He has Down syndrome, then he got leukemia at 24

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Nash Huffman was living his best life as a college student at the University of Cincinnati last fall when he first began feeling ill.

A visit to the campus health center left him diagnosed with a suspected case of the flu, but his parents, Jeff and Jan Huffman, weren’t taking any chances.

When Jan Huffman traveled to Cincinnati to pick up her son for an appointment with his doctor, she knew it was more than the flu.

“He could barely walk,” she recalled. “He was vomiting; it was bad.”

Just how bad it was would become clear after she took the then-24-year-old to the emergency department of an Indianapolis-area hospital.

“When we got the diagnosis of leukemia, it was shocking.”

It might not have been so shocking 15 years earlier when Nash was a boy because he has Down syndrome, a genetic disorder caused by an extra copy of chromosome 21.

Young children with Down syndrome are at an increased risk of developing leukemia, a type of blood cancer. In fact, the Huffmans were adamant about getting their son tested for leukemia every year when he was young. But as he got older, the threat diminished.

“We knew the increased risk when he was younger,” Jan Huffman said, “but he’s always been very healthy.”

In the hours after the diagnosis, she went through a spiral, she acknowledged. “Your life just changes instantly.”

When the Huffmans were presented with a choice of two adult hospitals for Nash to receive treatment, Jeff Nash reached out to a friend for advice. That friend happened to be Dr. Rich Schreiner, former physician-in-chief at Riley Hospital for Children.

Dr. Schreiner thought Nash could be best treated at Riley because the young man was diagnosed with B-cell acute lymphoblastic leukemia, the most common type of childhood cancer, so he connected with Riley hematologist-oncologist Dr. Allison Yancey, who was on service at the time, and the next morning, Nash was transferred to Riley under Dr. Yancey’s care.

“We typically get referrals from the adult world for young adult leukemia patients such as Nash because we’re learning more and more that the outcomes are better with the pediatric-based regimen for specifically ALL (which Nash has),” Dr. Yancey said.

And while it’s true that the risk of leukemia in patients with Down syndrome is strongest in the first five years of life, she said, it can still occur in young adults.

It poses special challenges for patients with Down syndrome, who are more susceptible to treatment-related complications, including infections and side effects. That’s why the pediatric regimen includes built-in safety features, such as omitting some of the more intensive elements of chemotherapy to reduce treatment-related morbidity, as well as increasing supportive care measures, Dr. Yancey explained.

The modifications mean that Nash has tolerated most of his treatment fairly well and is now in remission, but he faces another year-plus of maintenance chemo.

“Dr. Yancey and her team have taken amazing care of our son,” Jan said. “She has been very helpful at guiding us through the treatment.”

Nash’s dad agrees, saying the oncologist has been “a phenomenal quarterback.”

But he also sings the praises of the broader Riley team for their expert care and compassion. That extends to Dr. Robert C. Burns, general surgeon, who operated on Nash at one point.

“I’ve never had a doctor spend so much time with us explaining everything he did and why he did it,” Jeff said.

And then there are the nurses. Too many to name, they say, but they mention Carol Hayden, Mary Rosser, Dalton Cummins and James Shepard.

The entire team is amazing, they say, both inpatient and outpatient. Not only have they cared for him physically, but they’ve bonded over their love (or disdain) for IU football.

Nash is a big IU football fan, and last fall, he was hospitalized for 55 days, during which time, he and some of the nurses saw a lot of the impressive wins the team celebrated.

A member of the football team even visited Nash and delivered a football signed by the team. Nash also has adopted IU Coach Curt Cignetti’s viral quote, “It’s pretty simple, I win” in his own life, sporting a T-shirt with the statement.

Leukemia interrupted Nash’s own college career, a time when he was fully integrated in campus life through the Transition & Access Pathways (TAP) program at UC, a four-year college experience for students with intellectual or developmental disabilities. Before that, he participated in the Erskine Green Training Institute in Muncie and worked two years in food service in Noblesville schools. Riley Hospital now also trains participants in the EGTI program.

Having to change course so suddenly has been challenging for Nash and his parents, but Jan said her son, who loves WWE and playing games on his X-box, has been “strong and brave” throughout and that he looks forward to the day he returns to school next fall.

Dr. Yancey said her patient continues to keep her on her toes in the best way possible.

“Nash is special in so many ways,” she said. “To me, it’s inspiring how engaged he is in his healthcare. I find that really impressive. It’s been a nice partnership with the whole family.”

Despite his disappointment at missing out on college life for the time being, he continues to push forward, she said.

“I’m so impressed with the way he has adapted to this and the way he interacts with our team as a whole. He has inspired many of us on the team in terms of his attitude and approach to all that is happening to him.”