Defying brain cancer is a family effort
Ever get a song stuck in your head that you can’t get out? What about multiple songs, looping over each other and mixing in and out, constantly in the background? That’s what Nolan Hsu, an active, otherwise healthy 30-year-old, started experiencing in March 2021. It was an odd occurrence, to be sure, but not something even his wife, Kate, or parents, Felix and Becky, thought was a big concern at first. Knowing his body, however, Nolan spoke with his doctor and had an MRI, which revealed the overlapping songs in his head were auditory seizures. Nolan had a brain tumor: stage II oligodendroglioma.
“Brain tumors can exhibit in so many different ways—it could be this odd music overlapping or it could just be a headache,” Nolan says. “I was extremely lucky, and lucky those auditory seizures were my initial minor symptoms.”
Nolan and his family quickly sought out Patrick Wen, MD, director of Dana-Farber Cancer Institute’s Center for Neuro-Oncology, for Nolan’s treatment. Thanks to the early stage of Nolan’s tumor and to his skilled team, his tumor was fully removed during a craniotomy—a 7-hour surgery throughout which Nolan was awake and speaking with the surgeon, Linda Bi, MD, PhD, and rest of the team, to make sure they weren’t cutting too deeply, potentially affecting his language capabilities.
“Because of where the tumor was, I had a lot of trouble after the surgery pulling different words out of my head and communicating, but I didn’t have to undergo chemotherapy or radiation treatment because the tumor was cleanly removed. I was very lucky in that way,” Nolan says.
“Dr. Wen understood that Nolan was a relatively healthy 30-year-old and took his lifestyle into consideration in the treatment plan,” adds Kate. “He knew we could have done chemo too, but since the surgery looked like a full resection and knowing Nolan’s active life, we didn’t have to. The treatment plan was really tailored to him, which we both appreciated.”
Although Nolan’s tumor didn’t require further treatment, he and his family were surprised by the lack of newer treatment options for tumors like his, with few therapies approved since the 1970s and no targeted therapies currently available. They were motivated to start the Nolan Hsu Brain Cancer Research Fund with a sizable donation to help Dr. Wen and his team find new avenues to treat this disease, to help other patients like Nolan.
While many may consider brain tumors rare, particularly in young people like Nolan, the Hsu family knew prior to Nolan’s diagnosis that isn’t always the case. Becky, Nolan’s mom, had her own brain surgery at 27, and once Nolan was diagnosed and he and Kate started sharing the news with friends, they were surprised to find so many connections to others with brain tumors or surgeries.
“Sadly, many people die from brain tumors since they are often diagnosed later, so there aren’t that many vocal advocates to spread awareness,” Becky says. “But once you’re diagnosed, you realize that it’s not that uncommon, although it’s rarely talked about.”
“Brain tumors are an underfunded area, with first-line therapies being treatments that were approved in the 1970s,” adds Felix. “We want to increase funding, and funding can increase with awareness.”
To work toward both of their goals, awareness and funding, the Hsu family is organizing several events for Dana-Farber and the Jimmy Fund to support their new fund, which they hope will allow Dr. Wen and his team to investigate several new areas for treatment, to see what drugs could work and whether Nolan may be a candidate for one of them down the line. Nolan and Kate, who live in Somerville, Mass., just outside of Boston, have set up several local events, including a dinner at a restaurant, Barcelona Wine Bar, in recognition of Brain Tumor Awareness Month. The restaurant holds a special place in their hearts: It was where they went on their first date, where Nolan proposed, and where the two had a small, private wedding ceremony on September 6, 2020, after their larger wedding plans were postponed due to the COVID-19 pandemic. The couple was also able to travel to the real Barcelona, in Spain, in December 2021—a much-needed respite after a challenging year of Nolan’s diagnosis and treatment, amidst the pandemic.
In Florida, where Nolan’s parents live, Felix and Becky also organized their first-annual fundraising event on May 1, to bring their community together, have fun, and support Nolan and other patients. And Nolan’s sister, Lauren, spearheaded a GoFundMe effort for Nolan and Kate to help with unanticipated expenses during his treatment.
“This fund is a family effort, and we’re all incorporating our hobbies and what we love to fundraise,” says Kate, who is also working to organize a charity cycling class to raise funds. She and Nolan will be joining the Boston Marathon® Jimmy Fund Walk presented by Hyundai this fall too, to further bolster their efforts and bring their community together. “We are in this for the long run and committed to finding a new treatment in the next 10 years.”
“It’s been a while since there have been new treatments, and obviously chemo and radiation are not fun,” Nolan says. “I want to be able to advocate for other patients, because I was lucky identifying this tumor at an earlier stage, and a lot of my friends were not. I’m hoping in the next few years, through our fundraising, we’ll be able to find a less invasive treatment that is as or more effective than chemo and radiation, so treatment is less intrusive with fewer side effects.”
Since his surgery, Nolan has continued to have some language-processing issues, but he is taking steps every day to defy his cancer.
“I didn’t want cancer to take over everything in my life,” he says. “I knew I was going to be impacted after the surgery, so I set a couple of goals for myself, knowing my brain would be a little bruised.”
Since his surgery, Nolan has achieved all of his goals: Reading a novel cover-to-cover, running a board game night with his friends once a week, and holding conversations with his loved ones. “To me, that’s defying cancer—setting goals and working toward them, not letting cancer dominate my life.”
Interested in starting your own event to support Dana-Farber and the Jimmy Fund? Learn how you can become a Jimmy FundRaiser!
Support patients like Nolan by joining The Dana-Farber Campaign, our ambitious, multi-year fundraising effort to prevent, treat, and defy cancer. The Dana-Farber Campaign will accelerate the Institute’s strategic priorities by supporting revolutionary science, extraordinary care, and exceptional expertise. As a community, we have the power to create a more hopeful, cancer-free future—in Boston and around the world. Together, we can defy cancer at every turn. Learn more about The Dana-Farber Campaign and how you can get involved at DefyCancer.org.