Anastasia B. | 2026 All-Star | Connecticut Children's Foundation

Living Beyond Neuroblastoma: Anastasia’s Story

When Anastasia was not yet two years old, her father, Randy, noticed a lump beneath her ribs. Her mother, Kayla, brought it to the attention of Anastasia’s doctor during an appointment. An ultrasound was scheduled to investigate.

That ultrasound changed everything.

“They told us, ‘Don’t leave. The doctor needs to talk to you,’” Kayla recalled. She was told to take Anastasia straight to Connecticut Children’s. Anastasia’s father, Randy, left work immediately and drove them to Hartford.

MRI reveals a tumor

When they arrived in the Emergency Department, Anastasia was whisked away for more testing. “We still had no idea what was going on,” Kayla said. After her tests were completed, Connecticut Children’s hematologist-oncologist Andrea Orsey, MD, showed Kayla and Randy the MRI image. The lump under Anastasia’s ribs was a tumor.

An MIBG scan, a nuclear imaging test used to diagnose neuroendocrine tumors, confirmed the diagnosis. Anastasia had neuroblastoma, a rare cancer that develops in nerve tissue and primarily affects children under the age of six.

Anastasia sitting in her hospital gown eating snacks

Chemotherapy, then a setback

At first, her cancer was considered intermediate risk. The plan was six months of chemotherapy—no radiation, no additional procedures beyond placing a central line. Her treatment began immediately.

Midway through treatment, testing revealed devastating news. The tumor had grown and was bleeding, pulling Anastasia’s platelets into it instead of circulating through her body. Her diagnosis was now high-risk neuroblastoma, and to beat it she would need to go to Boston for a bone marrow transplant.

Living apart for a bone marrow transplant

Because Anastasia was immunocompromised and couldn’t go to daycare or stay with a sitter, Kayla had left her job several months earlier, when Anastasia was initially diagnosed. A trip to Boston was one more hardship for the family—they would have to temporarily live apart. On January 27, 2023, Randy drove Kayla and Anastasia to Boston, then returned home to take care of their two older sons.

After four days of intensive chemotherapy, Anastasia received the transplant. It would be another month before she and Kayla could go home to Connecticut. In total, she endured five rounds of chemotherapy and surgery before the transplant, and then an additional six rounds of chemotherapy to eradicate her tumor.

Anastasia writing the alphabet on a whiteboard

Preventing relapse

Even after the transplant, Anastasia’s treatment wasn’t over. To reduce the risk of relapse, she received immunotherapy, a powerful treatment that helps the immune system recognize and attack any remaining cancer cells too small to be seen on scans.

She also began taking DFMO—difluoromethylornithine—a medication that reduces the risk of recurrence in patients with high-risk neuroblastoma. She received DFMO as part of a clinical trial offered at Connecticut Children’s through the Beat Childhood Cancer Research Consortium. In December 2023, DFMO received FDA approval, an important milestone that expanded access to this therapy for children who need it.

Ongoing care with audiology and cardiology

Because the intensive chemotherapy left her with hearing loss, Anastasia receives ongoing care from Connecticut Children’s Audiology Division. Her heart health is monitored through Connecticut Children’s Center for Cardio-oncology and Innovation for Cancer Survivors with routine echocardiograms and EKGs.

Starting school and being a kid

Today, Anastasia is five and life is gradually returning to normal. She attends full-day kindergarten, where her favorite thing about school is her teacher. She’s back to being a kid who loves the Moana soundtrack, tacos and chicken nuggets, and football like her older brothers. “She’s definitely a tomboy, growing up with two older brothers,” Kayla said.

Despite all that she’s been through, Anastasia remains strong, brave, and happy. She’s also obsessed with toy doctor kits. “She’ll either get older and hate coming to the hospital or end up working in one,” Kayla said.