Viera Elementary girl with brain cancer throws out first pitch as family prays for her health
Baseball in hand, Vivian Sleeth strode onto the diamond while Merritt Island High baseball coach Dan Wydner settled behind home plate.
Then, eyeing Wydner sideways, Sleeth cocked her head and started scooting farther away from the plate, making for a longer throw — and drawing laughs from the crowd.
Just shy of the pitcher's mound dirt, the Viera Elementary second-grader with terminal brain cancer uncorked a ceremonial opening pitch before Friday's Merritt Island High-Eau Gallie High game, ball landing in Wydner's mitt on the fly.
"She's still amazing. You still look at her, and wouldn't notice anything — you wouldn't think that she has what she has," said her mother, Brittany Sleeth, who works as a special education teacher at Palm Bay Magnet High.
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"She's still doing incredible. She hasn't digressed," Brittany said.
On Thursday, Vivian will return to Children’s National Hospital in Washington, D.C., for an MRI, blood work and neurological exams. That's where she underwent a groundbreaking experimental treatment in mid-November for DIPG (diffuse intrinsic pontine glioma), a rare, aggressive, inoperable pediatric brain-stem tumor.
“She’s just a ball of energy. I love when I get to see her — I feel my energy level is elevated just by spending time with her," said Dr. Lindsay Kilburn, a pediatric neuro-oncologist who has treated Vivian at Children’s National Hospital.
In early June, doctors diagnosed Vivian with DIPG after she started experiencing double vision. What started as a simple trip to the pediatrician expanded within a week into an unexpected series of medical tests — including a brain MRI and her grim terminal cancer diagnosis.
Kilburn called DIPG the most difficult tumor to treat in pediatric medicine. She said the dread cancer typically occurs in only 200 to 300 kids in the United States each year.
There is no cure.
With standard radiation treatment, the average child with DIPG will only survive nine to 12 months, said Dr. Hasan Syed, Vivian's pediatric neurosurgeon at Children’s National Hospital.
Syed and Kilburn, who described Vivian as "a very vivacious 7-year-old girl," are on the Children’s National Hospital team that administered her experimental DIPG sonodynamic therapy. This incision-free procedure focused ultrasound waves at Vivian's tumor site, Kilburn said, activating an intravenous medication that is designed to kill cancerous cells.
Syed said Vivian is his team's first patient to receive sonodynamic therapy to her entire pons, a portion of the brain stem. The clinical trial may eventually include up to 18 children, depending on treatment outcomes.
“Vivian looks great. We’re all very excited to see how she’s doing, how she tolerated the procedure. You know how active Vivian is, just in terms of her behavior and demeanor," Syed said during a January interview.
"We’re very excited about her journey and her recovery," Syed said.
Vivian has nearly reached the nine-month mark since her cancer diagnosis, and she displays no motor-skill symptoms or neurological issues. But last week, Brittany described the heartbreak of "living in the DPIG hell" in a post in the "Team Viv" Facebook group, which now has more than 2,100 followers.
"Living day-to-day, having to remain positive, but not being able to plan or know if your child will live another day is horrific, mortifying. The constant 'sit and wait' is the worst," Brittany wrote.
"Hearing of other DIPG children passing all around you is absolutely numbing. It's truly a world (where) no one can understand the pain, unless you're living through it," she wrote.
In mid-February, Brittany used the Facebook group to share photos and videos of the final 24 hours of a 6-year-old Nebraska girl's life before she died. The girl, who suffered from DIPG, also participated in Vivian's clinical trial.
The Sleeths raised community awareness of DIPG in October by hosting a "Brave the Shave" event in the driveway of their Rockledge home to boost Vivian's spirits: She was afraid to shave her head before her sonodynamic treatment. Brittany shaved her head as well in a sign of support.
The Palm Bay Magnet High girls basketball team recognized Vivian before their Nov. 30 game against Viera High, presenting her a signed jersey and a basketball.
Dingers Training Center in Rockledge and Stumpy's Hatchet House in Cocoa have hosted action-based fundraisers for the Sleeth family, who also sat courtside and met the players during an Orlando Magic game in December.
And a GoFundMe page has generated more than $47,000 for the Sleeth family.
Friday, Vivian wore a "Fighting To Make DIPG Extinct!" T-shirt featuring a blue dinosaur. She warmed up her arm by playing catch before the baseball game in the parking lot with her 10-year-old brother, Corbin.
She also surprised her mother and grandmother, Vicki Morton, during their conversation with FLORIDA TODAY by walking up and asking, "Is there a garbage can?" Vivian had grabbed a Publix bag and picked up litter along the chain-link fence surrounding the baseball field.
"(Brittany's) having a really hard time. We're all having a hard time. We're praying for the miracle," Morton said, watching Vivian.
Brittany remarked on how beautiful her daughter's vibrant "icy-blue" eyes are.
"We have a lot of people praying for Viv. And I know that they are following her (on Facebook) because when I make posts, there's quite a few that write you. But in those gaps, it's like you're kind of back to square one where you're by yourself," Brittany said.
"You just feel lonely, in a sense. And you feel forgotten. You want that cure so badly."
Rick Neale is the South Brevard Watchdog Reporter at FLORIDA TODAY (for more of his stories, click here.) Contact Neale at 321-242-3638 or rneale@floridatoday.com. Twitter: @RickNeale1
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This article originally appeared on Florida Today: Rockledge girl with DIPG throws pitch at Merritt Island baseball game
