Lola was the youngest of three siblings, a cheerful and easygoing baby who seamlessly blended into her family’s life. With her big blue eyes, chubby cheeks, and bright smile, she was cherished by her older siblings, Toby and Maya, as well as her parents, Naomi and Aaron. The Blevins family enjoyed what seemed to be a perfect life, filled with the simple joys of parenthood. However, before Lola could even celebrate her first birthday, everything changed dramatically.
The initial signs of trouble were subtle. Lola had just begun daycare and was experiencing mild nausea and occasional fevers, which her parents initially attributed to a common stomach bug. But one Friday afternoon, Lola became unusually lethargic and started vomiting. Naomi and Aaron hurried her to the hospital, where they noticed more concerning symptoms: Lola was unwilling to use her left hand for feeding and her smile appeared slightly uneven.
Panic set in. After reviewing old photographs, Naomi and Aaron realized that these subtle changes had been occurring for weeks. Alarmed, the hospital performed a CT scan, which revealed the unthinkable. “The neurosurgeon told us, ‘There’s a tumor in there. It’s big and it’s deep,’” Aaron recalls. “Those words will never leave us.”
Lola underwent emergency surgery the next morning. Handing her over to the anesthetist was one of the most challenging moments they faced. Hours later, the surgeon returned with news that the tumor, roughly the size of a mandarin, had been removed as much as possible. Yet, Lola’s battle was just beginning.
Pathology confirmed the diagnosis: Lola had a rare and aggressive brain cancer known as ETMR (embryonal tumor with multilayered rosettes). The prognosis was dire. Without immediate high-dose chemotherapy, survival was nearly impossible. “They warned us that the chemotherapy would be extremely harsh, but without it, there was no chance of survival,” Aaron remembers.
The family’s struggle coincided with COVID-19 lockdowns, which added feelings of isolation and anxiety. Only one parent could visit Lola at a time, leading Naomi to spend long days and nights with her in the hospital, away from Aaron and their other children. Nevertheless, the family celebrated the milestones they could, cherishing small victories. Naomi fondly recalls spending Lola’s first birthday at home, grateful for those precious moments together despite the lockdown.
The treatment was arduous. Lola underwent six cycles of chemotherapy, each following a 28-day schedule. Halfway through, an MRI showed residual cancer, necessitating a second surgery. Chemotherapy continued, along with intensive physiotherapy and occupational therapy to help restore mobility on her left side. Naomi remembers heartbreaking moments, such as discovering clumps of Lola’s hair in her mouth as she attempted to feed herself. The physical and emotional toll was overwhelming.
After completing chemotherapy, the family opted for radiation therapy. For five weeks, Lola underwent daily treatments under general anesthesia, fasting each night beforehand. Despite the fatigue and stress, each session brought them closer to hope. On Christmas Eve, Lola finished her final treatment and returned home for the first time in months, a milestone the family treasured.
However, fate dealt a cruel hand. A routine MRI in February revealed concerning signs, and Lola’s condition quickly worsened. A seizure a month later marked the start of palliative care. Naomi and Aaron focused on creating moments of love and connection, taking the family for a special weekend getaway and capturing precious memories with the help of a friend.
On March 26, Lola passed away peacefully at home, surrounded by the family that had fought so hard for her. Naomi and Aaron were devastated, mourning not only for Lola’s lost future but also for the innocence taken from their other children. “It hurts me, but it warms my heart when the kids talk about her,” Naomi shares. “We strive to keep Lola very much a part of our family.”
Despite their profound grief, Naomi and Aaron have found purpose in Lola’s memory. They recently attended a talk by the Children’s Cancer Institute and were inspired by advancements in childhood cancer research. “We want to cure cancer. We want to contribute in some way, in her memory,” Naomi expresses. “We can’t save Lola, but we can help in some way.”
Lola’s story serves as a poignant reminder of life’s fragility and the remarkable strength found in love and family. In her short life, she faced pain, uncertainty, and fear with a bravery and resilience that belied her age. The dedication of her parents, the sacrifices of her siblings, and the small moments of joy they created amidst the crisis illustrate how love can endure even in the darkest times.
Lola’s legacy extends beyond her battle with cancer; it is a call to action. Her story inspires hope, awareness, and a commitment to improving outcomes for children facing similar challenges. It highlights the significance of family, the value of small moments, and the lasting impact one precious life can have.
Even as her parents and siblings navigate life without her, Lola remains a part of them — in their memories, in their stories, and in the efforts they now dedicate to childhood cancer research. Her light, though brief, continues to shine, reminding the world of the courage and love that even the smallest among us can bring.
