Since he completed treatment for leukemia in March, 12-year-old Levi Buxman is learning how to be a kid again — and advocating on Capitol Hill while he’s at it.
After being diagnosed with B-cell acute lymphoblastic leukemia in November of 2023, Levi endured countless pokes, rounds of chemotherapy, scans and surgeries at Akron Children’s Hospital.
Now, he and his family are relearning life without all the appointments.
“Everything revolved around his disease for 2½ years, and to now just be coming here once a month for a checkup, it’s kind of strange,” said Lauren Buxman, Levi’s mom, during a recent interview at the hospital.
Levi is getting stronger every day, and Lauren said life after his treatments ended has been wild. She never expected her son’s story to end up on NBC Nightly News in March, let alone lead to him advocating for other kids like him on Capitol Hill.
The Buxmans were the perfect family to bring to Family Advocacy Day last month in Washington D.C., said Michael Wellendorf, government relations manager at Akron Children’s. They enjoy advocating and are open to telling their story.
Children’s Hospital Association, which represents more than 200 pediatric hospitals nationwide, hosts Family Advocacy Day every year. About 50 hospitals bring a family to Washington, D.C., for the event to advocate for pediatric care and go sightseeing.
In D.C., Levi met with elected officials from Ohio, including Rep. Emilia Sykes, Rep. Max Miller, Sen. Jon Husted and more. He also visited the National Air and Space Museum and the National Museum of Natural History.
Advocacy focused on highlighting the importance of pediatric-focused hospitals, as well as Medicaid.
Lauren said that because Levi has Down syndrome, going to a kids-focused hospital is especially important. At Akron Children’s, she said, he was treated like any other kid, and she never felt like her family got lost in the shuffle.
She said having life go back to “normal” post-treatment is weird, but she, Levi, her husband and her two other sons have been enjoying the free time.
“We went from being so on alert all the time to having freedom,” she said, watching as Levi danced in the center of Akron Children’s Expressive Therapy Center room.
Advocating for Medicaid and children’s hospitals
Advocating for Medicaid this year was important, Wellendorf said, as about 3 million people in Ohio are covered by the insurance, and almost half of those enrollees are children.
In Ohio, patients can receive institutional Medicaid if they stay in a hospital consecutively for 30 days or more. Levi was able to receive this coverage when he was first diagnosed with leukemia and had a 70-day hospital stay.
Later on, when Levi had a 30-day stay at Nationwide Children’s Hospital in Columbus, his mother said she was billed $850,000, even with the private insurance they received through her husband’s employer.
“Who can afford that?” she asked. “All the tests, and all the chemo — at one point, he was getting lumbar punctures … twice a week — that all adds up. Without [Medicaid], we would have never, never been able to afford that, which is pretty disgusting.”
These kinds of costs affect families of all income brackets, she said, adding, “No one plans for that kind of medical expense.”
Speaking to representatives
The story the Buxman family shared with the elected officials was powerful, Wellendorf said.
“They can speak to the care that they’ve received, speak to the culture of the organization, speak to what would happen if Akron Children’s wasn’t around or didn’t provide the kind of care that they’ve received,” he said. “That just speaks volumes and speaks in a way that I never could.”
Akron Children’s is the only hospital in Northeast Ohio dedicated to pediatrics. Lauren can’t imagine going through Levi’s treatment journey at an adult hospital, she said. Her family drives to Akron Children’s from Wooster because they know the hospital’s care is child-focused and not scary.
She told Wellendorf she’s open to more advocacy in the future. Levi is, too, even though after walking all around D.C., visiting museums and going sightseeing, he said, “My tiny legs were tired.”
Levi’s life since finishing treatment
This summer, Levi’s family is taking a trip to Torch Lake in Michigan. Levi, raising his arms in the air, said he is most excited to “swim in the sea again!”
Since getting his med port taken out May 11 — which Lauren said he snuck to school multiple times to show off — Levi can do many of his favorite things again. His family recently had their first campfire, and Levi got to eat ribs off of his dad’s offset smoker without the worry of fungal infections.
He’s also been enjoying lots of hikes and spending time in bodies of water instead of having to sit on the sidelines and watch.
His mother said they can finally travel freely without worry about where the nearest children’s hospital is or packing a medical kit.
“He’s doing really big things,” she said.
Lauren Cohen was a community reporting intern for the Akron Beacon Journal and Signal Akron. The position was funded through a grant from the Knight Foundation, which is a financial supporter of Signal Akron.
