Santa Fe boy battles rare blood disease

School to offer locals a chance to give life-saving bone marrow to help child


By Robert Nott

The New Mexican

Until Tuesday, Nov. 21, 2017, Piñon Elementary School student Lucas Tapia was like any other 7-year-old.

He liked to play football. And draw. And go see any film featuring Lego trucks at the nearby Regal 14 Cinema, located just 100 yards or so from his apartment on the south side of Santa Fe.

But earlier that month his mother, Elizabeth Tapia, noticed he was growing paler by the day, almost yellowish. His appetite had faded away. And he was tired all the time.

So that afternoon she took him for a checkup at Christus St. Vincent Regional Medical Center, where she works in education support and as a medical chart examiner.

By 9 p.m. that night, the pair were on a helicopter headed to The University of New Mexico's Children's Hospital in Albuquerque.

Lucas was diagnosed with aplastic anemia, a rare bone marrow and blood disease that affects the body's ability to make new red blood and white blood cells as well as platelets, which help the blood to clot and stop bleeding.

He spent Thanksgiving Day in the hospital. He hasn't been to school since that week. He leaves his apartment only for medical appointments. Blood transfusions and injections of pilot drugs to fight the disease have become the norm.

It was a bewildering time for the once jovial, easygoing child.

"He was questioning everything. He didn't understand what was happening," said Elizabeth Tapia. "Now he's going with the flow."

Still, Lucas acknowledged between bouts of playing an online game called Geometry Dash, "it's tough."

Is he scared? Or confident he will be OK?

"I don't know," he replied.

His mother had to take leave from her job to take care of him full time. Their apartment has become their entire world. If either of his two older brothers gets a cold or some other illness, they have to spend the night at a relative's place. Visitors to the apartment must don surgical masks and wash their hands, and not be sick.

His teacher, Lizette Rivas, helps him by video and phone, running him through his lessons as he works on a whiteboard installed on one of the walls of his apartment.

Their new family, Elizabeth Tapia jokes, is one made up of doctors and nurses.

"I had no clue that this disease was out there, that this could happen," she said.

"Every day is tough. Me and Lucas both have days where it's very hard. But we know we have a big support group out there. We have people who are praying for us."

The Piñon Elementary School community is part of that group. It is hosting a bone marrow donor registry from 9 a.m. to noon Saturday (Feb. 24) in the school gym to raise awareness of his plight and the disease - and to see if a bone marrow donor can be found for Lucas.

Aplastic anemia is a disease that occurs in one to two people per million every year, according to St. Jude Children's Research Hospital data. That equates to somewhere between 300 and 600 new cases across all age groups in the United States in any one year. But patients under the age of 20 who undergo a stem cell or bone marrow transplant have an 80 percent chance of survival, according to St. Jude's.

One challenge, said Aubrie Vargas, a community engagement representative for Be The Match, a national nonprofit bone marrow donation organization, is that only 30 percent of patients have a matching donor in their family. For example, neither of Lucas' older brothers matched his tissue type for a donation.

"So you have to look through a bone marrow registry to see if there is a match, a stranger in the country or the world to share the same tissue type," Vargas said. "It's very difficult to match patients and donors together - but it's not impossible."

Piñon school nurse Myrna Barbee Lee said that based on her conversation with school nurses at the district's other facilities, Lucas Tapia is the only student in the district she knows of who suffers from aplastic anemia.

"It's pretty darn rare," she said. She described Lucas as "super sweet, quiet, always a friend to other students and caring for others."

He was quiet earlier this week, sitting on his couch and watching an episode of "The Muppets," dreaming of a trip to Walt Disney World Resort in Florida, so he can tour The Haunted Mansion, wishing that when he grows up he might become a race car driver or monster truck driver.

But for now, more than anything else, he wants just one thing.

"I want to go back to school," he said. "There's cool stuff to do there."

Contact Robert Nott at (505) 986-3021 or rnott@sfnewmexican.c­om.


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