ORANGE — The community rallied around Victoria “Torey” Johnson about 12 years ago when she was diagnosed with a rare form of brain cancer at 13. Radiation and chemotherapy proved successful and she went into remission.
But her tranquility and peace of mind were shattered in July, when a routine MRI revealed the disease had returned. Johnson has at least temporarily moved back to her hometown and her community wasted little time picking up where it left off.
“It was extremely emotionally overwhelming, the amount of support (my family received). There was no way we could thank people enough, because we were so grateful,” Johnson said, adding that the community is now “just as supportive, if not more so.”
A benefit for Johnson has been scheduled for 844 Brickyard Road in Athol on Aug. 29, 8 a.m. to at least 4 p.m., and a fundraiser at The Booth Salon, owned by Johnson’s stepfather, Jim Stanley, at 4 West Main St. in Orange is slated for Sept. 13 from noon to 5 p.m.
The Aug. 29 benefit will be held at the home of Rachael Chamberlain-Parker, who works at Athol Community Elementary School, where Johnson’s mother, Julie Stanley, serves as assistant principal. Jim Stanley explained anyone who donates $5 or more on Sept. 13 will receive a free spray tan (typically $25) at The Booth Salon.
Chamberlain-Parker is also the mother of Samantha Parker, who 12 years ago teamed up with friends Kaylee Vitols and Shaunna Woessner to bake cupcakes and craft purple ribbons to raise money for anything Johnson and her family needed. She explained the three friends emailed her once Johnson’s latest diagnosis was announced and asked how they could help this time around.
Chamberlain-Parker said people have donated items for a yard sale and 100 percent of proceeds will go to Johnson. Local businesses have donated gift certificates for a teacup raffle and people have contributed items to it. A donation of two cords of wood to be raffled off at $5 a ticket and there will also be a bake sale. She said social distancing will be enforced and cash will be accepted, though mobile payment services Cash App and Venmo will be available.
“It’s going to be very nice, I hope,” she said. “I love this family.”
Vitols, who was at Chamberlain-Parker’s home Monday afternoon to begin pricing items for the Aug. 29 benefit, said she found out about her friend’s new diagnosis after opening a GoFundMe crowdfunding link on Facebook.
“It was … really sad. Torey is a really sweet person. She wouldn’t hurt a fly. I don’t think she even curses,” Vitols said with a light laugh. She said she has known Johnson since kindergarten.
The GoFundMe page can be found at: bit.ly/31YBG7D.
Johnson explained she was diagnosed with diabetes insipidus, which the Mayo Clinic defines as “an uncommon disorder that causes an imbalance of fluids in the body,” when she was 11 and was told many children with this condition are also diagnosed with the pediatric cancer germinoma. She was diagnosed with cancer at 13 following a biopsy and she went into remission the next year, in 2009.
But lightning struck twice when, during a routine MRI, a mass was found on her spinal cord. Johnson and her mother learned via a telehealth conference that it was a germinoma and were blindsided.
“It was heartbreakingly devastating,” she said. “We held it together until (the conference ended) and then we just held each other and sobbed. It was like someone hit you in the chest with a hammer really hard.”
She said doctors don’t know of a case like hers — an adult getting a pediatric cancer.
But Johnson said her prognosis is good. She said her brain is cancer-free and she had surgery July 30 to remove the majority of the tumor. She said she will begin chemotherapy on Aug. 24 and be in the hospital for four to six weeks depending on how well her body responds to the treatment. She said the anticipation is scarier this time because she knows how miserable the experience is.
“I’d rather do anything else in the whole world,” she said.
She added that she will undergo an autologous stem cell transplant, which the Mayo Clinic defines as a process that “uses healthy blood stem cells from your own body to replace your diseased or damaged bone marrow,” because this round of chemotherapy is 10 times more potent than her childhood treatment. This will kill cancer cells and all other cells, meaning vaccines she received as a baby will be null and void and need to be administered again.
“It’s like a clean slate for my body, in a sense,” Johnson explained.
She is now in Boston for baseline treatment.
Her mother echoed Johnson’s sentiments about the support the family has received from friends and even strangers, calling it “incredibly significant.”
“It’s hard to express how much that support impacts us,” she said. “You just can’t express it with words.”
Reach Domenic Poli at: dpoli@recorder.com or 413-772-0261, ext. 262.