It’s been ups and downs for the Semlers since Reagyn Semler, now 10, was diagnosed with a brain tumor in 2005.
Wednesday was a little bit of both. The family from London, Ohio, just west of Columbus, celebrated the last day of Reagyn’s treatment at the newly opened Hampton University Proton Therapy Institute. But saying goodbye to the staff they saw almost daily wasn’t easy.
“I will miss my doctors and everybody here,” Reagyn said.
“I’m going to start to crying,” mother Carol Semler said. “It’s bittersweet. I’m excited to go home, but we’ve been here so long. This is like our family now.”
The last day of treatment included gifts donated by local businesses and a serenade by radiation therapist Mike Freeman, who dressed up like Alan Jackson and sang “Gone Country.”
Reagyn was the first pediatric patient to be treated at the cancer treatment center, which opened in August. A 200-ton cyclotron spins protons, which are found inside the nucleus of atoms, at 60 percent of the speed of light and beams them into treatment rooms.
The center initially treated prostate cancer patients but is now branching out to treat other tumors. Radiation oncologist Dr. Allan Thornton expects they’ll treat pediatric patients from all over the world.
Reagyn was diagnosed with a brain stem glioma, a type of central nervous system tumor, in 2005. Every year, about 3,800 central nervous system tumors are diagnosed in children, making them the second most common childhood tumor after leukemia. Brain tumors account for about 21 percent of all childhood cancer up to age 14, according to the American Cancer Society.
Her parents knew something was wrong when Reagyn kept exhibiting flu-like symptoms and didn’t have any energy. Then she lost muscle control in her eyes. Her parents took her to eye specialist, who saw fluid buildup and called for an immediate MRI. The scan detected the tumor.
Reagyn was admitted to the hospital that night and underwent emergency surgery to put a shunt in to drain fluid from her brain. The tumor was inoperable because of its location — in the part of the brain that controls balance, heart rate, swallowing and breathing, Thornton said.
The shunt relieved the pressure and swelling and doctors closely monitored the tumor. In 2008, it started growing again, and the family met Thornton, who was then with the Midwest Proton Radiotherapy Institute in Indiana. But it stopped growing and they shelved treatment.
In September, it started growing again. Reagyn came to Hampton Roads Nov. 9 to undergo treatment five times a week.
Reagyn also went to Children’s Hospital of The King’s Daughters in Norfolk for chemotherapy. Chemo will continue for about a year soon after she returns to Ohio.
Because there are only eight proton therapy treatment centers operating in the U.S., few other children’s hospitals have this kind of resource nearby, said Dr. Eric Lowe, a CHKD pediatric oncologist
Until now, CHKD had to refer patients to proton therapy centers elsewhere.
“It’s absolutely huge,” Lowe said. “The advantage is it hopefully gives you a more focused radiation rather than having the collateral damage. Where that matters is in small spaces. Who has small spaces? Kids.”
Reagyn’s mom, dad and little sister were around for her treatment. Her three other siblings stayed in Ohio with grandparents.
“She’s doing great, other than being a little tired and her appetite decreasing. She hasn’t had any of the other symptoms she could have had,” Carol Semler said. “You can look at her and not even know she has it.”
Reagyn’s mother remembers what it was like to hear her daughter had an inoperable brain tumor.
“It felt like someone just stuck a knife in me. You go to the hospital and you see these kids with life-threatening illnesses and you never think it’s going to be you,” Carol Semler said.
“I was scared,” Reagyn said of first learning she had a brain tumor. Now, “it’s not as scary as it was when I first heard.”
She’s looking forward to hanging out with friends and seeing her cat, Angel, which her parents got her when she first got sick.
Reagyn likes gymnastics, cheerleading and swimming, but Thornton told her to take it easy the next few months. He’ll work with her doctors in Ohio and monitor her progress.
“We would expect the tumor to shrink over the next six months until it is only scar tissue,” Thornton said.
Though the tumor was inoperable, it was a grade that was treatable, Thornton said.
“She has a very, very good prognosis,” he said.