When Cecilia Crockett first arrived at Riley Children’s Hospital, she quickly became known to everyone.
“She made such a big impact in the hospital,” said Jignesh Tailor, MD, PhD, pediatric neurosurgeon and an assistant professor of neurological surgery at the Indiana University School of Medicine.
“She was a very sweet girl who was wise beyond her years and grateful for all the little things in life including her doctors and family, who made this (Riley) their second home.”
In April 2022, Cecilia had a doctor’s appointment for a normal check-up. The 4-year-old’s eyes weren’t tracking together, and she was having headaches. Her parents, Benjamin and Allison Crockett, thought she might need glasses.
The parents soon learned that their daughter had a tumor the size of a golf ball in the geographic center of her brain.
Cecilia was diagnosed with pineoblastoma, an aggressively rare brain tumor that originates in the pineal gland. According to the National Cancer Institute, pineoblastoma accounts for fewer than 1% of childhood brain tumors.
Symptoms include pressure in the skull, headaches, nausea and abnormal eye movements.
While treatment options like surgery, radiation and chemotherapy are used to reduce tumor size and manage symptoms of the tumor, there is no universal cure for pineoblastoma.
By the time Cecilia’s tumor was discovered, it had already spread throughout her brain and spinal cord.
“A few weeks after recovering from the first brain surgery, Cecilia was released home for a short break before returning to start chemotherapy,” said Benjamin and Allison Crockett. “It was only 15 months after that first diagnosis that we held her tender hand and felt her heart beat for the last time.”
Cecilia passed away July 19, 2023. She was 5 1/2 years old.
“Cecilia brought so much joy into our home and life, and it was unthinkable to lose her,” the Crocketts wrote in a pamphlet promoting Riley’s brain donation program. “We chose to donate Cecilia’s whole brain in the hopes that it would make a difference for other families who may have to face the unthinkable.
“Despite this tragedy, we have found support, meaning and fulfillment in watching her donation push forward scientific research to help save more children’s lives.”
That decision became the foundation for the Pediatric Neuro-Oncology Research Fund. Seeded by a $25,000 gift to the Riley Children’s Foundation from the Crockett family, the fund supports research aimed at understanding how pediatric brain tumors form, evolve and resist treatment.
The funds have allowed Tailor and his research team to study tumor samples obtained from Cecilia’s donated brain tissue. This research will provide valuable insights into the molecular mechanisms behind pineoblastoma and help guide the development of new therapies.
“These tumors naturally find ways to progress — that’s the challenge,” Tailor said. “We need to identify how to stop that progression by understanding the molecular mechanisms driving it.”
One of the biggest challenges in this work is rarity, Tailor said. Tumors like pineoblastoma are uncommon, and researchers often have limited tissue samples to study.
“Cecilia’s donation provided a rare opportunity to examine how a tumor changes over time,” Tailor said. “We now have access to tumors that have progressed, allowing us to better understand why they advance and why treatments may fail. One focus of our work is examining different time points to see how the tumor has changed — in its DNA, gene expression and cellular evolution over time.”
The Pediatric Neuro-Oncology Research Fund has also helped build the next generation of researchers. It supports the work of postdoctoral fellow Titto Augustine, PhD, and medical student Ken Virgin.
Virgin served as the inaugural Crockett Scholar, working in Tailor’s lab to study the biological pathways that drive tumor growth.
“If we can understand why these tumors form and grow,” Virgin said, “we can figure out how to stop them.”
Virgin’s work focused on identifying molecular changes and potential drug targets — some of which may already exist in therapies approved for other cancers.
“This kind of research can drive real change,” Virgin said. “For example, our recent study on craniopharyngioma — a type of pituitary tumor — identified five FDA-approved drugs, already used for other cancers, that could potentially treat it. This was previously unknown. The importance of our preliminary work with craniopharyngioma is that we have evidence to say our methods are useful in identifying targets for pediatric brain tumors.
“Over this year, we have collected tissue samples from across the country and are now conducting similar experiments in pineoblastoma. We’ve made significant strides in understanding these tumors. That’s what makes this all so exciting.”
More than 80 supporters have contributed to the Pediatric Neuro-Oncology Research Fund, bringing its total to more than $840,000 — about 84% of its $1 million goal.
“I want to thank the Crockett family and everyone who has contributed for their generosity,” Tailor said. “All of this support is going toward something real. We are making progress.”
For Cecilia’s family, that progress is part of a lasting legacy.
“One thing Cecilia said to her dad during all of this was, ‘Will you promise you won’t forget me,’” Tailor said. “We all want Cecilia to know she will never be forgotten. We are committed to finding more treatment options for other children fighting brain-related illnesses.”
To contribute to the Pediatric Neuro-oncology Research Fund, please click here or contact Kate Cohen, Riley Children’s Foundation major gift officer, at kcohen@rileykids.org or 317-727-1117.
