On the hot, humid afternoon of June 9, 2022, in Rockledge, Florida, special education teacher Brittany Sleeth knew something was wrong with her daughter, Vivian.
Days before, Brittany noticed that Vivian had begun watching TV with a slight tilt of the head. Vivian, who didn’t want to bother anyone, explained that she was seeing double, so she “learned to fix it herself” by adjusting her head.
After three days of multiple doctor visits, Brittany found herself sitting in the oncologist’s office where her worst fears were confirmed. There, she heard the words “diffuse intrinsic pontine glioma” (DIPG) for the very first time. Feeling as if she were in a tragic movie, Brittany recalls the moment when the doctor asked Vivian to step out of the room. Brittany sat numbly as the doctor explained that DIPG was fatal and there was no cure. In shock, despair, and utter confusion, Brittany simply couldn’t understand how her spunky 7-year-old daughter, so full of life, could possibly have “just months to live.”
“There’s nothing we can do,” the doctor told her, as Brittany listened in utter horror. “Go home and make memories.”
Searching for Hope
Driving home, Brittany wondered how this cruel disease had been killing children for so long yet there was still no cure. Through her confusion and tears, she struggled to believe there were no other options for her vivacious little girl, who would move mountains to help someone else in her shoes. Vivian deserved more.
Immediately, Brittany began learning everything she possibly could about DIPG. She understood very quickly that it was an incredibly complicated disease, and it was vital to find a medical team that fully understood these types of tumors. Vivian’s initial doctor told the family that it wasn’t possible to biopsy her tumor. Brittany was not convinced and decided to start reaching out on her own. Dr. Gerald Grant of Duke University responded to her within 24 hours and just 12 days after Vivian’s diagnosis a biopsy was performed. She then began 30 rounds of radiation back in Florida at Orlando Health Arnold Palmer Hospital for Children.
PIONEERING THE FUTURE OF DIPG
After spending countless hours searching for someone who could save her granddaughter, Vicki Morton learned about a clinical trial out of Washington, D.C., called sonodynamic therapy with ALA. But the family faced one more obstacle in their journey when, days before testing for eligibility, Vivian contracted the coronavirus. Finally, in the fall of 2022, the family received word that Vivan would become the second DIPG patient to be accepted into the promising new trial. The technology works by using focused beams of ultrasonic energy to precisely target cancer cells in the brain without damaging surrounding normal tissue. It is currently only available to newly diagnosed DIPG patients at least 5 years of age who have not received any treatment other than radiation. The trial may eventually include up to 18 children, depending on treatment outcomes. Vivian is the first patient in history to ever have the entire pons of her brain treated and is doing well. She continues to fight her disease with patience and courage. Still, every now and then, Brittany can see the fear and understanding that lies deep within her daughter’s eyes.
“The day they put her to sleep for the procedure, I saw the tiny little tears run from her eyes as she stared up into mine,” said Brittany. “It was beyond excruciating. Her eyes showed the fear and confusion she was holding. All I could say was, ‘Mommy loves you. Mommy loves you. Mommy loves you!’”
The Brightest Light
The little girl who loves dinosaurs, God, soccer, and her new puppy Omega has gone through more suffering than any child should ever have to. Even after she was told she would have to shave her head in preparation for her clinical trial, Vivian accepted the news with quiet grace.
Just before starting the trial, Vivian’s family conducted a “Brave the Shave” event in their driveway. Friends and neighbors came out to shave their heads in support of the little girl who had always been such a bright light in the community. As the grand finale, Vivian and Brittany sheared off their own long, beautiful, blonde locks.
Vivian went first, flexing her tiny muscles the entire time in a show of courage. When it was Brittany’s turn, Vivian gently wiped away her mother’s tears, never once shedding one herself.
Throughout her illness, Vivian has managed to carry that light into every room she enters — even the dreaded radiation room, where she courageously underwent each session with no sedation, never once complaining about the long, exhausting sessions that filled her summer mornings. Even now, 5 weeks into her clinical trial, while other kids are focused on their holiday breaks, Vivian continues to exude love and hopefulness to all those that surround her.
Vivian was recently asked, if she could have any superpower, what would it be? Her response was, “I’d like to be able to heal people.” We all desperately hope that research will give doctors that very superpower in the fight against DIPG.
