Blood donations keep boy alive
Xisto Montoya is prepared for our interview, asking in advance for a list of my questions so he can dictate a few notes to his mother. At age 10, Xisto likes to know what he’s getting into. During an appearance on a local TV station, he froze for a moment, unsure of what he was supposed to do, then went on to nail the interview. He won’t repeat that freeze moment again.
“I want to know things,” he says. “Even when they’re scary.”
Xisto doesn’t scare easily, doesn’t rattle easily. For a fifth-grader, he’s pretty easygoing, the kind who’s always ready with a Plan B, who doesn’t wince when
he knows he has to talk in front of a crowd or an adult or a journalist like me, as long as he knows what’s what.
He knows what few kids his age know — what it’s like to deal with a rare and potentially deadly bone marrow disease. How every day is precious because another day is never a certainty.
Last spring he started getting tired more often, once dozing off as an altar boy during Mass.
“I thought, OK, he needs to go to bed earlier,” says his mother, Anita Montoya.
Then in March while on a trip to Texas for a taekwondo tournament — Xisto has been practicing martial arts since age 3 and is a first poom, or junior, black belt — little red spots began dappling his legs. A rash, his mother thought. His gums started to bleed. “It was gross, all that blood on the pillows and sheets from his mouth,” recalls Juni Montoya, 14, the elder of Xisto’s two sisters.
Not brushing his teeth enough, his mother thought.
Just to be safe, she took him to the doctors. What they found was alarming. Blood tests showed a critical lack of platelets, the cells that clump and clot the blood. Without them, a fall, a bruise, a kick, a cut can be deadly.
Xisto underwent an emergency blood transfusion at University of New Mexico Hospital, where he remained for a week as doctors pondered what had gone so wrong in what had been a normally healthy boy.
“That was really, really scary,” he admits. “Long, boring and scary.” Leukemia, his mother thought. But no. In April, they had a diagnosis: severe aplastic anemia, a rare disease that occurs when the bone marrow stops making enough red blood cells to support life. It is not contagious, nor is it inherited, and the cause is almost never known. It affects all ages, races and gender, though it is more likely to attack young people. Until the 1970s, it was almost always fatal, but today it is treatable, most successfully with a bone marrow transplant if a match can be found, or immunosuppressive drug therapy.
So far, no match has been found for Xisto. For now, he is on a regimen of six medications. Because he is prone to bleeding and his immune system is compromised, he cannot play rough or be in large crowds where germs may lurk. If a fever spikes, he is taken to the hospital. For months, he could not go to school or be out in public — not an easy thing for an active kid.
“But he just figured it out,” his mother says. “Instead of basketball or riding motorcycles, he taught his friends how to play chess with him.”
Every Friday, his blood is tested, which determines whether he needs a transfusion. In that first month, those transfusions were needed twice a week.
Which brings us to why Xisto was willing to talk with me on a recent evening before his class at Dynamic Taekwondo and Hapkido Academy in the Northeast Heights, his second modified class since his diagnosis.
“Blood,” he says. “Without the blood people donate, I wouldn’t really be here. I need blood to live.”
It has become something of a mission for Xisto and his family to remind people about the importance of donating blood, especially now during the holiday season. When he is well enough, Xisto attends blood drives, introducing himself, thanking donors and putting a face on the reason to donate.
“We need to collect 300 units a day to meet the needs of our hospitals,” says Michele Moore Wright, senior donor recruitment representative for United Blood Services, the only blood provider in New Mexico and the Four Corners region. “The holidays are difficult due to the decrease in donations. People are busy, more people travel, the weather turns nasty and many organizations close, or have minimal staff towards the end of December.”
It has been two weeks since Xisto’s last transfusion, a good sign. But all it takes is a bad bump, a speck of bacteria, a virus, a cut, and he is back to a bag of blood, donated by one of you.
“We have been so lucky to have the support of family, the staff and students at Alameda Elementary, at Dynamic, at the hospital and Dr. (Jodi) Mayfield,” his mother says. “But we must also thank the people we don’t know who donate their blood.”
Xisto has a prepared response for that.
“The idea of getting someone else’s blood is cool,” his notes read. “Because when I think about it, it’s cool that people are helping me.”