endure.

Chondrodysplasia punctata, neutropenia, IGG deficiency, mesomelic dwarfism, immunoglobulinemia, Schwachman-Diamond Syndrome, deletion of chromosome 3, acute lymphoblastic leukemia, unformed tear ducts and a sacral dimple add up to rounds of chemotherapy, surgeries, a compromised immune system, late-night emergency runs to the hospital and mountains of bills.

“We are going to owe money to Children’s forever,” Heidi Slattery admitted as she sat next to her husband, Ryan, a shoe store manager. “But Riley’s health is worth it.”

Riley’s woes began on her first visit to her pediatrician when she was five days old.

“His diagnosis was: ‘Care for her while you can.’ Her first life expectancy was one month. Then, a year. Then, two years. Now,” said Heidi Slattery, “we have 10 years.”

Riley’s mom and dad hope she continues to prove the doctors wrong. And, that she keeps running from room to room.

Madison Owens

They call her the Dragonfly with the yellow hair bow.

She’s also the one who has been battling cancer since before she was born.

That’s how Madison Owens’ grandfather, Dale Owens, describes her when people tell him they saw three little girls with no hair run up to Marty Brennaman the night he got his head shaved.

That night at the ballpark, Brennaman pointed out Madison to the crowd and the message on her T-shirt: “Made you look.”

She knows people look at her shiny, hairless head.

“I don’t miss my hair,” she said. “But sometimes my hair bow gets a little itchy on top.”

Madison – “don’t call me, Maddy” – sat in her bed at Cincinnati Children’s Hospital Medical Center. Thin and soft-spoken, she tried to act like a regular five-year-old. She watched Sponge Bob on TV. She fiddled with her iPad. She told her mom, Bethany Owens, a bank teller supervisor, what she wanted for her up-coming birthday party: “Chocolate cake with whipped chocolate frosting.”

While she tried to act like a normal kid, abnormality stood by her bedside. A bag of a crystal-clear chemotherapy medications hung from an IV pole. Drip . . . Drip . . . Drip! The cancer-killing cocktail slowly and silently dripped into a tube running from the bag to a port in her chest.

Madison knew what was going on and why. A tumor had recently returned, unexpectedly, to her left kidney and spread to her stomach.

“The doctors took out that tumor about seven days before she went on the field with Marty,” said Dale Owens, the head of the four-generation Crosby Township household that is home to Madison and her mother.

By her grandpa’s estimation, she is “an exceptional child. When she came home from the surgery, she never asked for pain mediation. She was so happy to be home. She stayed active.”

She rode her Barbie Bling It bike. She savored play dates with her cousins.

She tried to act her age. That’s tough when you have been through so much, so young.

“A sonogram found a cancerous tumor – a neuroblastoma – on her left adrenal gland before she was born,” Dale Owens said. Physicians recommended leaving the tumor alone. Prenatal tumors have an incredibly high rate of dissolving on their own. Madison’s did.

Then, this past May, the tumor came back. Surgery and chemotherapy followed. Madison lost her hair.

She just finished her fifth round of chemo. By now, Madison knows her way around the oncology ward.

With mom steering, she stands on the base of her IV pole and glides – wind-surfer style – down the hall to a game room. She regularly stops by the nurses’ station to see old friends.

She glides back to her room. A friendly nurse awaits. Time to check Madison’s vitals.

The nurse grabs a clip to measure the oxygen level in Madison’s blood. Adults stick out a finger for this procedure. Not Madison.

She slyly slides her big right toe from under the covers. She grins. The nurse acts surprised. Madison’s vitals are checked. The chemo keeps dripping.

When she goes home, Madison will get shots for pain and to boost her immune system from her grandfather.

“I stick her,” he said. “But, she never complains.”

Neither does he. He’s told his fellow electrical linemen what he does for Madison.

“I work with some guys you describe as, ‘pretty tough,’ and they say: ‘I couldn’t do that.’ ”

He can. And he does. He would do anything for the girl with the yellow hair bow.

Abby Dedic

She raced to be first line for a hug and kiss from Marty Brennaman.

That’s no surprise. Abby Dedic usually leads the charge when she sees a stranger.

She recalled Brennaman planting a kiss on top of her hairless noggin.

“That felt nice,” Abby said as she played with her older brother, Will, and some plastic dinosaurs in their family’s apartment at Downtown’s One Lytle Place.

“We have such a beautiful view up here,” her mom, Melissa Dedic, said, gazing west as the sun set on the Ohio River.

“I’d get up in the middle of the night to see the lights of Newport play on the river. Then I would realize I’m living in the middle of a nightmare.”

The riverfront tower became the Dedics’ home away from their Fort Wayne, Ind. home after Abby was diagnosed in September 2011 with alveolar rhabdomyosarcoma. That’s the most common muscle/tissue cancer in children. Accounting for three percent of all pediatric cancers, this form of the disease strikes 350 kids every year in the United States.

As Abby and Will played with their dinosaurs, the grown-ups in the room talked about the good Brennaman did by calling attention to the Dragonfly Foundation and its mission for helping little kids, little Dragonflies, like Abby. Someone mentioned his first name.

“It’s ‘Barney,’ ” Abby whispered, setting the record straight.

“She can’t say, ‘Marty,’ ” her account representative father, Bill Dedic, noted softly.

“It’s ‘Barney,’ ” Abby said again, sounding a tad peeved that she had to repeat herself for these adult lunkheads.

No one bothered to correct her. Best not argue with someone who lost her hair from 10 months of radiation and chemotherapy and still has the courage to wear a Dragonfly shirt with the message: “I’m still me.”

“Me” as Abby goes is a feisty, yet friendly, four-year-old, who delights in singing off-key, at the top of her lung.

Only one of those organs dedicated to breathing works for her. That doesn’t stop her, however, from running and playing outdoors, her blood levels and immune system permitting.

No one is a stranger around her. She regularly runs up to people walking their dogs along Bicentennial Commons and announces: “Hi! I’m Abby. What’s you puppy’s name? What’s your name?” No wonder she was the first Dragonfly to reach Marty or “Barney” Brennaman.

The Dedics moved to the Queen City last fall to be closer to Cincinnati Children’s Hospital Medical Center for Abby’s treatments. Their move was triggered by what happened on the evening of Sept. 21, 2011, the night of Will’s fifth birthday party. Abby was getting cleaned up for her big brother’s big night.

“We found a lump on her right abdomen while lifting her out of the bathtub,” her dad recalled. Before the week was out, the lump had grown. Tests showed the cancer “had spread to four lymph nodes and . . . Abby’s bone marrow.” They whisked her to Cincinnati Children’s for treatment.

Abby’s months of chemo and radiation ended last week with good news. Her latest tests came back with these initials: NED. That’s the cancer patients’ favorite name. NED stands for “No Evidence of Disease.”

“Abby enjoyed being in the hospital,” said her mother, Melissa Dedic.

“That was her social scene,” her dad added. “The doctors and nurses became her friends.”

She would cry when she had to leave her pals with the stethoscopes.

Tears turned to laughter and a tune, when she made her way to the apartment at the end of the hall in One Lytle Place.

“She’d start singing, in the most off-key, but beautiful, voice, ‘Tomorrow,’ from the Broadway musical ‘Annie.’ ”

The song opens with words fit for a little girl just set free from a cancer ward.

“The sun’ll come out tomorrow.

“Bet your bottom dollar that tomorrow there’ll be sun!

“Just thinkin’ about tomorrow clears away the cobwebs and the sorrow ’til there’s none!”

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