Not every blood cancer diagnosis is obvious—especially in kids. When three-year-old Sofia started spending more time on the couch watching movies, her parents didn't think it was anything out of the ordinary. But soon it became all Sofia wanted to do, and she seemed to be resting much more than usual.
"Sofia is an extremely active and physically capable child, so this was definitely weird," her mom, Janaye, shares. Then Sofia developed a series of fevers, and her parents took her to their family doctor, expecting an infection or low-level virus. A routine blood test gave them all a shock: the normally bubbly three-year-old's blood cell counts were way off.
"[The doctor] ran the test three times to be absolutely sure, but something was very, very wrong," Janaye says.
After more blood tests in the emergency room, Janaye can't forget the doctors' expressions when they shared the news with her husband and Sofia's dad, Gary: Sofia had acute lymphoblastic leukemia (ALL). "I couldn't find any words," she recalls. "From there, our existence was permanently altered." Sofia moved into the hospital's oncology wing, and her parents began the intense process of managing her cancer care.
It took time. Sofia and her parents had to follow isolation protocols for nine months as she made her way through treatment. "Each phase had its own little horrors that came with it," Janaye explains. "But we were lucky to be moving forward with treatment at all." Most weeks, the family spent at least half their time in the hospital.
"We became cancer parents," Janaye says. "We learned how to navigate the health system. How to get things done. Which doctor needed to be told what, and when. How to manage depression and anxiety, even when it felt impossible."
While Sofia's diagnosis was "traumatic" and "life-changing," her parents are still moved by the wave of support and community it brought their way. Not just from loved ones, but also from old acquaintances, new-to-them organizations like The Leukemia & Lymphoma Society (LLS), and even complete strangers.
It's why they're sharing Sofia's story as this year's Light The Night Honored Hero. They attended their first Light The Night as a family in 2023 and had a "great time," according to Janaye. "Sofia felt so loved," she recalls. "Everyone she knows came to support her."
Sofia's parents want other families to have access to community in the chaos of a blood cancer diagnosis—because that's what LLS and Light The Night offered them in their toughest moments. "LLS not only makes sure you know people care about your child's wellbeing but also takes the time to reach out and understand what you're struggling with," Janaye shares. "They built this organization just for people like us."
Sofia is still in the maintenance phase of her treatment, but she was able to enroll in school for the first time last year—a huge milestone. If all goes well, she'll finish active treatment as early as the end of 2025. Her parents are worried about relapse, a very real concern for kids with leukemia. But they're also looking forward to their next Light The Night, and a time when Sofia can be with her friends and go to the park again—cancer-free.