Kylin has always been a happy, goofy baby. She loves nature walks, being outside and, more recently, watching Barney.

She was born with a cleft lip and palate, but it never slowed her down. After surgery to repair it, her family expected to keep moving forward. Four months later, her mom, Diamond, noticed swelling in Kylin’s face. That symptom began a search for answers.

A mother’s instinct

At first, Kylin was treated for a possible infection. But Diamond knew something else was wrong. Kylin’s cries sounded different and she was breathing heavily. Diamond called Kylin’s pediatrician, who called an ambulance and sent them to the hospital.

From the moment they arrived, Diamond felt the team was determined to understand what was happening. Doctors also reassured her that she had done the right thing by trusting her instincts.

Testing showed that Kylin had a very rare form of acute leukemia with characteristics that made it difficult for doctors to classify. As a result, the team needed time and further testing to determine the best treatment approach.

The uncertainty was overwhelming. Diamond had little time to process the diagnosis as the care team worked to make decisions quickly. But one message from the care team stayed with her: the team was committed to seeing Kylin as more than a diagnosis and finding an approach built around her unique needs.

A treatment plan built around Kylin

For a time, treatment worked as hoped. Kylin reached remission, but the leukemia later returned in her central nervous system. Now 17 months old, she has spent over half of her life in active treatment.

For her relapse, Kylin’s care team created an individualized approach that became known as the “Kylin plan.” She has been receiving chemotherapy through a chest port and an Ommaya reservoir, a small device placed beneath the scalp that allows medication to be delivered directly to the central nervous system.

“Kylin is so strong for her age,” said Diamond. “She’s a fighter.”

Although the relapse brought new challenges, Diamond said Kylin’s oncologist, Julienne Brackett, MD, has helped her feel informed and supported through each new decision. 

Care that supports the whole family

Life in the hospital has its own rhythm. Diamond works remotely from Kylin’s room each workday, and evenings include bath time, medications, and a late feeding. Kylin has physical and occupational therapy twice a week.

Kinder Children’s Cancer Center has supported Diamond and Kylin beyond the medical aspects of care, providing Diamond with the space needed to focus on Kylin while still managing work and daily responsibilities. 

Learning to live in the present

Kylin’s journey has taught Diamond that a diagnosis can’t predict every part of a child’s story. She’s learned to look beyond numbers, ask questions and speak up when something doesn’t feel right. Most of all, she encourages other parents not to let fear of the future take over the time they have now.

Her advice is to make memories, stay present and keep seeing beyond the diagnosis.

For Diamond, that approach reflects what she has experienced at Kinder Children’s Cancer Center from the beginning. The team kept looking when the answer wasn’t clear, built a treatment plan around Kylin, and has continued to support the family through the medical and practical challenges of cancer care.

Learn more about expert care from  Leukemia Program, one of the nation’s largest and most comprehensive pediatric leukemia treatment clinics.