Alexis
For Margarita Tolentino, the shadow of retinoblastoma has loomed large throughout her life. Diagnosed with the rare eye cancer at just one year old, Margarita’s early years were marked by a series of challenges that few could imagine. Her journey began when her mother noticed peculiar symptoms: “My eye would shine differently, look red in pictures, and I was getting sick often.” Lacking access to specialists in their small Mexican town, her family traveled to Mexico City for answers. There, doctors confirmed the diagnosis, and her left eye was removed.
Treatment in the 1980s was harsh and grueling. Margarita recalls traveling hours to receive radiation and chemotherapy, often enduring debilitating side effects: “I couldn’t keep food down, I’d throw up, or have diarrhea.” She vividly remembers walking to the hospital after an earthquake in 1983, determined to complete her treatment. Despite enduring nearly 15 years of surgeries—some necessary, others a product of inadequate resources—Margarita carried on. At age 20, she told her mother, “I don’t want any more surgeries.”
Her diagnosis came with a warning: if Margarita ever had children, there was a near certainty they would inherit the same disease. For years, she believed motherhood wasn’t in her future. But when she moved to the United States and met her husband, she shared her health history openly, and together they decided to build a family. Against the odds, Margarita gave birth to two children, Alexis and Ana.
When Alexis was born, he appeared healthy. But three months later, Margarita noticed something eerily familiar. “I saw the same white shine in his pupil that my mom saw in mine,” she recalls. Pediatricians dismissed her concerns, insisting Alexis was fine despite his frequent crying and unusual eye reflections. Margarita persisted, fighting for referrals to specialists. Finally, at six months old, Alexis was diagnosed with retinoblastoma.
The news hit hard. Margarita had prepared herself for this possibility, but hearing the diagnosis was still devastating. Alexis began chemotherapy and radiation immediately. By age three, his left eye was removed to prevent the tumor from spreading to his brain. Despite the treatments, a tumor was later discovered in his right eye. Radiation helped shrink it temporarily, but it eventually grew back. In 2022, doctors removed the second eye.
For Alexis, losing his vision was a gradual process, making the adjustment less traumatic. “He stopped being able to see at age three,” Margarita explains, adding that he is a remarkably resilient boy. Even so, the emotional challenges were significant. Early in school, Alexis refused to speak, withdrawing from his peers. But through the Nevada Children’s Blind Association and virtual classes during the pandemic, he began to come out of his shell. By fourth grade, Alexis felt comfortable speaking and connecting with others, marking a turning point in his social development.
Candlelighters also played a crucial role in their journey. Margarita recalls being introduced to the organization through Dr. Ricci at Cure 4 The Kids. “They’ve helped us in so many ways,” she says. From providing financial assistance for travel and food during treatments in California to emotional support and guidance through English documents, the nonprofit has been a lifeline for the family. Alexis, now an active participant in Candlelighters events like the Halloween Bash, treasures these moments of joy and normalcy.
Looking ahead, Alexis is embracing new friendships through school, where he enjoys playing games and learning braille. Margarita, reflecting on their shared journey, offers this advice to others facing similar battles: “Have faith. Little by little, with care and determination, everything will be okay. Always maintain the will to live and to move forward.”
For Margarita and Alexis, the challenges of retinoblastoma have only strengthened their bond and their resilience. Their story is a testament to the enduring power of hope, persistence, and the unwavering support of a loving family.
