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Joaqlin Estus
Indian Country Today

In March 2021, Tiberius Newbill, Inupiaq, had just graduated preschool and was celebrating his 5th birthday when his mother got a call from the hospital.

He had been diagnosed with an aggressive form of acute myeloid leukemia.

In the following months, several rounds of chemotherapy at Seattle Children’s Hospital failed to wipe out the cancer. After a clinical trial involving chemo and immunotherapy he was well enough to have a bone marrow stem cell transplant in November. The closest thing they had to a match was with his father who shared 5 out of 10 gene markers. But the cancer came back after 80 days.

Now, Tiberius is undergoing another round of chemo. The goal is to beat back the cancer so he’s well enough again for another transplant – if he can find a match.

His mother Tasha Newbill, who is Inupiaq, said a stem cell transplant, “would be life saving for him, and this is our best shot.”

The problem is finding a donor whose human leukocyte antigen matches Tiberius’.

“It's something that a lot of people who are of mixed heritage or multicultural really have a hard time finding compatible donors because there aren't that many of us on the registry,” said Newbill. Tiberius is also Black and White.

According to the nonprofit Be The Match website, 79 percent of White people will find a matching donor. Successful matches drop to 60 percent for American Indian and Alaska Native people, and 29 percent for Black or African American people.

“It's not that these people don't have a match. There's maybe a match out there that just has not joined the registry yet,” Christy Youngblood said. She’s a Volunteer Ambassador for Be The Match. She said Alaska Natives make up less than 1 percent of the registry.

Tiberius Newbill, age 5, blowing bubbles a few days after his first haircut, given when after 5 months of treatment his hair began falling out in large clumps. 10/08/21 (Photo courtesy of Tasha Newbill).

“So we're trying to reduce those barriers and get the word out that we really need American Indian and Alaska Natives to join the registry,” Youngblood, who is a cancer survivor herself, said.

It’s easy to start the process of becoming a donor, she said.

“In order to join the registry, we swab your cheek or you can order the kit on the website and it will be mailed to your house. You can swab at home and mail it back in,” Youngblood said.

In most cases, donating is not too big a deal either.

“If you do match someone in need, the way that the donation process would work is over 80 percent of the time they need stem cells and it's a similar process to giving blood or plasma.

“Less than 20 percent of the time they need marrow. It's surgically removed from your hip and kind of feels like you fell on the ice, sore and icky for a day or two, and typically back to normal activities within a couple days,” she said.

For those who don’t meet the age or health qualifications, “some other ways that you can help are by donating blood and platelets. There’s a national shortage all over the U.S. because of the pandemic. And so if you are healthy and able to donate blood or blood products, please do, because it can help save lives. So you can be a hero in more ways than one,” Newbill said.

Tiberius Newbill enjoying one of his favorite activities: a video game. The Anchorage child has been at Seattle's Children's Hosptial for more than a year undergoing chemotherapy and one stem cell transplant, which brought him an 80-day remission of his acute myeloid leukemia. He's getting chemo again to beat back the cancer enough so he can get another transplant -- if a matching donor is found. n.d. (Photo courtesy of Tasha Newbill).

Newbill said childhood cancer ripples through the whole family. She said as soon as her son was diagnosed, they were medevaced to Seattle.

“We walked out on our life on 10 minutes notice, you know? It's a hard path to be on,” Newbill said, “but I feel like the Creator knew that we could take this and turn it into something positive,” by bringing awareness of the disease and the need for stem cell donors.

“That's really the only thing that you can do is try to focus on the good and focus on the things that are the silver lining in that cloud and to look for the rainbows, ‘cause otherwise it can consume you and it consumes a lot living here in the cancer ward (at Seattle Children’s Hospital).”

Kindergarten is on the back burner for now but Newbill hopes her son will be back in school soon.

“We were supposed to go to Alaska Native Culture Charter School (in Anchorage) this year, and we had to give up our seat so … later when he can, if he's healthy enough to go back to school, we'll try to get back in then,” Newbill said.

To join the registry you need to be 18-40 years old, meet health guidelines, and be willing to donate to anyone in need.

The Alaska Native Medical Center in Anchorage, Alaska is holding a registry drive on Monday but anyone can register anytime at Be The Match.org.

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