Written by his mother, Rachel
When Nicole Barros looks at her daughter, Lyanna, she sees a bright, brave, fun-loving five-year-old who has fought through more in her short life than most could imagine. Today, Lyanna is thriving in Pre-K, full of sweetness, resilience, and a courage well beyond her years. But her journey to this moment has been nothing short of extraordinary.
Nicole first noticed something unusual when Lyanna was just two years old. A white glow began appearing in photos of her left eye, something she didn’t understand at the time. Just a few weeks later, a daycare teacher noticed the same glow with the naked eye. Lyanna had also begun rubbing her eye and squinting more than usual. Concerned, Nicole and her fiancé, Phillip, turned to Google, where they learned the glow could be a sign of something much more serious.
They were determined to find answers. A close friend connected them with specialists at Bascom Palmer Eye Institute in Miami, close to their home in Ft. Lauderdale. In February 2023, they met with Dr. Basil Williams. Following an exam under anesthesia, they received the news every parent fears, Lyanna had bilateral retinoblastoma (RB), and the cancer in both eyes was advanced. Despite only one eye showing the glow, both were affected.
Doctors began treatment immediately, starting with intra-arterial chemotherapy (IAC) and cryotherapy in hopes of saving Lyanna’s eyes. Four rounds later, however, dangerous “floaters” appeared in her left eye. Fearing the cancer could spread beyond the eye, the medical team recommended enucleation. In September 2023, at just two years of age, Lyanna bravely underwent surgery to remove her left eye.
Nicole and Phillip hoped this would be the end of their daughter’s cancer journey.
But two weeks later, everything changed.
Lyanna became unusually tired, stopped eating, and eventually spiked a fever. At the emergency room, bloodwork revealed alarming abnormalities. After urgent MRIs and scans, doctors confirmed the devastating truth, the cancer had spread throughout her body. It was now in her brain, spine, bone marrow, blood, liver, most everywhere.
Nicole describes this moment as the darkest of her life but even in their fear, the family resolved to fight. Lyanna immediately began four rounds of intensive systemic chemotherapy. This aggressive treatment left her extremely ill. She lost her hair, battled relentless side effects, and at one point required admission to the Pediatric Intensive Care Unit.
Her medical team knew she would need something more to save her life and recommended a stem cell transplant. Under the care of Dr. David Crawford and Dr. Warren Alperstein whom Nicole lovingly calls her “go-to guy” and the person who kept her steady when everything felt impossible, Lyanna underwent her transplant in February 2024.
Miraculously, Lyanna began to heal.
Since her recovery, she has shown no signs of new disease. She continues to be monitored closely with monthly bloodwork, EUAs, and MRIs every three months. Her right eye now has 20/20 vision, and her prosthetic eye looks beautifully natural. With Lyanna’s appearance and upbeat energetic demeanor, most people never realize she has endured such a difficult journey in her short life. Today, Lyanna is a bright light in her family’s life. She is loving, respectful, impossibly brave, and remarkably unafraid of the doctors who have become a familiar part of her world.
Nicole shares their story to help other families recognize the earliest signs. She knows firsthand how quickly retinoblastoma can advance. She wants parents to trust their instincts, even when the signs seem small, because children often cannot articulate when something is wrong. She also hopes their experience shows that even when the cancer spreads beyond the eye, there is hope. Treatments are evolving. Children are resilient. And families can get through even the darkest chapters with love, vigilance, and determination.
“We want other parents to know,” Nicole says, “that paying attention to the little things could save your child’s life. And even when things look impossible—there is still hope.”
