Parents of Anchorage 6-year-old with leukemia seek help finding a potentially life-saving stem cell donation

Tiberius Newbill, a spunky, video game-loving 6-year-old from Anchorage, spent the last year at Seattle Children’s Hospital undergoing grueling rounds of chemotherapy and a stem cell transplant from his father. Tiberius was diagnosed with leukemia last summer, a week after he finished kindergarten.

The transplant in November brought a brief remission, but the boy’s cancer returned less than two months later, his parents said this week. Ever since, they’ve searched — without success — to find a stem-cell donor who could save his life.

Now they’re asking potential donors to consider taking a quick test at a Monday event hosted by the Alaska Native Medical Center in Anchorage to see if they might be a good match.

Tasha Newbill, Tiberius’ mother, said in an interview this week that the aggressiveness of her son’s cancer means finding a match is becoming increasingly urgent.

“So now we’re at the point where we’re doing chemotherapy again to get rid of the cancer that has grown back, and we’re trying to get to a second transplant. But we’ve run into this same problem again, where there’s no donor,” Newbill said.

Tiberius is mixed race — Alaska Native, Black and white — which means fewer potential blood matches, according to Christy Youngblood, a volunteer with Be the Match, a national registry that helps match potential stem cell and bone marrow donors to people with leukemia or lymphoma.

Newbill’s doctors have struggled to find a donor whose profile matches his.

Patients are most likely to match someone who shares their ancestry, Youngblood said, adding that Alaska Native people make up less than 1% of the registry.

“They searched through a database of over 4 million willing donors worldwide, and there’s nobody that matches him,” she said.

On Monday, Youngblood will help host a “live swabbing” event at the Alaska Native Medical Center. Anyone ages 18 to 40 can get their cheek swabbed to test whether they might be a good match for Newbill or someone else in need.

It can take about four weeks for those samples to be processed to determine if there’s a match, she said.

The chances of becoming a donor match are slim — only about 1 in 430 — but offering to join the registry is still seen as a commitment to donate if called upon, Youngblood said.

The event will be 10 a.m. to 5 p.m. outside the hospital’s main rotunda. It’s open to the public, and sample collection takes less than 10 minutes, she said.

Tasha Newbill said she wants Alaskans to know that if chosen to become a stem cell donor for her son, the donation process is typically a painless one that resembles a blood donation rather than a more invasive extraction that can involve drilling into the hip and is much rarer.

The majority of donations are “a simple blood draw that takes about three hours,” she said. “So you get to sit, watch television and let the machine do all the work. You’re awake. It’s pain free. And it’s a really easy way to help save a life for Tiberius or anybody in need.”

Anyone unable to attend Monday’s event can order a free kit, to be mailed back for processing, by visiting bethematch.org.

For his part, Tiberius Newbill has been handling this challenging last year relatively well, his mother said.

At the hospital, he’s popular with nurses and doctors. He likes to challenge them to rounds of video games and kick soccer balls in the hallway, and he once played a prank that involved a remote-controlled spider at the nurses station.

“He just has so much zest and love of life. He’s fast. He’s fearless,” Tasha Newbill said, adding that because of how young he is, Tiberius doesn’t quite understand the seriousness of his illness.

“He understands that he has cancer and that he’s sick,” she said, “but he still lives his best life every day.”