Although Cheyannia Marburger hadn’t been acting like herself lately, it took a phone call to home by one of her teachers at Connoquenessing Valley Elementary that made things really sink in.
Something was very wrong.
Struggling with a math problem, Cheyannia, a second-grader, became badly frustrated and started crying for her mother. The teacher thought this very unusual because, as her mom, Deb Plaisted, can attest, Cheyannia never cries.
“Chey just does not do that,” Plaisted said.
In weeks prior, Cheyannia also had been acting tearful and whinny, and sometimes even mean. Once the type of girl who fought to go to school even when she was sick, Cheyannia teared up in the mornings before class—and she couldn’t stand to let her mother out of her sight without breaking into hysterics.
After several visits to the doctor, Cheyannia was diagnosed with pneumonia and then for possible ear, noise and throat issues, including severely infected adenoids.
In December, the stumbling and drooling she had started exhibiting worsened. Plaisted and a friend rushed the little girl to Children’s Hospital in Pittsburgh.
After being given an MRI, Cheyannia’s test results showed bad news—she had an inoperable tumor on her brain stem.
“We were shocked,” said Plaisted. “We always thought at the beginning she was misdiagnosed.”
Cheyannia immediately began six weeks of radiation at Children’s Hospital to help shrink the tumor, which is called a Diffuse Intrinsic Pontine Glioma. About 150 to 200 children every year are diagnosed with the tumor, which has had little advancement in treatment over the last three decades, Plaisted said.
The radiation can only be done once. Once the radiation stops its work, the tumor grow back at a rapid rate, Plaisted said.
Cheyannia and her family, however, are determined to find ways to keep fighting.
“She’s fought every day,” Plaisted said. “That is definitely one thing that sticks out. She wants to be here. She has this spice for life.”
Cheyannia and her family, who live in Evans City, recently have been chosen as the a nonprofit dedicated to helping local families. Each summer, the organization holds a golf outing as well as its signature fundraiser,
Typically held in August, the tournament
Plaisted said she was overwhelmed at being chosen as this year’s beneficiary family, althought it’s not the first time the community shown support for the family. In January, Plaisted’s friends held a spaghetti dinner to benefit Cheyannia that raised $12,000.
“It really has been amazing how the community rallies around and helps out,” she said.
Her hope now is to take Cheyannia to a clinic in Houston, Tex. for experimental therapy to slow the growth of the tumor. Plaisted said she has been in touch with the father of British girl diagnosed with tumor similar to Cheyannia's. With treatment at the Texas clinic, the girl's tumor has not grown any larger.
“It’s just amazing to read and to see how well she’s doing now,” Plaisted said.
Currently, Cheyannia, who no longer goes to school, is taking each day as it comes.
With symptoms that mimic a stroke, she has trouble using her left side and wears a brace on her leg. She also had surgery to place a shunt in her head. Because the tumor sits on her nerves, Cheyannia, who has taken up scrapbooking since her diagnosis, also has trouble with speech. Three days a week, she goes for physical therapy to try to build up her muscles.
“She has her days when she’s tired and kind of stumbly,” Plaisted said. “For the most part, she’s doing alright. She’s just trying to cope and go on.”
Plaisted has taken a leave of absence from her job as a certified nurses aide at Evergreen Nursing Home in Harmony to care for Cheyannia. For support, she leans on her older daughter, Sammi, 17, her son, Shayne, 22, and a small circle of friends, including Val and Vance Pierce, affectionately known as the Vaps. Sammi’s boyfriend also has been a great help to the family, Plaisted said.
Although Sammi and Shayne are young, they are dedicated to taking care of their sister. Plaisted said caring for Cheyannia has pulled the already tight-knit family even closer together.
“I couldn’t ask for better kids,” she said.
To learn more about Cranberry CUP, or to donate, click here. Follow Cheyannia’s journey by signing up for her Caringbridge page at http://www.caringbridge.org/visit/cheyanniamarburger