Fundraisers planned for Wind Ridge boy with inoperable brain tumor
Tavion Terry was diagnosed with a rare childhood brain tumor known as diffuse intrinsic pontine glioma.
Tavion dressed as Batman
Tavion at a Pirates games with The Pirate Parrot
Tavion Terry wants to be a soldier when he grows up. He loves what many 6-year-old boys love – toy guns, army action figures and Batman.
But Tavion, of Wind Ridge, is not a typical little boy. He’s already in the middle of a war, fighting for his life. On May 13, doctors found an inoperable brain tumor and predicted Tavion would only have six to 18 months to live.
“It’s hard to think that one day he possibly won’t be here,” said Tavion’s mother, Desiree Burns. “But he’s only 6 years old with a full life to live. If I could take it away from him I would.”
Burns said Tavion, who is unaware of the extent of his illness, was diagnosed with a rare childhood brain tumor known as diffuse intrinsic pontine glioma, or DIPG.
“He just knows that he’s sick and that he doesn’t feel good,” she said.
At first, it seemed like a regular ear infection, Burns said, but after he finished the antibiotics, he still had headaches and began seeing double. When she took him to Children’s Hospital of Pittsburgh of UPMC for more tests, she got the devastating news.
“It was heartbreaking,” she said. “It wasn’t real at first. I just stared at her thinking she was lying. They don’t give you any sense of hope.”
Tavion started six weeks of radiation every day to buy time and to, hopefully, shrink the tumor, she said. He just finished that treatment July 11 and they will find out Aug. 3 if the radiation was successful.
“He’s been a champ through this whole process. He has tolerated the medication really well,” Burns said of her son who is entering first grade at West Greene. “He’s very outgoing, he loves being around family and friends. He loves school and does really well.”
But she’s worried his first-grade experience will be shadowed by the tumor growing back too quickly. That’s why she’s trying to get him into clinical trials either in New York City or Bristol, England. The trial treatment would insert a tube into the tumor and release chemotherapy treatment directly into the center of the tumor to shrink it and get rid of it completely, Burns said.
She applied for the clinical trials as soon as Tavion was diagnosed, but from the research she’s done, she said she will probably need $50,000 to $100,000 to pay for the treatment, not to mention travel and living expenses depending on where they are accepted.
“I don’t even know how long we’d be there,” she said, although it would be at least two months. “It’s very stressful, not knowing where our next step is or if we’ll get accepted.”
Burns said that since DIPG is considered rare, there’s no funding for its research. She questioned whether the disease is rare because her son isn’t the only child to recently fight the cancer in Greene County. Max Cunningham, 12, of Aleppo Township, died from the disease in May 2015.
“I’ve heard that children sometimes get denied because the clinical trials are full,” Burns said. “It’s heartbreaking to me.”
Saving money for the clinical trials became impossible when Burns–the main provider for herself, Tavion and her 2-year-old son, Drayden Burns–had to take a leave of absence from her job as a registered nurse at the Golden Living Center in Waynesburg, to be with Tavion. Her mom has been helping out with the bills.
“I’m not working right now so we don’t have a lot of money coming in to pay all of the bills,” she said.
Because Tavion’s illness is terminal, he automatically qualifies for health insurance through the state, but Burns has had to pay for her work’s health care coverage fees out of pocket. She’s also paying a monthly rent for housing, utilities, a car payment and traveling expenses for Tavion’s treatment.
Burns said she didn’t want to turn to public fundraisers, but when expenses started adding up at the end of June, she started an online fundraiser page called Tavion’s Miracle at GoFundMe.com. It’s brought in more than $8,200 so far.
“One woman gave us $1,000 and I don’t even know who she is,” Burns said. “Most of the people we don’t even know who they are. Every dime, penny and nickel that we’ve received goes to the Tavion’s Miracle account to pay for the clinical trials.”
There are also a number of community fundraisers for Tavion, including one Saturday, sponsored by Central Greene Pediatrics and the Greene County Rattlers Motorcycle Club.
The motorcyclists will have a poker bike run, with registration from 10 to 11:30 a.m. and kickstands up at noon at 236 Elm Drive in Waynesburg. For $20, bikers can join the 70-mile ride to five different stops across Greene County. For an additional $5, the riders can pick up a playing card at each stop and whoever has the best poker hand at the end of the ride wins half the pot.
A spaghetti dinner will follow from 2 to 6 p.m. at the Jefferson Fire Hall, 1483 Jefferson Road.
There will be another spaghetti dinner and Chinese auction from noon to 4 p.m. Aug. 7 at the Rogersville Volunteer Fire Department and a corn hole tournament at 10:30 a.m. Aug. 27 at the Jacktown Fairgrounds, which will be followed by a ham dinner at noon.
“It’s overwhelming,” Burns said. “It amazes me that there are so many good people out there and everybody has done a little bit of something. Greene County has just really pulled together to help us out as much as they can.”
Right now, Burns said she’s trying to rack up as many wonderful memories with Tavion as she can. The Make-A-Wish Foundation, which provides dream-come-true opportunities for sick children, is sending the family to Lego Land and Walt Disney World in Florida next week after the charity ride.
“We had to be strong and put a smile on our face,” Burns said.
Tavion’s father, Nathaniel Terry, of Fairmont, W.Va., who’s living with Burns and the children during this time, said their family will continue to look for ways to beat the disease.
“He’s always been the type of kid to try new things and always do his best with things,” Terry said. “We’ll keep fighting until something changes.”
Donations cna be made directly to Tavion’s treatment by sending checks to Community Bank made payable to Desiree Burns and marked for Tavion’s Miracle Account.