MONTVILLE – Two young brothers in town each had bone marrow transplants last year, and the family is now back in Maine to recover.
WVII/WFVX viewers first met 2-year-old Chance Cunningham a year ago. That was shortly after he got home from his bone marrow transplant in Boston. His little brother, Sawyer, was born in July and had his transplant in September.
Both needed the bone marrow to replace their immune systems, which had been attacking their healthy cells because they developed Hemophagocytic Lymphohistiocytosis or HLH. It’s a rare disorder of a body’s defense system.
“Sawyer is actually doing really well,” said Lacey Cunningham, mother of the boys. “His donor cells have gone down a little bit but the stuff that keeps him protected, they’re still at 97 percent, so he’s still growing.”
Chance has had a hard year. He turns three in June.
“They don’t really know what’s going on. His donor cells are pretty much gone,” his mom said. “He’s been getting sick, being admitted quite often for low platelets. They’re going to try to give him stem cells instead of lymphocytes this time. so hopefully, it boosts it up enough so he’s protected.”
She added, “We try to live life as normal as possible, even though the future is unclear.”
The disease is so uncommon, doctors are still learning.
“They just need more research and more funding,” Cunningham said. “It’s such a rare disease they call it an orphan disease.”
Cunningham and her husband, Jeremy, spent more than a month in Boston for each transplant, and Sawyer is currently in the beginning of nine months of isolation, the same thing Chance went through last year.
“It’s hard because they’re both on a lot of meds, still,” Cunningham said. “The little one has a feeding tube and a chest port. So he takes quite a bit of daily maintenance.”
Most days, Cunningham said, she’s beyond exhausted. She said the family is very thankful for the assistant of a home health nurse.
“Other than that we are just so happy to be home, in Maine,” she said. “There is nothing like it really.”
A friend from Winterport set up a GoFundMe page to help the Cunningham family with expenses.