Two Leukemias, One Fierce Little Girl: Zepplyn’s Story

When Zepplyn was six months old, she began repeatedly catching what her family and pediatrician assumed was a pesky virus.

At first, it didn’t seem too unusual given her young immune system. But the illnesses were constant, and for her mom, Stephanie, something felt off. Despite several trips to the doctor, her worry lingered.

Eventually Zepplyn developed a petechial rash: clusters of tiny red dots on her skin. Coincidentally, a week earlier, Stephanie had seen a video describing possible warning signs of leukemia in children. The image stuck with her and prompted a visit to their local emergency department to get it checked out. Initially Zepplyn’s care team suspected a viral rash, but Stephanie’s gut instinct and persistence ultimately led to more revealing bloodwork.

“My mother’s intuition told me, ‘This is something more’,” Stephanie recalls.

In April 2023, Zepplyn was transferred by ambulance to Lurie Children’s, and the next day, doctors confirmed what no parent is prepared to hear: their 8-month-old did, in fact, have cancer. Zepplyn was diagnosed with infantile mixed phenotype acute leukemia: a rare and aggressive form of leukemia that includes features of both acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML). The days following this life-changing news were blurry, Stephanie recalls. It was difficult for her and Zepplyn’s dad, Francis, to stop and collect their thoughts around what was happening – and instead they jumped into action.

“We didn’t have time to sit there and fully process it yet,” Stephanie says. “You just go right into fight or flight mode.”

Adjusting Overnight

Zepplyn was admitted to the Center for Cancer and Blood Disorders immediately and remained in the hospital for three and a half weeks. Infants often respond differently to chemotherapy than older children and require close monitoring, so her treatment needed to begin inpatient.

At home, Stephanie and Francis also had a two-year-old – Zepplyn’s older sister, Zaela. Life quickly became a balancing act between hospital stays, childcare, work schedules and finances. It was a whirlwind experience for everyone, demanding time and energy that was already hard to come by as parents of two young children.

“All I can say is I’m very grateful for Lurie Children’s,” Stephanie shares. “Having our feelings validated here helped me feel less angry.”

Zepplyn began induction chemotherapy using an ALL-focused approach, and initially, she went into remission as they’d hoped. That meant she wouldn’t need a bone marrow transplant, which was an enormous relief for everyone.

But remission came with its own reality: two full years of continued treatment.

A Treatment That Changed the Course

As part of her care, Zepplyn’s team advocated for her to receive an immunotherapy that was still in a five-year clinical trial at the time. The treatment was rigorous, requiring a continuous, 24-hour-a-day IV infusion for 28 days, but it gave Zepplyn the head start she needed on beating her leukemias.

"We were inpatient for the first 72 hours of the treatment but then were approved to go home and do her bag changes from there,” Stephanie says. “She was only 8 months old, so it was hard, but we made it work in a way that still allowed her to be a baby and have as much fun as possible.

To this day, Stephanie is extremely grateful to their oncologist Jenna Rossoff, MD, who pushed for the family to learn how to administer the immunotherapy at home so they could be as comfortable as possible in an environment familiar to Zepplyn.

“That was the best time of our treatment,” she recalls. “She knew how important it was to us.”

Finding Strength Through Setbacks

During her immunotherapy and for many months after, Zepplyn continued with chemotherapy. Despite many bumps in the road – colds, blood infections and low blood counts which delayed treatment, as well as shadows of worry over a relapse – she and her family persisted.

“We were in and out of the hospital constantly,” Stephanie explains. “There were days where we would go into clinic for a blood transfusion or chemo, and Zepplyn would randomly spike a fever and so we’d get admitted straight from clinic.”

The family spent Thanksgiving 2023 in the hospital, and while they were home for Christmas, it didn’t feel quite the same.

Uncertainty layered fear which layered exhaustion, and the constant anchor of hope throughout the journey was the team around them, Stephanie says.

“We could not have done this without Dr. Rossoff. We were matched with the perfect doctor. She understood me, she trusted me and gave me confidence as [Zepplyn’s] mom. She was so encouraging, and we always appreciated her blunt honesty.”

And in between visits with Dr. Rossoff, Zepplyn’s nurses were exactly who the family needed. Through each moment of doubt or overwhelm, the care team remained steady – supporting the family through every phase.

“The nurses – the friendships that we built and the way they were there for us – seriously, they’re the best support you could possibly have,” Stephanie shares. “When I was angry, they never made me feel silly for being angry; when I was sad, they never made me feel silly for being sad; when I was stressed, they would tell me to go get lunch, to go take a walk. There were many times they held me when I cried.”

A Fierce Future

In December 2024, the difficult stretches became less frequent, and on April 6, 2025 – exactly two years after her diagnosis – Zepplyn finished chemotherapy. She rang the end-of-treatment bell at Lurie Children’s later that week and this small, strong girl was properly celebrated by her loved ones with a “big, beautiful party.”

Today, Zepplyn, or “Zeppy” as her family calls her, is three years old and thriving. She’s in preschool, takes dance classes and practices taekwondo. And like many toddlers, she keeps her parents on their toes.

“She is the most stubborn, fierce, funny girl you’ll ever meet,” Stephanie says. “My mom always says the stubbornness is what got her through treatment. She is going to conquer the world one day if I ever make it through parenting her.”

Zepplyn now returns to Lurie Children’s every few months for bloodwork and checkups, but for Stephanie, the focus is simple: “I’m just taking it one step at a time.”