Karina Willis
“I am deeply grateful for CAR-T therapy and the emerging immuno- and cell therapies that are bringing her closer to enjoying a childhood free of cancer.” – Karina’s mom, Jessica
When Karina was just four years old, she was diagnosed with a rare form of acute lymphoblastic leukemia. A week before completing an intense two-year treatment plan, she relapsed. Inspired by Emily Whitehead’s miraculous story, Karina’s mother, Jessica, sought out CAR-T therapy and enrolled her daughter in a HuCART trial, one of the latest advancements in CAR-T therapy, at Children’s Hospital of Philadelphia (CHOP). The treatment was successful, allowing Karina to return to school and enjoy a healthy life. Although she relapsed again 18 months later and is now undergoing a bone marrow transplant (BMT), Jessica believes that CAR-T therapy gave Karina’s body the strength it needed.
Jessica shares the journey of her daughter’s diagnosis, relapses, and treatment, and their eventual path to CAR-T therapy.
Diagnosis and Early Treatment
In August 2020, Karina began complaining of arm pain and suddenly became lethargic. My late husband and I initially suspected COVID, but we soon received the devastating news that Karina, who had just turned four, had acute lymphoblastic leukemia. We were told to bring her immediately to Rady Children’s Hospital in San Diego, where we lived.
As Karina’s treatment progressed, we learned that her cancer was Philadelphia chromosome-positive, an aggressive mutation requiring an equally aggressive treatment plan. We spent most of the next two years in the hospital, and just as Karina was about to ring the bell to celebrate the end of her treatment, she relapsed. It happened so fast and with such intensity—95% of her bone marrow was filled with leukemic blasts, and this time, the leukemia had spread to her spinal fluid.
Typically, after a first relapse, the next step is a bone marrow transplant (BMT). However, I was concerned that her body, still recovering from treatment-related infections, wasn’t strong enough to endure the harsh chemo and radiation involved.
Becoming a CAR-T Warrior
I immediately reached out to Dr. Stephen Hunger, a renowned expert in pediatric Philadelphia-positive leukemia, who had provided a second opinion a year earlier. He recommended the HuCART trial at CHOP. I was thrilled, as I had learned about Emily Whitehead’s remarkable CAR-T journey, having first heard of her through a friend in Philadelphia who worked on the documentary “Of Medicine and Miracles.”
Seeking a less toxic, more targeted treatment, we flew by air ambulance to CHOP, where Karina was enrolled in the HuCART trial. The treatment was successful, and Karina was able to return to school and live a healthy life.
Sadly, 18 months after CAR-T therapy, Karina relapsed and is now undergoing a BMT. While CAR-T therapy wasn’t a permanent cure, it gave us a year and a half to strengthen her mind and body.
Life Today
As of August 2024, Karina is eight years old and eager to complete her BMT treatment. She loves cooking and enjoys arts and crafts, sharing her creations on her YouTube channel, “Karina Cooks, Crafts, and Explores.” An avid learner, she excels in school and has taken up acting, having been cast in a local production of *Seussical* just before her relapse. She’s excited to return to the stage as soon as she can.
Though Karina has faced incredible challenges, I am deeply grateful for CAR-T therapy and the emerging immuno- and cell therapies that are bringing her closer to enjoying a childhood free of cancer.
Activate the Cure
We receive messages from patients and families around the world with experiences similar to Karina’s family. We do whatever we can to be a resource for these families to help them get enrolled in a clinical trial or find a treatment center where they can access CAR T-cell therapy or other advanced therapies.
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