When a child can make barely enough blood cells to stay alive, the parents search for the best doctors on the planet. That’s what Ethan Li’s parents did.
Five years ago, when young Ethan started having unexplained bruising, a low platelet count, and nosebleeds, he underwent two bone marrow biopsies. The second revealed the culprit: aplastic anemia, a rare disease that inhibits bone marrow from making blood cells.
That’s as big a problem as it sounds.
“You don’t make enough red blood cells, so you tend to be tired,” explains Margaret MacMillan, a bone and marrow transplant physician at M Health Fairview Masonic Children’s Hospital and division director and professor of pediatric blood and marrow transplantation and cellular therapies at the U of M Medical School. “You can’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, who was 12 when MacMillan met him, needed a bone marrow transplant (BMT).
After a search, Ethan’s parents—Jeanne Farley, an internal medicine physician in Chicago, and David Li—found the right place. Not only had U of M physicians performed the world’s first successful BMT in 1968, but they’ve performed more than 10,000 since then. Also, the couple were 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.
Through the dark days
Ethan received his transplant in April 2018. After three months, he returned with his family to Chicago. But by fall, he was wracked with toxoplasmosis, a brain infection that attacked his blood and marrow cells. He also developed fungal and viral infections in his lungs and had to be flown back to Minneapolis.
“He had no immune system, so he couldn’t fight off these infections,” MacMillan explains.
He also suffered kidney failure that required dialysis and a gastrointestinal bleed. Many therapies failed.
MacMillan turned to a second transplant from the same donor, this time for a “stem cell boost” to stimulate production of white blood cells. While awaiting approval for the procedure and the donor stem cells, palliative-care physicians were asked to join Ethan’s medical team.
And his family made tentative funeral plans.
After being unresponsive for a week, Ethan received his stem cell boost. A day later, he was squeezing his mother’s hand. Today, he is a healthy high school senior, straight-A student, and chess club captain who is busy with college applications.
Asked what he would tell another teen with a similarly serious condition, Ethan says: “I know it’s been said like a trillion times, but truly, you should never give up hope.”
Just as no one gave up hope on him.
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