Pediatric leukemia

Kinsley dances through life – even in the hospital

Kinsley dancing in the hospital as a baby
Kinsley dancing in the hospital as a baby.

Sarah and Ryan Judd still can’t fathom the stunning turn of events that befell their little girl, Kinsley, just after she turned one year old in June 2021. Once they learned that their baby had cancer, each day for this beautiful family from Davis, Illinois would come filled with countless physical, emotional and logistical challenges.

It began when Kinsley came down with a stubborn ear infection, but even more concerning, this incredibly sweet, joyful and energetic child lost her “mojo.” Now, all she wanted to do was cuddle in her mom or dad’s lap. Sarah, an elementary school principal, took her daughter to their local pediatrician, who found highly concerning low red and white cell counts in Kinsley’s blood.

“You need to take her to Madison right away,” said the local pediatrician, and within an hour, Kinsley and her parents arrived at UW Health’s Emergency Department.

After the family was settled in a patient care room, Dr. Greg Rebella, a UW Health Kids Emergency Medicine doctor, asked Sarah a simple question.

“What is your biggest concern right now?” he said.

“That she is not going to make it,” replied Sarah.

After doctors confirmed the diagnosis that all signs were pointing to — leukemia — or cancer of the blood, Dr. Rebella rightly sensed that Sarah and Ryan’s heads were spinning with worry.

“Dr. Rebella went out of his way to comfort us,” Sarah says. “He told us that leukemia survival rates for children are much higher than those for adults and chances were good that Kinsley would be ok. It made a huge difference at a moment when our world had just been turned upside down.”

Family life underwent big changes

While there might be a light at the end of the tunnel, the other end of the tunnel seemed far away. The Judds would devote the next six months to helping Kinsley keep her spark even while most of that time would be spent in the hospital.

With Sarah and Ryan living an hour’s drive away, coordinating schedules was no easy task to ensure that at least one parent was at the hospital with Kinsley while both spouses held down full-time jobs.

Kinsley with her parents in the hospital.
Kinsley with her parents.

“Most children with leukemia have the type known as ALL, or acute lymphoblastic leukemia,” says Kinsley’s UW Health Kids oncologist, Dr. Cathy Lee-Miller. “Kinsley’s leukemia, however, is called AML, or acute myeloid leukemia. Because this type of disease is more aggressive, we must treat it more aggressively. It was not an easy road, but she tolerated it well. Her cancer went into remission after the first month, but we still had to keep treating her for six months to give Kinsley the best chance for long-term survival.”

While no family would choose to spend so much time in the hospital with their child, Sarah and Ryan’s unwavering commitment to make hospital life as normal, if not fun-filled as possible, allowed their daughter not only to heal physically but emotionally as well. By trusting the doctors, nurses, therapists and child life specialists, Sarah and Ryan set the tone for Kinsley to view her care team as an extension of her family.

“When the doctors and nurses come around each morning to talk about the plan for the day, the hospital calls it rounding,” Sarah says. “We called them Kinsley’s parties. We were in the best place possible, surrounded by the best people,” Sarah says. “They did an incredible job not only meeting Kinsley’s needs but ours too, and that meant everything when your child is fighting cancer.”

A real social butterfly

Although her hospital stay began when she was just 13 months old, Kinsley left an unforgettable impression on everyone she met.

“Everybody loves her,” says Dr. Lee-Miller. “She was the ‘mayor’ of the floor — a real social butterfly.”

If she wasn’t exactly campaigning for votes, Kinsley quickly learned how to elicit laughs.

Dr. Lee-Miller holding Kinsley.
Dr. Lee-Miller holding Kinsley.

“Her raised eyebrows and little dances made everyone’s day,” says oncology nurse Lynae Meinholz. “She would do this little shimmy when the doctors and nurses came to round on her and crack everyone up.”

“She loved blowing big kisses to people in the hallway,” adds oncology nurse Jordyn Schemenauer. “She really is pure joy in a child.”

Nursing assistant Samantha (Sam) Fargo calls Kinsley her best friend throughout the six-month hospitalization.

“She started out hating me,” says Fargo. “We really clicked once I taught her how to stick her tongue out or pound on the table if she was hungry. Her parents thought it was hilarious.”

Kids are incredibly resilient

Caring for children like Kinsley each day brings great perspective, says Fargo.

“Anyone who spends five minutes with these kids and families learns quickly not to take anything for granted,” she says.

“People often think what we do is so sad,” adds Schemenauer. “No kid should have to grow up in a hospital, but our fulfillment comes through seeing how incredibly resilient kids are, even when they are being treated for cancer.”

Without question, not every day was a picnic for Kinsley. Overall, however, Sarah and Ryan’s desire to create the most playful environment for their daughter clearly helped Kinsley thrive.

“She would read books, cook with her play kitchen, dance all the time and make music with the music therapist,” Sarah says. “She even learned to walk in the hospital and spent Thanksgiving and Christmas there. Everyone we met went above and beyond for her and we will be grateful for that forever.”

Looking forward, Kinsley will receive close follow-up care for the next several years.

“Her body will feel the effects of the treatment for a while,” says Dr. Lee-Miller. “Developmentally, she should catch up to her peers fairly quickly.”

Few will forget how much joy Kinsley spread in the hospital, even though she won’t remember the experience herself.

“Kids as young as Kinsley don’t remember, but the parents, of course, never forget,” says Dr. Lee-Miller. “Kinsley’s parents always prioritized surrounding Kinsley with love and there’s no doubt how much their attitude helped Kinsley get through the toughest times.”