Myeloid Leukemia Associated with Down Syndrome: Cate’s Story
Meet Cate
Some children arrive in a family through biology. Others arrive through love, resilience and a brave decision to say “yes” when the path ahead is uncertain.
For Cate, that “yes” changed everything.
Cate was born premature at just 28 weeks, with Down syndrome, in southwest Missouri. She was quickly transported to Kansas City, where she spent the first months of her life in the Neonatal Intensive Care Unit (NICU) at Children’s Mercy. After going back home, she was soon hospitalized again and ultimately entered the foster care system. Much of her early life was marked by instability, medical complexity and transitions she could not yet understand. But just before her first birthday, Cate’s journey took a turn that would lead her to her forever family.
That was when she was diagnosed with leukemia.
Because Cate would require frequent hospitalizations and long stretches of treatment, the foster care system sought a Kansas City–area family who could support her through the months ahead. That search led to Joel Koenig, MD, pediatric urologist at Children’s Mercy, and his wife Karen.
Cate became their foster daughter just days before her first birthday.
Becoming family in real time
The Koenigs had talked for years about adoption. After welcoming two sons, Asher and Ethan, during Joel’s medical training, they felt called to foster — knowing the journey could be uncertain and emotionally difficult. Cate was only their second foster placement.
From the start, her needs were significant. In addition to Down syndrome, Cate required immediate cancer care. She was diagnosed with myeloid leukemia associated with Down syndrome, a rare form of leukemia that requires intensive chemotherapy.
“The prognosis for this type of leukemia is actually really good,” said Karen Lewing, MD, Hematology/Oncology/BMT, who is Cate’s oncologist. “The 5-year survival rates are around 85% overall.”
Treatment meant weeks at a time in the hospital followed by brief periods at home before returning to the hospital once again. Cate endured multiple cycles of chemotherapy over the course of about 6 months. She needed feeding support and close monitoring as her body worked to tolerate treatment and grow stronger.
Through it all, the Koenigs learned how to be not just foster parents, but advocates, comforters and steady constants in Cate’s life.
“We knew fostering might not end in adoption,” Dr. Koenig shared. “But we also knew we could support what the foster system was trying to do and if it worked out for reunification, and that’s what was best for the child, we were willing to support that.”
A sudden turn — and a fight for recovery
Cate completed her final round of chemotherapy — a milestone moment filled with hope. But just days later, she became critically ill.
She developed severe sepsis and was admitted to the Pediatric Intensive Care Unit (PICU), where she required a ventilator and dialysis. Her kidneys shut down. Complications from septic shock caused loss of circulation to parts of her feet, ultimately requiring partial amputation.
For weeks, her care team and her foster family supported her through the most fragile moments of her recovery.
It was a terrifying ordeal, but slowly and remarkably, Cate began to heal. Her kidneys recovered and she was able to come off dialysis. She continued her recovery with strength that surprised even those who knew her story best.
When a physician gets to be “just Dad”
Throughout Cate’s hospitalizations, Dr. Koenig experienced Children’s Mercy from the other side — not as a physician, but as a parent.
“I really wanted to just be her father,” he said. “I didn’t want to interject my profession in those moments. I just wanted to be there, and the team truly allowed me to do that.”
Dr. Lewing remembers that intentional choice clearly.
“They went in with the mindset of, ‘We just want to be her parents,’” Dr. Lewing recalled. “They weren’t trying to direct the care, they were simply focused on being good parents.”
Dr. Lewing also remembers the family’s openness and courage.
“I was just so amazed by the Koenig family,” she said. “I think you have such a big heart when you foster children, and then to adopt a child knowing she had multiple medical challenges. It just shows you what incredible people they are. Not everyone can do that.”
A forever family
Over a year after Cate joined their home, the Koenigs officially adopted her when she was 2 years old. By then, Cate had already overcome more than many people face in a lifetime — prematurity, cancer, critical illness and major surgery. But she had also gained something just as powerful: permanence.
Today, Cate is a very happy, affectionate and thriving 9-year-old, who loves dancing, her brothers and the family dog, Seamus. She’s considered cancer-free and continues to receive the specialty follow‑up care she needs to stay healthy and supported.
How Cate changed the way he cares
Cate’s journey didn’t just shape her family; it shaped the way Dr. Koenig shows up at Children’s Mercy every day.
In addition to his clinical and surgical work as a pediatric urologist, Dr. Koenig serves as Co‑Medical Director of Care Management and Patient and Family Services, supporting teams such as social work, Child Life, spiritual services and language services.
“I understood the importance of those services so much more when I was a parent of a patient, not just someone who works here,” he said.
That lived experience continues to guide how he advocates for families navigating some of the most vulnerable moments of their lives.
A story still being written
Dr. Koenig grew up in Wichita, Kan., and today also sees patients at Children’s Mercy Wichita, bringing specialty care closer to home for families across the region. Whether in Kansas City or Wichita, his work is shaped by the same truth Cate taught him: healing is about more than medicine.
Cate’s story is one of foster care, adoption, survival and deep compassion — a reminder of what happens when families, physicians and care teams come together with a shared commitment to a child. Sometimes, the most meaningful journeys begin not with certainty, but with a simple, courageous “yes.”