Rockledge girl, 8, spending Thanksgiving in DC for rare brain cancer treatment

Thanksgiving this year for the Sleeth family will be spent in a Washington, D.C. hotel room, dining on takeout while 8-year-old Vivian recovers from treatment for a rare form of brain cancer.

The spunky, dinosaur-loving, Viera Elementary third-grader was diagnosed with DIPG, a terminal pediatric brain-stem tumor. Doctors only gave her six to nine months to live.

That was nearly a year and a half ago.

“I don’t care where we spend Thanksgiving because we have her here,” mom Brittany Sleeth said. “I’m super, super thankful because last year …”

The Rockledge mom’s voice trailed off while she gained her composure. Nearby, Vivian ran around her front yard while playing tag with a friend, shooting hoops with her 11-year-old brother, Corbin, and snuggling her new puppy Omega.

“Let’s have eggs and pancakes for dinner,” Vivian exclaimed while running across the driveway. “Corbin can make the pancakes, I’ll make the eggs and we can eat dinner in bed,”

A big smile appeared on Brittany’s face.

More: Mom, supporters shave heads for Viera Elementary second grader with brain cancer

“She makes really good eggs,” Brittany said. “Looking at her you would never know what she’s battling. She runs around like a normal child.”

It was back in May 2022 when Brittany and her fiancé noticed when Vivian watched television she was looking sideways. A check of the little girls’ eyes led to a series of medical tests and examinations. And then came the awful diagnosis.

Only about 300 children in the U.S. are diagnosed with DIPG (diffuse intrinsic pontine glioma) each year, the Dana-Farber Cancer Institute reports. DIPG is a highly aggressive, difficult-to-treat brain-stem tumor that is typically diagnosed in children ages 5 to 9.

Last November Vivian went to Washington, D.C. to undergo an experimental therapy. It was supposed to be a one-and-done treatment. Because it’s a trial, doctors are still learning and experimenting and decided Vivian should come back for more treatments.

Now she flies up there every five weeks where she undergoes MRIs, blood work and the procedure that requires her to be put to sleep while a cap is screwed onto her head allowing medicine to penetrate the cancer. Vivian’s hair has to be less than four inches to do this. Most days she wears a baseball cap to cover her short haircut.

“The doctors keep telling me she’s stable, it’s not changing, but I get nervous because we don’t know what’s going on,” Brittany said. “The most common phrase I hear is ‘We don’t know.’ We’ll ask if it’s working, ‘We don’t know.’ Do we know what can come? 'We don’t know.'”

When people ask what they can do to help, Brittany always has the same answer.

“Write a quick letter to your senator, share Viv’s story with others, donate to research, specifically toward DIPG,” she said. “Awareness is key with this monster, and we’ve got to get even louder about this.”

While they work to draw attention to DIPG, the family is cherishing the time they have, even if it’s eating a takeout Thanksgiving meal in a cramped, small hotel room.

“Viv talks about her future,” Brittany said. “She’ll say ‘When I’m 18, I want to do this’ or ‘When I’m in high school I want to do this.’ We never sat her down and said ‘This is the outcome,’ but she knows it’s not good. She’s so faithful. She’s like when God is ready for me…"”

Spitzer can be reached at mspitzer@floridatoday.com.

This article originally appeared on Florida Today: Rockledge girl, 8, spending Thanksgiving in DC for rare brain cancer treatment