photo by: Lauren Fox

Lawrence resident Allie Montgomery was diagnosed with brain cancer in 2016. Since then, she's had four additional tumors.

Allie Montgomery is a survivor.

The 28-year-old Lawrence resident was diagnosed with brain cancer in 2016, at the age of 24. She had a grade three anaplastic ependymoma — a tumor on her brain, and one that was dividing rapidly. Since then, Montgomery’s journey has been a series of ups and downs held steady by her relentless spirit and strong faith.

After undergoing surgery to get the first tumor removed, Montgomery has faced multiple recurrences in the past four years. Two additional tumors have been removed in two separate surgeries, and in August, Montgomery found out she has two more. In mid-September, Montgomery began chemotherapy for the first time.

Throughout the past four years, whether Montgomery believed she was cancer-free or knew she had a tumor, she’s always classified herself as a survivor.

“I have this, it’s growing in my body and that sucks. But I’m surviving. I’m living life,” she said. “So I have always labeled myself a cancer survivor, no matter where I’m at in the journey.”

On Sept. 22, the Journal-World visited Montgomery in the backyard of her West Lawrence home to hear about her experience. Montgomery works as a dental hygienist at The Dentists in Lawrence, and lives with her husband, Mitchell Montgomery.

photo by: Lauren Fox

Allie Montgomery pictured with her dog, Kona.

Receiving the diagnosis

Montgomery started feeling different in January of 2016. She was frequently nauseous and had intense social anxiety, which was unusual for her typical outgoing personality.

“I spent probably most of 2016 just being like, ‘Why do I feel sick all the time?'” Montgomery recalled.

In addition to feeling sick, Montgomery also noticed something was constantly blocking vision in her eye.

Then, on the fourth of July that year, Montgomery experienced a visual aura, a flash in her eye that pulsated and got increasingly bigger, blocking most of the peripheral vision on her left side. Her normal eye doctor wasn’t in town, so Montgomery went elsewhere. The doctor said auras are common before a migraine. But Montgomery had never had a migraine before.

A few months later, when she saw her regular eye doctor for a check-up, Montgomery told him about the constant spot in her eye where she couldn’t see. It had gotten bigger.

Her doctor ordered an MRI, and on Oct. 13, 2016, Montgomery found out she had a brain tumor.

“I know people say they feel numb. I don’t know if I felt numb or just so overwhelmed you can’t absorb any more information,” Montgomery said. Her husband Mitchell and her parents, Chris and Doneen Childress, were in the room with her when she found out.

Montgomery’s father, Chris, had brain cancer in 1994, when Montgomery was only 2 years old.

“I was in the room with my dad when they told me,” Montgomery said. “And I looked at him and thought, ‘If he can survive, I can survive.'”

Montgomery remembers looking at her husband and feeling guilty he had to go through this with her. She thought about how her mom would have to go through it twice.

“I was heartbroken for me, but I was heartbroken for my family,” Montgomery said. “I still struggle with that. I struggle with feeling like this journey as a whole brings us all down. And that’s really hard.”

‘There’s no way this is real’

Montgomery had her first tumor removed on Oct. 28, just four days after her first wedding anniversary. After, she had six weeks of radiation. And for or the next two and a half years, she had regular follow-up MRIs.

In December of 2018, they found another tumor.

“And that was just as much of a gut punch as the first time,” Montgomery said. She and her family had hoped that, like her father, her experience with brain tumors would be “one and done.” Montgomery had surgery in January of 2019, and then did a shortened version of radiation after.

In 2019, Montgomery became a patient at the National Institutes of Health (NIH) in Bethesda, Maryland. Having ependymoma in the brain is rare for adults, Montgomery said, so they wanted her to be in a research trial.

In February of 2020, Montgomery was at the NIH when she found out she had a third tumor. Through tears, she asked, “Is this just my life now? Do I just live surgery to surgery?” The nurse practitioner said it likely wasn’t — that people could have three to six to ten surgeries and then be cancer-free.

“I was like, ‘Okay, even if you’re just saying that to make me feel better, thank you for saying that,” Montgomery said.

In March, just before things began shutting down due to COVID-19, Montgomery had surgery to remove the tumor. Then, in August, just five months later, a scan showed two more. She was in disbelief.

“This one was like, ‘This isn’t real. There’s no way this is real.’ But you’re staring at a doctor who’s telling you it’s real,” she said.

On Sept. 19, Montgomery started chemotherapy. She said that whereas her previous surgeries were localized, chemotherapy could help treat microscopic cancer cells that can’t be seen. She and doctors are hoping the chemotherapy will cause the two tumors to either stop growing or shrink. She might still undergo surgery and radiation to remove the two tumors in the future.

Montgomery said knowing that she has tumors on her brain isn’t something that constantly weighs on her, because she can’t feel them. But there are moments when she’s reminded.

“Anything weird that happens though, you wonder if it’s because of that,” she said. “You stumble over your words and you’re like, ‘Am I OK?’ That’s the life of a brain cancer survivor.”

‘This is going to be for something bigger’

Montgomery said her faith is a huge part of what is helping her get through this journey.

“I never struggled with the, ‘Why me?’ and I think that’s because…I grew up in a Christian home,” Montgomery said. “So, I have always known that while the world is full of really unfortunate events and the world is not always good, there is a God who loves me all the time. And if I let him, he will help me.”

Montgomery’s parents, Chris and Doneen, said she’s tough, and also credited Allie’s resilience to her relationship with God.

“I knew that Allie was strong. But I think until we walked through this, I didn’t have any clue exactly how strong she was,” Chris said. “And I also knew that she had a dynamic relationship with the Lord, but I didn’t realize what level it was on.”

Chris, who had brain cancer in 1994, said it’s way harder this time around. He said he felt “unprepared” to see Allie go through something like this, because he always believed the younger generation would help the older generation through health problems, not the other way around.

“It was a lot easier in 1994 when I was the patient than it has been since Oct. of 2016,” he said.

In addition to her relationship with God, Allie credited her family and friends as being a great support system. Her husband, she said, has been a wonderful caregiver.

“If it was a sport he’d be a professional,” she said. “It’s mind boggling, some of the things he’s had to endure.”

When asked what she would say to other people who have recently been diagnosed with cancer, Montgomery said she would tell others that “it’s okay to feel all the negative feelings.” It’s part of processing, she said.

“Don’t let anybody ever tell you you can’t feel those things,” she said. “But living there and dwelling there and staying there forever is not going to make you feel better…So try to find the people that help you dig yourself out of that hole and if you’ve never prayed before, now’s the best time to give it a try.”

Part of the reason Montgomery’s been able to remain positive, she said, is because she knows “this is going to be for something bigger.”

“This story is not about me,” Montgomery said. “This happening to me is going to help other people get through hardships in their life – whether it be cancer or something else.

“I knew that my life and my story was meant for something greater, as I think everybody’s is…I think everybody has a story that can help somebody else.”