Despite a year of surgery, treatment and tests, the 9-year-old from Rosanky keeps bouncing back

By Melissa Segrest

It's been a long year for 9-year-old Viviann Snow and her mother, Kelsey Snow.

There have been exhilarating ups and depressing downs, a successful surgery and return to Smithville Elementary School, but also medical complications — two serious infections and a second bout with COVID-19. There were seemingly unending days and nights in hospitals, and lots of waiting.

“I feel like it’s gone on forever. It’s blurred our perception of time,” Kelsey said in late July.

Despite all of it, Vivi, as she’s known to friends and family, has been stalwart. She bounces back time and again. Actually, she’s even gotten a little ornery, her mother said.

Maybe some ornery is just what she needs.

Bluebonnet shines a light on Childhood Cancer Awareness Month »

In January 2021, in the middle of the coronavirus pandemic, Vivi was diagnosed with neuroblastoma, a rare form of childhood cancer found in only about 700 children a year in the United States. Most patients are infants. Vivi’s severe stomach pain was being caused by a tumor in her abdomen.

Her first round of chemotherapy began in February 2021 at Dell Children’s Medical Center in Austin. Since then, there have been many rounds of chemo and radiation.

Folks in Central Texas rallied around the little girl from Rosanky, southwest of Smithville in Bastrop County. That support, which has included a benefit concert last October, other fundraisers and individual donations, has helped pay some of the mounting medical bills, ensuring that Vivi gets the best possible care.

That included a two-week trip last September to Memorial Sloan Kettering Cancer Center in New York City to have her tumor removed. The center’s MSK Kids unit treats more children with neuroblastoma than any other U.S. hospital, according to the hospital’s website.

Before surgery, Vivi toured New York City. She loved it all: riding the subway, visiting the 9/11 memorial, seeing the Statue of Liberty, stopping in Times Square and having brunch at Trump Tower. She went to American Girl Place, the flagship world of American Girl dolls, where she got a Truly Me doll – a look-alike she named Lila, who also is missing her hair. When Vivi’s hair completely grows back, her doll will be given hair, too.

Dr. J. Ted Gerstle, chief of pediatric surgical service at MSK Kids, led the team that operated on Vivi. After 10 hours of surgery, a surgeon walked out to tell Vivi’s mother and father, Matt Martin, that the tumor had been successfully removed.

Next, severe infections hit Vivi, one after surgery in New York and again at Dell Children’s. She was on strong IV antibiotics and chemotherapy at the same time.

Her longest hospital stay was 20 days in April 2021. Every three to four weeks, she spends a week in the hospital for treatment.

COVID safety restrictions at Dell Children’s made visits from others, even Nana —grandmother Wanda Snow — impossible. Vivi missed being with family, friends and her beloved dog, Elvis Pugsley. Even though she spent some of the most difficult times snuggling with Dell Children’s therapy dogs, eventually the hospital allowed visitors, including her pug.

“Seeing Elvis always helped,” Kelsey said.

Kelsey, who works in administration for Ascension Seton Behavioral Health in Austin, continued to work remotely with a laptop and monitor through the pandemic and during Vivi’s hospital stays.

Vivi returned to school in January, getting chemotherapy treatments on weekends. Her last round of treatments was in April. Her lab tests improved but a scan showed a very small spot where the tumor had been. It could be scar tissue, but it raised some concern. More tests, scans and procedures were done, with results expected in early August. If there is cancer, Vivi has treatment options: oral drugs in trial studies or another surgery in New York.

“We planned for this to be over a long time ago. We were really hoping,” Kelsey said. “Her hair is finally growing back, and she’s counting down the days until it’s long again. She always wore it in a ponytail or braided, which she would swing around like a helicopter rotor.  “Right now, she has a teeny-tiny ponytail.”

Vivi now is more used to the medical routines, but she still gets sad or mad. “We’ve found ways to cope. And we have our time to be sad, then we suck it up because we have to,” Kelsey said. Mother and daughter keep going, rolling with the punches. “We stopped making plans, and now it’s more of a go-with-the-flow life,” Kelsey said.

Find updates and activities on the vivisvillage Facebook page. Donations can be made to the Vivi’s Villagers fund at First National Bank of Bastrop or via the Venmo money transfer app to @Vivis-Villagers.

“We cannot thank everyone enough for the support we’ve gotten on this long journey,” Kelsey said.