Hope for Hunter: A Family’s Choice to Give a Clinical Trial a Chance

When Hunter Kahl was eight months old, life looked like it does for many families with a growing baby. He was learning, exploring, and discovering the world around him.

Then he started having fevers.

The first time, his parents thought it was from teething. That week, the fevers would improve and then return. They gave him Tylenol, but it didn’t work as they expected.

His mother, Marisa, remembers:

The next morning, something felt different. Hunter woke up and wasn’t moving his leg. At first, I thought he had hurt himself. He had been playing the day before, and I wondered if he had injured it somehow. I rushed him to the hospital in Hornell because I knew something was wrong.

After a long day of X-rays at St. James Hospital—the hospital closest to the family’s home in Hornell—the orthopedic surgeon came to share the results. The images did not show a broken bone, but the doctor told Marisa and Terry (her husband and Hunter’s dad) that Hunter could have an infection in his leg. The doctor recommended doing a full blood workup to find the cause.

That bloodwork changed everything.

Hunter’s white blood cell count was 600,000. A normal white blood cell count for an eight-month-old baby is around 5,000 to 19,000.

Marisa recalls:

Within hours, we went from worrying about a fever and a possible leg injury to facing a diagnosis we never imagined.

Hunter was transferred to University of Rochester Medicine’s Golisano Children’s, where doctors confirmed that our eight-month-old son had acute lymphoblastic leukemia (ALL).

Our world changed overnight.

Making a Difficult Decision

Once he was diagnosed, Hunter immediately began receiving antibiotics to help protect him from infection while doctors completed additional testing and developed his cancer treatment plan.

The next day, pediatric oncologist Carol Fries, MD, talked with Marisa and Terry about an international clinical trial available for infants with ALL, although the trial was not yet open in Rochester.

The study combined standard chemotherapy with two newer therapies: blinatumomab, an immunotherapy treatment, and venetoclax, an oral targeted therapy medication approved for use in adults with some other types of leukemia but being studied in combination with chemotherapy for infants.

Marisa reflects on what it felt like to consider a clinical trial:

At that moment, we were overwhelmed. As parents, every decision you make is about protecting your child. Being asked to consider a treatment that was still being studied felt frightening. It felt too scary. At first, we thought we might say no.

The thought of taking a risk with something new was terrifying. We worried about making the wrong choice and wondered whether we would always question our decision.

Dr. Fries took time to answer their questions, explain the research, and help Marisa and Terry understand what the trial meant. She shared information about how other infants had responded to similar approaches and reminded Marisa and Terry that Hunter would continue receiving excellent care whether they chose the trial or not.

Over time, they began to see the opportunity differently:

This wasn’t just about trying something new. It was about giving Hunter access to a treatment that could potentially help him—and possibly help other babies diagnosed in the future.

That was what helped us decide.

We said yes.

Opening the Clinical Trial—Quickly

Clinical trials can take weeks or even months to open, but Hunter needed treatment within days.

Dr. Fries felt that with help from colleagues at Wilmot Cancer Institute and Golisano Children’s, they would be able to open the study at University of Rochester Medicine and get the new medications in time for Hunter’s treatment needs.

The trial was important because it meant Hunter would be able to more easily receive the new immunotherapy treatment that has significantly improved outcomes for infants with ALL. Historically, older children and adults with the same cancer fare better than infants. But this new treatment, blinatumomab, has helped improve the chances of infants never having their leukemia come back from about 40 percent to more than 85 percent.

“This immunotherapy has revolutionized curability for children with B-cell ALL, including infants,” Dr. Fries says. “We are in a whole new era.”

Dr. Fries immediately rallied the teams at URochester Medicine who would need to make this possible, particularly colleagues at Wilmot’s Clinical Trials Office (CTO).

To get months’ worth of work done in mere days, the team broke down the tasks and worked relentlessly, under the guidance of Jamie Littleton, MSN, RN, CRN-BC, CCRC, director of Clinical Operations & Research Nursing at Wilmot.

She coordinated with two regulatory specialists to get legal approvals from multiple parties. This process often takes days of back-and-forth, but Littleton and her team pushed to complete it in hours.

They also coordinated with IT colleagues to build the treatment protocol in the electronic medical record system and worked with the pharmacy team to ensure the first clinical trial medication they would need, venetoclax, arrived on time. Joy Snyder, PharmD, MPH, expedited the process, even calling leaders at the Pharmaceutical Management Branch of the National Cancer Institute to explain the urgency.

Many of these people never met Hunter face-to-face, but they all played a role in making his treatment possible.

“Every single person behind the scenes knew in their heart who this was for, and that care came through in every interaction I had with them,” Dr. Fries says.

Facing the Reality of Treatment

Once the clinical trial treatment began, life changed significantly for Hunter and his family.

They had hospital visits, blood tests, long drives, and many moments of uncertainty.

Living in Hornell meant making frequent trips to Rochester—about 73 miles away—for Hunter’s care. They bought a more reliable vehicle to travel through the winter months. They experienced blizzard conditions that made the drive difficult and required occasional hotel stays near Rochester to get Hunter to his appointments safely and on time.

At the same time, we were trying to keep life as normal as possible for Hunter and his older brother. Cancer became part of our daily routine, but Hunter was still a baby. He still wanted to play. He still wanted to smile. He still wanted to explore.

One moment we will never forget was when Hunter needed to take one of his medications that had a terrible taste. The care team worked with us to help him take it, and nurses and pharmacists gathered around him, encouraging him every step of the way.

Those moments reminded us that even in the middle of treatment, Hunter was still Hunter.

A Year Later

More than one year out from his diagnosis, Hunter is almost 2 years old and has come a long way.

Marisa reflects on the decision to do the clinical trial:

Today, Hunter is running around the house, exploring and showing his personality every day. Looking back, we know we made the decision that felt right for our family.

We are grateful that Hunter is able to receive this treatment close to home at Golisano Children’s. The doctors, nurses, pharmacists, researchers, and everyone involved in his care became part of our family’s journey.

Being able to stay closer to home meant the family could continue traditions that matter most, like gathering every Sunday to watch NASCAR.

Hunter blows kisses and notices the little things. He finds details in books that others miss, like a butterfly hidden on a page.

The family has learned that Hunter’s story is not just about a diagnosis. It’s about the people who cared for him, the research that gave him an opportunity, and the quiet moments that remind them why each day matters.

The things we once considered ordinary are not ordinary at all. Hearing Hunter laugh. Watching him run through the house. Sitting together as a family and realizing how much those moments mean.

We don’t take things for granted. Family time means everything now.

Offering Gratitude

This is the team that played a critical role in opening the clinical trial for Hunter’s treatment:

• Carol Fries, MD
• Jamie Littleton, MSN, RN, CRN-BC, CCRC
• Joy Snyder, PharmD, MPH
• Zachary Drawe
• Jessica Ellis
• Sparkel Foster
• Rafi Kazi, MD
• Chelsea Marsh
• Nicholas Simone
• Emily Wallace
• Dennis Weisbrod