Never give up
Expert care and an indomitable spirit help young Ethan Li conquer aplastic anemia, the rare disease that nearly took his life
By the time Margaret MacMillan, MD, first met Ethan Li, then age 12, he’d spent the previous month with unexplained bruising, a low platelet count, and nosebleeds.
He’d also received two bone marrow biopsies—and the second one yielded a diagnosis of aplastic anemia, a rare blood condition.
“With aplastic anemia, the bone marrow isn’t working,” explains MacMillan, a blood and marrow transplant physician at M Health Fairview Masonic Children’s Hospital and the division director and a professor of pediatric blood and marrow transplantation and cellular therapies at the University of Minnesota Medical School. “You don’t make enough red blood cells, so you tend to be tired. You don’t make enough platelets, so you’re more prone to bleeding or bruising. And you don’t make enough white blood cells, so you’re more prone to infections.”
Ethan needed a bone marrow transplant, or BMT, so his parents started searching for experts. They learned that physicians at the University of Minnesota performed the world’s first successful BMT in 1968—and they’ve performed 10,000 more transplants since then.
With that history in mind, the family decided to travel from their home in Chicago to Minneapolis for Ethan’s treatment.
Jeanne Farley, MD, Ethan’s mother and an internal medicine physician in Chicago, and Ethan’s father, David Li, were also impressed by Masonic Children’s Hospital’s leading-edge approach.
“With a rare disease, we learned you go to the place that’s writing the protocols,” Farley says.
And that’s because Masonic Children’s Hospital is part of an academic medical system, one that prides itself on providing compassionate, evidence-based care while remaining dedicated to continuous improvement through research.
“Our whole focus is that the standard of care is not good enough,” MacMillan explains. “How do we improve upon what’s currently available? We write new clinical trials. We try to make transplants safer, more effective, and with fewer complications. That’s always our mindset.”
A life threatened
In April 2018, Ethan received a BMT at Masonic Children’s Hospital. Leading up to the transplant, he was given chemotherapy and radiation to kill off the remaining cells in his bone marrow, and then medicines to suppress his immune system, paving the way for his body to accept new stem cells, harvested from a donor’s bones and delivered via IV infusion.
Initially, Ethan’s new bone marrow was cranking out blood cells and, after three months of recovery in Minneapolis, the family returned to Chicago, with plans for a checkup every few months.
But by that fall, Ethan’s blood counts started dropping—and fast. Toxoplasmosis, a life-threatening brain infection, had gone on the attack, breaking down the cells in Ethan’s blood and bone marrow once again. Soon he was admitted to a Chicago intensive care unit, or ICU.
Days ticked by, but Ethan wasn’t improving—in fact, his situation was growing dire. After two months in the ICU and multiple discussions between MacMillan and Ethan’s parents, they decided to transfer him back to Masonic Children’s Hospital.
Ethan and his mom, along with a flight nurse, an EMT, and a pilot, boarded an air ambulance flight to Minneapolis, traveling from ICU to ICU. By this time, in addition to the brain infection, Ethan had fungal and viral infections in his lungs and required intubation.
“He had no immune system, so he couldn’t fight off these infections,” MacMillan says.
Plus, his kidneys were failing, so he had to be on dialysis, and he had a gastrointestinal bleed. The care teams tried many therapies, Farley says, “but nothing was working.”
‘Every, every, everything’
MacMillan advocated for a stem cell boost—“like a second transplant but without the chemotherapy,” she explains.
While they waited for both approval of the new plan and the donor’s stem cells, palliative physicians were asked to join Ethan’s medical team.
The family tentatively planned his funeral.
After a week of unresponsiveness, Ethan received his stem cell boost from the same donor from whom he’d received his bone marrow a year prior. With a little luck, those stem cells would repopulate his bone marrow, making enough white blood cells to fight off the infections.
One day later, he was squeezing his mom’s hand. Two months later, Ethan was healthy enough to be discharged.
Farley says she’s not a religious person, but she calls Ethan’s recovery a “miracle.” So does MacMillan, noting that even the brain infection didn’t cause lasting damage.
“It was quite miraculous how well he healed,” says MacMillan, also a member of the Masonic Cancer Center, University of Minnesota. “These are the kind of cases that you always remember, because you don’t want to give up hope, but you want to be realistic. Ethan’s experience is a testament to do every, every, everything possible because his outcome is so amazing.”
The power of hope
Today, Ethan is a 17-year-old high school senior, a straight-A student, and an avid sports fan. In the five years since Ethan’s nearly fatal experience, he and his extended family have been giving back. They’ve created a fund to fuel BMT research at the University of Minnesota Medical School and another fund that supports M Health Fairview ICU nurses.
“Being in the position to pay it forward, we thought if we could bring any karma or miracle to anyone else’s life, we wanted to do that,” Farley says.
Perhaps one of the other positives since his recovery is that much of Ethan’s experience is a blur.
“I don’t actually remember a lot of my time that I was sick,” he says, adding that he does recall an aromatherapy appointment with the integrative medicine team and the countless smoothies he enjoyed at the hospital.
Ethan is looking to the future, working on his college applications, captaining his high school chess club, and following his favorite sports teams, among them the Chicago Bears, Bulls, and Cubs.
Once a year, Ethan has a checkup to monitor for and address any lasting physical, mental, or emotional effects from the treatments he’s received and the challenges he’s faced.
Asked what advice he’d offer another teen facing a serious diagnosis, Ethan says this: “I know that’s been said like a trillion times, but truly you should never give up hope.”
Coincidentally, MacMillan has the same advice.
“His remarkable parents never gave up, Ethan never gave up, and we certainly never gave up on him.”