In January, Reilly Butler began the spring semester of her junior year at University of Kentucky, studying for a degree in Hospitality and Tourism Management. Her boyfriend, who she met while working at the Dark Horse in Riverhead, her hometown, was planning to move in with her by summer.
She celebrated her 21st birthday in February.
On March 8, after feeling unwell for several days, Reilly checked in to the medical clinic at her school.
“She was in the right place at the right time,” her sister Donna Butler said.
Just a few weeks after her birthday, Reilly was diagnosed with pineoblastoma, which meant she had developed a very large, cancerous tumor on her pineal gland, an endocrine gland located deep in the human brain.
The 2013 Riverhead H.S. grad was indeed at the “right place at the right time.” DanceBlue, a children’s hematology and oncology clinic, is right on University of Kentucky’s campus. The doctors there, knowing that Reilly’s age was an advantage when it comes to fighting cancer, decided to act aggressively.
“She went to the emergency room and she was in surgery getting the tumor removed three days later,” Butler said. “They wanted to act while everything was still on her side.”
There is no staging with pineoblastoma, Butler explained. “It’s all stage 4, and treated as such.”
Reilly just finished the first half of her first round of chemotherapy.
“It kicked her butt,” Butler said. “They go very aggressively with the chemo and radiation, because if even one cell survives it can come back full force.”
Reilly will finish round one of her treatment in August, but even if she appears to be in the clear afterwards, Butler said the doctors will keep a close eye on her for years to come due to the aggressive nature of the cancer.
“She’s going to be treated as a cancer patient for years,” Butler explained. “If after that, nothing is growing back, she’ll be declared cancer-free.”
In spite of all she’s been through, Reilly is staying positive, her sister said. “She’s all the doctors’ favorite patient. She’s very witty, she’s energetic, she loves to joke around with them. She’s seen all of Grey’s Anatomy, so she has her honorary medical degree and she doesn’t let them forget it.”
Reilly is never alone, with at least one member of her close knit family by her side at all times, Butler said. She is the youngest of Mike and Mary Butler’s three daughters. “We all take shifts,” said Donna Butler, the eldest of the three. She lives in Lexington, around the corner from the clinic where she’s being treated. Her boyfriend Ross moved in with her in April.
“It was good timing, because he was planning on moving there to be with her anyway,” Butler said. “She got the diagnosis and he already had a move-in day for April.”
Butler herself has been to visit a few times, but has a full-time job that keeps her busy, so her dad Mike ends up visiting the most. Even if she can’t be with her in person, Butler is making every effort to support her sister, even organizing a fundraiser in her honor tomorrow at Four Doors Down Restaurant in Mattituck.
The event will feature an open mic, raffle prizes and — for some — free haircuts.
At the end of the night, Butler and other volunteers will shave their heads as a donation to the St. Baldrick’s Foundation. Butler has created a fundraising page for people to sponsor her head-shaving, which is just shy of its goal of $1,000 with one day to go until it expires.
“Reilly has lost all her hair, which can be traumatic for a 21-year-old girl, but she’s rocking it,” Butler said. “So this is to be in solidarity with her.”
It will also raise awareness of the disease, she says, which is important because early detection is key with aggressive cancers. “If I get stopped and asked about my hair, I get the chance to inform someone.”
The money collected during the event itself will be donated to DanceBlue.
“That was Reilly’s idea,” Butler said. “She said, ‘it would really help out the kids I see here every day.’”
There is a $5 suggested donation at the door. There will also be a Chinese auction during the open-mic night. Raffles will be drawn at 9 p.m
