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New Yorker Runs Marathon to Honor Dad Living with a Brain Tumor

Published on March 6, 2024 in Gray Nation Endurance

A woman runs with her hands up during a marathon in honor of her dad living with a brain tumor.

Nearly 60 runners, including Karen, represented the brain tumor community as members of the Gray Nation Endurance® (GNE) team as they raced 26.2 miles in the 2023 TCS NYC Marathon. Collectively, the team put meaning behind their miles and raised more than $363,000 for the National Brain Tumor Society.

“The marathon was incredible,” Karen said. “Everyone acts like you’re a celebrity for a day. You’re running through all of New York, all five boroughs, and the whole city is cheering you on. I’ve struggled at times with finding my footing here, but I feel I now understand and see this city for the wonder she is. It was like a love letter to New York, re-experiencing her in all her forms.”

Karen ran in honor of her father, who had been diagnosed with a brain tumor only the year prior. 

“For me, it was really important to run the marathon because I wanted to show him that we can achieve even the dreams that feel impossible when we take it day by day,” Karen said. “With each milestone achieved, I wanted him to know I can do hard things. I can do new things. I can approach the challenges of life with a smile on my face. And more than that, he can do the same, and we can do them together.”

Addressing a Benign Brain Tumor Diagnosis

In early 2022, Karen’s father began throwing up multiple times a day and lost 20 pounds over the course of a few months. Specialists could not pinpoint the cause, but they suspected it was due to his stomach. The severity worsened, ultimately landing him in the emergency room in August 2022, where a scan uncovered a large mass in the right side of his brain.  

Karen left her life in New York and flew to Michigan for her father’s surgery two weeks later.

“That was my introduction to becoming a caregiver,” Karen said. “I was definitely shocked and lost; I couldn’t understand why our world was turning upside down.”

A runner looks down at her running shoes alongside vibrant orange leaves resting atop the green grass.
Karen turned to running in the months after her father’s diagnosis

Karen’s dad underwent an 8-hour surgery to remove much of the mass, which was later determined to be hemangioblastoma, a benign brain tumor. He then stayed in the ICU for about six weeks because the health care team could not stabilize him. He suffered significant nerve damage post-surgery: he is largely paralyzed on one side and unable to breathe on his own.

“Naturally, we are thankful that the tumor has been removed,” Karen said. “But we were not prepared for the difficult life he is living now, and the ripple effect it’s had on every aspect of our lives as we try to rebuild.”

Today, Karen’s father resides in a nursing home, fully disabled and dependent on a ventilator and artificial food.

“Benign has a new meaning to me, as it can include severe disability and paralysis,” Karen explained. “The tumor was on my dad’s right side near his ear. He can’t hear from that ear, his vision is affected, and he’s paralyzed completely on the right side.”

Finding an Alternative Form of Communication

Getting an iPad in her father’s hands opened up communication between the four family members. Before the iPad, they weren’t sure what his mental state was because he couldn’t communicate. 

“That made a difficult situation even more difficult because we didn’t want to misinterpret what he wanted,” Karen said. “He is now able to text with his left hand a little bit, so we’ve re-established the family group chat.”

Karen’s mother traveled to NYC to watch Karen run in the marathon and text updates to her father throughout the race.

“She took screenshots of the routes, the splits, and more to show him how big of a deal it was — her words, not mine,” Karen said, laughing. “I feel incredibly lucky in this moment to have his presence back in my life.” 

Navigating Conversations Outside Native Language

Karen’s father grew up in a small rural town in central China and immigrated to the U.S. to earn his PhD before she was born.

“My dad is the one who paved the way for our whole family,” Karen shared. “He has always been that rock.”

Twelve people stand, some with signs, to cheer on a woman running in the NYC Marathon in honor of her father living with a brain tumor.
Karen’s community stepped up to support her family and on race day

Even for a native English speaker, understanding medical terms and processes after an unforeseen diagnosis can be confusing. For families whose first language is not English, maneuvering through the medical landscape is particularly challenging.

“It’s difficult for me to understand the lengthy and intense medical and legal jargon that comes with his diagnosis, even more so for my mother,” Karen explained. “That has been a particularly challenging part of caregiving for the both of us.” 

It was the community of support that surrounded Karen and her family that made all the difference. Her mother’s best friend helped coach her through financial and legal paperwork and decisions, while their family friends raised more than $30,000 through crowdfunding to help pay bills when her mother lost her employment following her father’s surgery.

“Our community has shown us that it is not a weakness to speak up and ask for support,” Karen said. “In fact, being forthcoming and transparent has welcomed in different resources and networks as we navigate a complicated legal, financial, and medical landscape.”

Running Became Therapeutic

Inspired by her friend who ran a marathon after recovering from a torn ACL, Karen decided to train for a half marathon. It was challenging to get started, but she stuck with it.

“There were days when my feet felt like lead, my hands were too cold, or I couldn’t get out of bed,” Karen explained. “But even in those moments, running was a privilege. I ran because I could. I was alive, healthy, and breathing of my own accord – things I desperately wanted for my father. I wasn’t the one in serious condition, suffering severe right-side paralysis, unable to swallow, walk, or breathe on my own.”

A woman points to her time on the marathon finish-line clock after running in honor of her father living with a brain tumor.

After a successful half marathon, Karen set her sights on completing a full marathon as a member of the Gray Nation Endurance team. The challenge of training for a 26.2-mile race combined with the daily practice of getting out of her parents’ house helped her manage the overwhelm of being a caregiver.

“Running was my medicine for caregiver burnout,” Karen said. “This was a time that felt overwhelmingly dark and uncertain. The problems we were facing were not going to be solved in a day, a week, or even a year. I think that’s why I turned toward running. I needed something concrete to help recenter and ground myself through a lot of that darkness.” 

Not only was training personally beneficial, but Karen also found community in fundraising. It was meaningful to connect other families with resources to help them navigate the medical circumstances that come with a brain tumor diagnosis. 

“The word I would use to describe this whole experience is perfect,” Karen said. “I am so proud to be my father’s daughter. Even in his suffering, he still finds ways to grant me opportunities of joy, love, and laughter. The cherry on top was when people would see my GNE shirt and tap my shoulder to say, ‘Good luck! See you out there.’ It felt good to have everyone rooting for me and him.” 

Register for the 2024 TCS NYC Marathon

Put meaning behind your miles and find connection with other members of the brain tumor community when you apply to run in the 2024 TCS NYC Marathon as a member of NBTS’s Gray Nation Endurance team. 

“I could tell we’ve all been impacted,” Karen said of her GNE teammates. “We all understand what it means to be in this little community, and it felt like such a safe space. As a 25-year-old caregiver, I am grateful to my entire community, who have shown up the way they can, but any traumatic experience can feel quite isolating sometimes. It felt validating and powerful to be part of a group that really understands the depth of your experience.”

Runners on the GNE team will receive an official race entry, GNE swag, a personal fundraising page and tools, a Facebook group for the team, and monthly Zoom calls to find community and talk training tips. 

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