When joining a clinical trial, family becomes part of the team

Weston is a quiet 11-year-old with a quick wit, especially when he makes a joke at the expense of his older sister. It is the kind of ordinary little-brother moment his family treasures.

Weston had very few of those moments when he was diagnosed with T-cell acute lymphoblastic leukemia (T-ALL), then brought to St. Jude in critical condition. He was enrolled in the St. Jude INITIALL clinical trial, which studies a new approach to pediatric leukemia care. This clinical trial is designed to help doctors match children with the treatments most likely to help them.

“Thankfully, it seems to be working, and Weston is in remission now,” said his mother, Joni. “But he has to continue the treatment for two and a half years, which is hard. He can’t go back to school with his friends yet, and he’s restricted from a lot of other activities, but the people at St. Jude are helping us emotionally.”

Joni’s first conversation with Weston’s St. Jude physician, Seth Karol, MD, MSCI, Department of Oncology, who runs INITIALL, highlighted this type of emotional care beyond the cancer treatment itself.

“One of the first things Dr. Karol told me was ‘this was not your fault,’ which was a thought that had haunted me since learning Weston’s diagnosis,” Joni said. “He’s very comforting, but he’s also honest with you about the situation.”

That combination of compassion and expertise helped Weston’s family feel supported as they entered a trial built on years of St. Jude research. Throughout decades of research and care, scientists at St. Jude have collected genetic information and clinical outcomes data to understand who will respond to the St. Jude-created Total Therapy approach. Total Therapy raised survival rates for childhood cancer from below 20% to above 80%. INITIALL uses that knowledge to guide clinicians to decide what treatments children with leukemia will receive. That guidance led to the addition of an extra round of chemotherapy as part of Weston’s treatment on the SJALL23T trial, a trial that uses the information from INITIALL to modify therapy for children with T-ALL.

However, no matter how well planned a clinical trial is, unforeseen circumstances can arise. Families like Weston’s are research partners, navigating the realities of the trial with the care team as they encounter and overcome the unexpected. This type of clinical research shows the close collaboration and day-to-day support between families and care teams.

“Dr. Karol and Weston’s care team included me in every morning meeting during his in-patient care,” Joni said. “They asked me to come join them so I could know what was going on, then we all discussed what would be best to do.”

Even in an innovative clinical trial, parents like Joni have valuable day-to-day information that helps the care team and researchers. While those researchers will continue to learn from INITIALL over time, Weston’s family experience can already give insight into INITIALL’s real-world impact and promise for other children like Weston.

“Our little boy still being here is a miracle,” Joni said. “His struggle has shown us what’s important; I want to spend as much time with my children as possible and give them all of the experiences they want and need, because that’s what really matters.”