Laughter, Friendship and Staying Positive

Survivor Squad Member Kayla is Grateful for Everything She Has

When she was almost 11, Kayla was mysteriously sick for two months. She noticed she couldn’t walk around New York City during a dance competition without feeling sick. First her doctors thought she had a cold or mono, and then a stomach bug. Then, on her 11th birthday, her lymph nodes became the size of baseballs. Her blood work showed that her white blood cell count was through the roof.

Kayla had a cancer called acute myeloid leukemia (AML).

Her mother couldn’t take it in. She couldn’t believe they’d gone from a stomach bug to cancer — and, it turned out, a rapid-growing cancer that occurs predominantly in men aged 60 and older.

When the doctors said they were sending Kayla to Roswell Park, “that is when it hit us,” her mom, Amanda, says. “We didn’t even know Roswell treated children. But when we got here it was like they rolled out the red carpet. They were fantastic from start to finish. They kept us calm.”

Kayla went through chemo. She had to quit dancing, which she’d been doing avidly since age 3 — tap, ballet, jazz, hip-hop, acro and lyrical. She says she got through her treatment with the support of her parents, siblings and night nurses. “My night nurses were my saviors,” she says. “They would watch movies with me, make me food; I was so very close with them.”

She also qualified for two clinical trials, which means she was able to test out a brand-new treatment before it became available to the public.

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Kayla’s family celebrated her remission with a trip to the Florida Keys. Then, after two years and almost three months of remission, she relapsed.

This time she had to have a bone marrow transplant (BMT) in addition to chemo. When important cells in the bone marrow stop working, a BMT replaces them with healthy cells that get things operating again. The cells might come from the patient themselves but often have to come from a donor.

Kayla’s donor is from Germany. Since her BMT, she’s developed new allergies that might have come from her donor — including an allergy to cats, and she loves cats!

Kayla says her treatment was grueling, but once again, she got through it with the help of her family and night nurses, plus all the other kids and families she had now met through Courage of Carly Fund programs and other pediatric cancer groups.

“We can just talk about it and not feel weird,” Kayla says. “We can compare different things and talk about everything we’ve been through.”

But her true savior is the dog she got 200 days after she completed her BMT, a golden retriever named Bentley who was her reward for finishing treatment. She had to wait that long before getting him because it takes that long for doctors to be sure the new cells have locked in and started working, and the worst risks for side effects have passed. Bentley has been her best friend ever since.

Her experience has made Kayla want to go into the medical field, and she is still deciding whether she wants to be a doctor, a nurse or a nurse practitioner — the last because of a nurse practitioner at Roswell Park who had a big impact on her treatment.

Fighting cancer has changed her outlook on life, Kayla says. Due to the lasting effects of her treatment, she can’t dance now, but that’s just one small piece of the puzzle. “I am grateful for everything I have. You just don’t know what’s going to happen. Have fun with everything.”

And always remember her recipe for the best medicine of all: “Laughter, friendship and staying positive!”

Editor’s Note: Cancer patient outcomes and experiences may vary, even for those with the same type of cancer. An individual patient’s story should not be used as a prediction of how another patient will respond to treatment. Roswell Park is transparent about the survival rates of our patients as compared to national standards, and provides this information, when available, within the cancer type sections of this website.