By Molly Weisner
The diagnosis
Valerie Tú-Uyên Nguyen is a survivor of childhood cancer.
She was not diagnosed with osteosarcoma, but her 13-year-old sister was. Valerie never went through rounds of chemotherapy, but Cecilia did. Accepting IVs and injecting blood thinners – and marveling at the posy of bruises that bloomed – was never part of Valerie’s routine, but it was for Cecilia.
When her sister got diagnosed in March 2013, Valerie was in high school in Northern Virginia. However, instead of homecoming dances and football games, she had doctor visits and coaxed meals through nausea. It was sifting through treatment plans for what science considered a rare form of cancer, but Valerie and her family knew it too well.
Four years later, at 2 a.m. on a school night, Valerie heard a rapt knock on her bedroom door. It was Valerie’s mother saying curtly, “it’s time.” It was the sleep in her eyes that’d be washed out by tears, and Valerie’s “calloused feet [touching] the cold, midnight floor.”
Departing from Cecilia
When Cecilia died that morning, Valerie would be on the list of the family who survived her.
What, then, did she survive? Maybe it was seeing her sister – who she said was bright and sassy – fade colorlessly into a girl who had too few sips of Ensure. Maybe it was losing an entire future of memories together or never getting blue Slurpees from 7-Eleven again.
“It was chaotic,” Nguyen said. While applying to colleges and preparing to graduate high school, supporting her sister was something few other teenagers had to juggle.
Nevertheless, as a junior at UNC-Chapel Hill, Valerie said she is not concerned with the “what ifs.” The 20-year-old biology student uses her platform in Chapel Hill to advocate for cancer research and the loved ones of those diagnosed with cancer.
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The lost story
“Often the story of childhood cancer is one of smiling bald children in sappy television commercials or wrenchingly painful memorials for those who died,” Nguyen said. The story of caretakers and families who fight cancer alongside those diagnosed are often lost. In the medical field, too, the search for the cure is sometimes muddled by ambition.
“A lot of times in research, people get caught up in really catty things, like who’s first author on the paper, or ‘Is this published in the most prestigious journal?'” Nguyen said. “But it really doesn’t matter. It matters who’s benefitting.”
Nguyen said she remembers sifting through treatment plans for her sister, getting a crash course bedside manner, and hospital etiquette by merely observing. Her intimate experience with healthcare motivates her to be empathetic and keep the patient-centered in every aspect, she said.
Part of that mindfulness comes from the moments in hospitals that were emotional instead of clinical. In her college admissions essay, Nguyen wrote about being the designated barf-bucket holder. Her sister derided her doctors for letting her parents feed her turmeric pills while more potent stuff was coursing through her veins.
“I think about it a lot,” Nguyen said. “And it’s something I want to make sure no one else feels. It lights a fire within me that won’t be put out.”
According to the American Cancer Society, about 11,050 children in the U.S. under age 15 will be diagnosed with cancer in 2020.
Those are odds Nguyen is willing to fight. Whether it is volunteering at pediatric oncology wards or researching at the UNC Lineberger Comprehensive Cancer Center, Nguyen said she finds strength in working directly with people.
Much of her philosophy on healthcare also comes from lessons Cecilia taught her.
“When my sister was sick, she would always make sure I was included,” Nguyen said. “As a sibling, everyone thinks you’re normal and keep it together for your family. But you’re also a kid; it’s not like you’re supposed to have it together.”
Never forgotten
Even today, in the quiet moments between reading her favorite Vietnamese poet or getting ready to attend Zoom class, Valerie thinks of Cecilia.
She thinks of her favorite color, blue, and how maybe she would have been a Tar Heel, too.
She thinks of their matching shaved heads after Cecilia cried because she could not style her weakening hair for school dances.
She thinks of the bird feather that drifted into her mother’s car window the day after Cecilia died and how it is preserved forever on her skin as a tattoo with her sister’s fingerprint.
And then it is back to work with equations and solutions, volunteer hours, and cold calls.
“It’s a lot of hard days and good days,” Nguyen said.
Nguyen said knowing the sacrifices made by her family remind her to look toward the future instead of the past. She calls herself the daughter of Vietnamese boat people. Her parents arrived as refugees in the U.S. to escape the war. Instead of one that she loved, her mother settled for a job to provide for her family.
“Literally, being here in the U.S. right where I am now is a complete chance of luck,” Nguyen said.
Being outspoken about her life’s challenges to advocating for others is something Nguyen said she had to learn. Asking for help and leaning on others for support — which she said is not often encouraged in the Vietnamese culture — came down to having friends and family she could talk to.
Finding support
Jeremiah Holloway met Nguyen during their first-year at UNC-CH. The two bonded simply from talking about the things college students manage on a day-to-day basis.
“I admire how honest and open Valerie is,” Holloway said. “She lets you know her thoughts on things and how she honestly feels.”
Ruth Samuel, a senior at UNC-CH and friend of Nguyen’s, said being able to talk about the burdens students carry is crucial because they are not always visible. Samuel also lost a sibling to cancer, and though she and Nguyen find healing in their academics and passions, the grieving process never truly ends.
“It’s not just a one-and-done,” Samuel said. “It’s a journey, and it’s a never-ending one.”
However, when Nguyen suddenly became the only sibling, she doubled down in her passions, plodding a way up and out of the grief that could bring her parents with her.
That is why, Nguyen said, even in high school, she was working internships at the National Institutes of Health and lobbying politicians on Capitol Hill for increased cancer research funding.
“It’s tragic, but I’ve been given a unique experience [to] compassionately care for people in a way that not many people can because they just haven’t been in those shoes,” Nguyen said. “It’s a motivating force for me.”
The academic rigor and competitiveness at UNC-CH do not always acknowledge the purely social challenges that bring its students to campus. Nguyen says she is pursuing a healthy future as a woman in medicine, but it is not about the resume padding.
“I care deeply,” Nguyen said. “It’s not always clear from the universe that I should be doing what I’m doing, but I want to do it.”
Edited by Aashna Shah