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Community

'A Christmas miracle:' One woman's journey with bile duct cancer

Jenifer DeMattia

By: Paige Jones

 

When Maikki Nekton unexpectedly found bruises dotted across her legs and became fatigued, she knew something was wrong.

“One morning, I woke up and looked like somebody had beat me up,” the 32-year-old Frederick resident said.

Concerned about her symptoms, Nekton visited her doctor, who thought it might just be a virus, but had some blood work done just in case.

“Within five days, I ended up in hospital... (and) it just got worse,” she said.

In June of 2014, Nekton was diagnosed with primary sclerosing cholangitis (PSC), otherwise known as the disease of the bile ducts.

Bile ducts typically carry digestive liquid bile from the liver to the small intestine. For those with PSC, the bile ducts become inflamed and scarred, which can lead to liver failure or tumors of the bile duct or liver, according to the Mayo Clinic website.

The only known cure for PSC is a liver transplant.

After months of medical procedures and tests, the once-healthy Washington County Public Schools social worker and diehard New England Patriots and Boston Red Sox fan was now in and out of the hospital.

In August, Nekton received more devastating news; she was diagnosed with cholangiocarcinoma, or bile duct cancer.

Friends and family rallied around Nekton. Seven of her close women friends formed the support group Team Maikki as a way to stay in touch with Nekton as she headed out to the Mayo Clinic in late August and provide encouragement. The group has raised almost $9,000 to help Nekton pay her medical bills, said Jenny Ritter, a close friend and former college roommate.

Others began the process of becoming a liver donor for Nekton, undergoing multiple blood tests, interviews and medical screenings. Weeks later, doctors named Jenifer DeMattia, one of Nekton’s closest friends, to be the best candidate. DeMattia had inquired about donating a portion of her liver, and in order to be accepted, needed to go through extensive emotional, medical and psychological testing.

“I was excited, but I was scared to death, not more so for me, but more so for her,” Nekton said by telephone from the Mayo Clinic in Rochester, Minnesota.

The two met in 2006 while working at Way Station, Inc., a non-profit located in downtown Frederick that provides services to those with serious mental illness and emotional and behavioral disabilities. They soon became good friends and remained close, even after they were no longer colleagues.

“I did it because she’s like... family,” DeMattia. “She’s like a sister to me.”

Meanwhile, Nekton underwent multiple rounds of chemotherapy and radiation, and became a regular visitor to the Mayo Clinic in Minnesota.

But after DeMattia was named a candidate for Nekton’s liver donor, the week after Thanksgiving, things sped up. On Dec. 15, doctors performed a staging surgery to determine if they could go forward with the liver transplant.

“They actually look right at the liver itself and make sure your cancer hasn’t spread,” Nekton said, explaining the procedure.

However, test results from the procedure indicated the cancer had spread, and told Nekton she could not go through with the liver transplant.

“They had been pretty clear — people in this situation... (some) have a few weeks and some people have a few years,” Nekton said.

A few days later, DeMattia was called in to speak with the doctor, both assuming she would be asked to donate a portion of her liver to another patient. Instead, the doctors informed DeMattia the liver transplant would go forward after further examining the test results. Surprisingly, pathology results indicated the cancer had not spread.

“They’ve never reversed a liver transplant decision,” Nekton said of the Mayo Clinic. “It was a miracle, really; it was life changing for sure.”

DeMattia called it a “roller coaster of emotions.”

The next day, Dec. 19, DeMattia and Nekton went into surgery, the operation only taking half the time needed. Both women stayed at the hospital as they recovered, and continue to mend today. DeMattia is back home in Frederick while Nekton is still at the Mayo Clinic.

Weeks after the surgery, Nekton’s body has yet to reject the portion she received of DeMattia’s liver.

“She’s truly been given second chance at life,” Ritter said of Nekton. “It’s truly a Christmas miracle, that’s all I can say.”

DeMattia and Nekton agreed.

“Now I’ve had this transplant... I have an opportunity to live a longer and healthier life,” Nekton said. “I feel a new sense of life and I have so much more to give to other people.”

Follow Paige Jones on Twitter: @paigeleejones.

To stay updated on Maikki Nekton's recovery, visit her Caring Bridge page at http://www.caringbridge.org/visit/maikkinekton

To donate, visit Nekton's Patty Pollatos Fund page at http://www.ppfinc.org/recipients-page/maikki-nekton/