Nora’s Journey with Pediatric Low-Grade Glioma (pLGG)
At just 11 years old, Nora is bursting with energy and ambition. Ask her what she wants to be when she grows up, and she’ll give you a list as impressive as it is diverse: a singer, an actor, a teacher, a therapist for kids who’ve gone through what she has, or maybe even president. This spark and determination shine through in everything Nora does, whether she’s acting, singing, hanging out with friends, or her mom Heather, whom she calls her biggest supporter.
Four years ago, Nora’s life took an unexpected turn while on vacation with her family in Shohola, Pennsylvania. Sitting by the lake with her grandma, reading The Black Stallion, she told her grandma she couldn’t see the words on the page. Soon after, Nora complained that she couldn’t read the lyrics during her piano lesson, even with her mom’s glasses. That’s when Heather rushed their family home to Manhattan for a doctor’s appointment.
With one MRI, their family’s life was turned upside down. The doctors told Nora she had a “bump in her brain,” which was in fact the most common type of brain tumor diagnosed in children, called a pediatric low-grade glioma or pLGG.
A Pie for Every MRI
Nora quickly learned the ins and outs of having a brain tumor. She faced frequent MRIs, EKGs, eye appointments, and blood tests—sometimes all in one day. To make it more bearable, she and her mom came up with a song for MRI day: It’s MRI day, it’s not my day, but if I had my way, it would be pie day. Now, every MRI day ends with pie, her favorite being her mom’s homemade chocolate cream pie. “It tastes amazing,” she says, savoring the memory of turning a difficult day into something special.
Throughout her two-year treatment journey, Nora faced many challenges, including adjusting to life with severely impaired vision as a result of the tumor’s pressure on her optic nerve. Despite all this, she never lost her sense of humor or determination. Nora recalls, “since the beginning, I was like, I’m gonna prove them wrong. I’m gonna get through this. And after two years of MRIs, blood draws, doctor’s appointments, EKGs, Echoes, taking pills every night and every morning…I’m like look at me now. I did it.” At this point, Nora’s vision is “a lot better” as she has gained most of it back and is able to wear glasses that are really helping.
Nora’s Message of Hope
Through it all, Nora was surrounded by love and support, from her “doctor crew”, family, and from her friends. They were always there to wish her luck and cheer her on, but what meant the most to Nora was that they didn’t treat her any differently. “I didn’t want to be known as ‘the friend who had cancer,’” she explains. “I just wanted to be Nora, their cheerful friend.”
Her family, especially her mom, played a huge role in her journey. From helping her learn how to take pills to making MRI days less frightening, Nora’s mom was by her side every step of the way. Now that she’s come through her treatment, Nora has some advice for other kids going through similar challenges. “Before I say it’s going to be okay, I would just listen to what they want to tell me,” she says thoughtfully. “And if they want feedback, I’d tell them, ‘You got this. You’re a warrior. It’s going to be tough, but there will be people who help you along the way.’”