September 11, 2001, was not only a national day of tragedy—but also a personal one for Carter and Jackie Roberts. That day, their 2-month-old daughter, Eliza, was diagnosed with acute myeloid leukemia (AML).
Eliza’s doctors recommended that she start chemotherapy immediately but told the family that a blood or marrow transplant (BMT) would likely be in her future. The Roberts family kicked off an intense research process. Carter visited numerous hospitals across the country to learn more about Eliza’s treatment options while Jackie researched options from their home in Washington, D.C., and stayed with their infant twins and 3-year-old son.
Childhood cancer is devastating at any age, but only about 150 infants per year are diagnosed with leukemia. Today these infants face a survival rate of less than 50 percent, compared with a survival rate of 80 percent for older children. In 2001, less than 10 percent survived.
Those who do survive often face significant after-effects following their cancer treatments. Chemotherapy and radiation take a toll on any child’s still-developing body. Generally, the younger a child is when he or she receives those treatments, the more severe the after-effects can be.
The weight of the Roberts family’s situation set in. Carter met with pediatric cancer physicians across the country. Everywhere he went, he asked about the care team’s experience and the treatment course they’d recommend for Eliza.
“What we got was a kaleidoscope of recommendations,” he recalled. “There was no established protocol.”
It was disheartening, to say the least. Then Carter’s search brought him to what’s now known as University of Minnesota Masonic Children’s Hospital.
In the chill of winter, with wind whipping around the grounds, Carter met with University of Minnesota Health Pediatric Blood and Marrow Transplant Physician John E. Wagner Jr., MD, a renowned expert in his field. Physicians at the University of Minnesota performed the world’s first successful matched, related bone marrow transplant in 1968—now 50 years ago—and have continued to break new ground since.
During a long discussion in his office, Wagner invited Carter to come around to his side of the desk to look at a research paper he was about to publish. That research, published in the journal Blood in 2002, was widely recognized as groundbreaking and elevated Wagner’s international status as a medical innovator.
No one else had made the Roberts family feel so hopeful. They decided Wagner and his colleagues in Minnesota would give Eliza her best chance at a full life.
“It gave us a lot of comfort that Minnesota was open to different ideas and not fixed on one, and also was actively pursuing experimental trials focused on infants,” Carter said. “Once we made our decision, we didn’t have a moment of hesitation.”
“Recognizing the challenges of very poor survival and exceptionally high risks of side effects for the 7 percent [of infants that] did survive, we looked for something different—a new treatment regimen tailored to infants born with leukemia,” Wagner said.
In December 2001, the family flew to Minneapolis so Eliza could start treatments leading up to her bone marrow transplant.
It was scary at times, but the Roberts family believed Eliza would make it through the difficult treatment regimen. Throughout the journey, her integrated care team focused on not only getting rid of her cancer but protecting her from long-term effects as much as possible.
“We wanted to make sure that she was in large part the same child that she was at that moment and wasn’t some altered self from extensive radiation and other treatment,” Jackie said. “We just really appreciated John … and that willingness to think outside the box in an integrated way about her whole life and not just the next two years.”
Thankfully, the team’s experimental treatment plan worked without the need for radiation.
Today, Eliza Roberts lives a wonderfully typical life. A junior in high school, she plays tennis and lacrosse. She loves French and art and gets nearly straight A’s. And she leads her school’s cancer awareness club.
Eliza goes to extra doctor’s appointments for follow-up care, and she will for life. Despite this, she rarely thinks about having had cancer. Still, simply knowing about the experience does provide some perspective, she said.
“We were talking about something the other day and my brother said to me, ‘You got through cancer. You can get through this,’” Eliza said.
And more than 16 years later, Carter and Jackie Roberts are still filled with gratitude for the University of Minnesota team who gave Eliza the incredible life she has today.
“She’s a magnificent kid,” Carter said. “She’s incredibly kind, smart and well-adjusted, with lots of friends. It’s all good.”