Isle woman’s marrow saves Cincinnati girl
Kapolei resident Rose Anne Schucht never imagined that a simple act done to help a friend in need of a bone marrow transplant would end up saving a young girl’s life.
Schucht, a former Ihilani Resort and Spa employee, joined the national Be the Match bone marrow registry after her friend and coworker, Sharnell Onaga, was diagnosed with leukemia in 2007. Nearly 750 Ihilani employees swabbed their cheeks to help Onaga, who needed a lifesaving transplant.
The chance of finding a match ranges from 1-in-540 to 1-in-10.5 million, depending how common the patient’s tissue type is, according to the Hawaii Bone Marrow Donor Registry.
Two years before and thousands of miles away in Los Angeles, Sam and Mina Chamberlin welcomed their first child into the world. “Everything was perfect,” Mina Chamberlin said of her daughter, Maya. “I would never have known what was coming.”
As Maya grew, she was in the 95th percentile for her height and weight and appeared to be precocious. By 18 months she knew her numbers 1 through 20, and by age 3 was reading chapter books, her mother said.
Mina Chamberlin kept detailed records of her daughter’s health, including details on how long and often baby Maya breastfed, her changes in weight. She had even kept an Excel spreadsheet documenting the daily tally of wet diapers. “I don’t know if it was maternal instincts or what, but I took obsessive notes, and I think when Maya got sick it was instrumental in helping the doctors put things together,” she said.
From infancy, Maya suffered high fevers every few weeks. Her blood work revealed that during those fevers her blood count was low, causing her to become anemic, and her platelets — the cells involved with blood clotting — would drop.
“This kept happening over and over again, and I knew something was wrong,” Chamberlin said. “(Pediatricians) said this is something she will probably grow out of as she gets older, but the fevers continued.”
In 2009, after a series of blood tests and a review of Chamberlin’s notes by an infectious-disease doctor, the 4-year-old girl was diagnosed with the
life-threatening immunodeficiency disease known as HLH (hemophagocytic lymphohistiocytosis).
“It was on 09/09/09 — I’ll never forget the date,” Chamberlin said. “They started her on steroids right away.”
HLH patients have overactive white blood cells that accumulate on and attack healthy lymph tissue — the spleen, liver and lymph nodes — potentially damaging vital organs. The only effective treatment is a bone marrow transplant.
When Maya’s health became stable enough for her to travel, the Chamberlins moved to Cincinnati from L.A. to be near Cincinnati Children’s Hospital and Medical Center, a top hospital for HLH treatment. Chamberlain quit her job, and her husband took a job based in Chicago.
Three months after arriving in Cincinnati, Maya found a marrow transplant match and started chemotherapy in preparation for the transplant. After receiving the new marrow, Maya’s cell count rose above 90 percent, but her family’s elation lasted only a few days.
“We were just fighting for her life,” Sam Chamberlin said. “We were leaning on our faith, praying and praying, and then — it doesn’t work.”
Mina Chamberlin said their hopes were shattered as they watched Maya’s cell count drop from 90 percent to 70, to 25 and, two weeks after the transplant, zero.
At that time Maya kept a stack of her then-favorite book series, the Berenstain Bears, by her bedside and every day drew a new picture of her family.
“One day I walked into Maya’s hospital room, and she was reading her books and doing her art. She looked up at me and said, ‘I’m gonna make it,’” Sam Chamberlin said, holding back tears. “It was right then I knew Maya’s not going away.”
Maya soon found another match in Schucht. The family was required to wait a year before the next transplant, and the girl underwent intensified chemotherapy.
“When they told me the recipient was a 4-year-old child — I have a son the same age — so as a mom it just broke my heart,” she said.
Schucht said when she received the call, her mind flooded with memories of Onaga, who died in 2007, leaving behind a husband and three daughters. Onaga had found a marrow donation match, but when the donor was contacted, he opted not to participate.
While most marrow extractions are done through a blood draw, Schucht was put under anesthesia for marrow extraction from her pelvic bone. “It’s a bad myth that people think it’s painful,” she said. “They put you under the whole time, and I went home the next day.”
The second transplant was a success, and Maya, still a voracious reader, is now a healthy 11-year-old playing soccer, basketball and the drums starting sixth grade.
“The one and only reason why Maya survived all this was because of RoseAnne,” Mina Chamberlin said. “If she wasn’t on the registry, I don’t know what the outcome would have been.”
The family first met Schucht a year after Maya’s successful transplant. And last month, while on Oahu for vacation, the Chamberlains met with Schucht again, expressing eagerness to share Maya’s story and to let others know that a cheek swab is all it takes to register and possibly save a life.
“A person who needs a transplant is facing either receiving a transplant or dying,” Sam Chamberlin said. “When someone does a marrow transplant, they’re involved with saving someone’s life.”
Maya Chamberlin, 11, of Cincinnati, left, was reunited with her bone marrow transplant donor, Rose-Anne Schucht, a staff assistant for The International Brotherhood of Electrical Workers 1357, during a trip to Oahu in July.