Teen Riding High After Long Battle With Leukemia

What a difference a year makes. Mateo Ocampo, an outgoing 18-year-old, knows that better than most.

Mateo spent his 17th birthday in the hospital as part of his long journey to recovery from acute lymphoblastic leukemia. This year, Mateo celebrated his 18th birthday in Mexico with his family, surfing and playing golf.

“It felt really good to be in Mexico, because when you first get the diagnosis, you don’t think you’re going to have the opportunity to do those kinds of things anymore,” Mateo said. “You start to appreciate the little things more; a year ago I didn’t think I was going to be able to travel again or surf again—I never even thought I would make it to my 18th birthday.”

Mateo’s journey started when he was diagnosed in October 2020. After he had begun experiencing headaches, fatigue, and pain throughout his body, doctors noticed Mateo’s sky-high white blood cell count, and he was admitted to the Pediatric Intensive Care Unit at Lucile Packard Children’s Hospital Stanford.

“When I first got the diagnosis, a lot was going through my mind,” Mateo said. “I was very angry, confused, and scared.”

That was when he met Catherine Aftandilian, MD, a pediatric oncologist at Stanford Medicine Children’s Health.

“We started Mateo on chemotherapy right away, and his white blood cell count came down, which was a good sign,” she said. “He was able to go home after a few weeks.”

Most kids who are diagnosed with acute lymphoblastic leukemia (ALL)—the most common childhood cancer—respond well to the first round of treatment with chemotherapy.

But as Mateo put it, during his treatment, he always felt like hurdle after hurdle was placed in his path. The first hurdle was that Mateo’s cancer did not respond to the initial round of chemotherapy.

“After the first round of treatment, the goal is to have no detectable leukemia cells left in the body,” Dr. Aftandilian said. “Mateo’s bone marrow was still 90% leukemia cells.”

She suspected there were several reasons why the chemotherapy was no match for Mateo’s cancer: a genetic mutation in his cancer cells and the fact that teenage patients often have more resistant forms of cancer.

Another treatment uncovers a hidden problem

The team planned to try immunotherapy next, which supercharges a patient’s T cells to attack cancer more effectively. But when doctors collected Mateo’s T cells, they found another hurdle: He had a severe fungal infection.

“We will never know if the fungus was already there before chemo and it found a moment to thrive when the chemo suppressed Mateo’s immune system,” Dr. Aftandilian said. “But it was fortuitous that we caught it early so we could start treating it right away.”

The hospital’s infectious disease and interventional radiology teams helped fight the fungus, but it required another long hospital stay for Mateo, who spent Halloween, Thanksgiving, Christmas, and New Year’s in the hospital.

“It felt like for the longest time if it wasn’t the cancer, it was the fungal infection, and if it wasn’t the fungal infection, it was the cancer—it felt like a draining process that wasn’t going to get better,” he said.

While Mateo was fighting the fungal infection, his doctors tried another treatment for his cancer: inotuzumab, which combines an anticancer drug with an antibody that targets proteins on the surface of leukemia cells. This time, the treatment worked.

“Mateo had no detectable leukemia cells, but he still had the fungal infection,” Dr. Aftandilian said. “Mateo, his family, and his doctors all discussed and decided to give him a stem cell transplant as soon as possible, since we were worried his leukemia might come back.”

It was a brief moment of relief for Mateo and his family before another battle ahead.

“I remember Dr. Aftandilian hugging me and telling me that Mateo was in remission, and I was in total shock, I was so happy,” said Sonia Ocampo, Mateo’s mom.

A small but mighty support system

While Mateo was in the hospital, Sonia was his emotional support, especially since COVID restrictions meant that Mateo couldn’t have visits from his sister or his friends.

“I had to stay strong; I would hold back the tears so he could see that he was going to make it,” Sonia said.

The family credits their faith, friends and family, and church community for helping them get through Mateo’s treatment. Mateo also enjoyed talking with his social worker, Akilah Burford.

“Akilah was one of the few people who lifted up my spirits,” Mateo said.

Burford saw Mateo almost every day and helped him get through periods of depression and anxiety. She also supported Mateo in registering his beloved dog, Benito, as an emotional support animal (ESA).

“I provided emotional support and worked with Mateo around reframing the negative thoughts he had related to his treatment,” Burford said. “We worked on identifying specific things that triggered feelings or thoughts of depression and anxiety and developed a safety plan for managing them when they came up.”

Mateo’s father, David Ocampo, was Mateo’s champion throughout his hospital stays.

“All you can do is advocate for your child—that’s all that’s in your power,” David said. “I would just do my best and push for more answers, and make sure Mateo was as comfortable as possible. It’s a long journey—families have to be patient and just trust the process.”

A stem cell transplant, a chance at a cure

David donated stem cells to Mateo to give him a new immune system that would be able to fight the leukemia if it ever came back.

“Mateo’s immune system didn’t see his leukemia because it came from his body, but with a new immune system from his father, his body will be able to see any leukemia cells and attack them,” said David Shyr, MD, a pediatric stem cell transplantation specialist at Stanford Medicine Children’s Health.

Since Mateo didn’t have any fully matched donors and received a half-matched, or haplo, transplant from his father, his doctors took extra steps to prepare the donor stem cells to engraft in Mateo’s body and reduce the risk of developing severe graft-versus-host disease. Using a process called alpha/beta T-cell depletion, they removed cells from the donor graft that might attack Mateo’s body.

“Alpha/beta T-cell depletion is a very labor-intensive, technically more involved way to do a stem cell transplant,” said Dr. Shyr. “We have more experience with this process than most other hospitals.”

In addition to having this innovative scientific approach on his side heading into transplant, Mateo called on his faith again. Father Mario, a Jesuit priest at Mateo’s high school, Bellarmine College Preparatory, visited Mateo at the hospital and blessed his donor stem cells before the transplant.

The transplant went smoothly, but Mateo developed graft-versus-host disease—yet another hurdle on his road to recovery. Luckily, it responded to the first round of treatment and didn’t become a chronic issue.

A long and winding road to a bright future

Since Mateo’s hospitalization during his birthday last summer, thankfully he hasn’t been admitted to the hospital again. He took extra precautions for more than a year as his immune system grew stronger, and his visits to the clinic have slowly decreased over time.

“You think after hearing you’re in remission, you’re done with treatment, but it’s a longer process than that,” Mateo said. “But things do get better. It doesn’t feel like it right away—you don’t notice the progress you’re making until two to three weeks later. It’s going to be a roller coaster.”

Mateo is now focused on providing support to other kids battling cancer. He has raised money for the Leukemia and Lymphoma Society, wrote a comic book about his experience that he hopes to distribute to patients at the hospital, and has plans to create his own foundation—Mateo Strong. He also dreams of becoming an anesthesiologist.

“I hope to become an anesthesiologist so I can interact with kids who are going through treatment and let them know that I truly understand what they’re going through and develop a deeper and more personal connection,” Mateo said. “I hope to be an inspiration for what they can achieve after treatment.”

This career goal comes as no surprise to Mateo’s care team.

“Mateo is such a caring and thoughtful and charismatic guy,” Dr. Aftandilian said. “As horrible as this experience has been, I know he will use it to help others.”

Mateo and Burford are also working with the Make-a-Wish Foundation to arrange one-on-one surfing lessons with pro surfer Kelly Slater.

“As a teen you probably think getting your license or celebrating your birthday is a given,” said Mateo. “You don’t realize that stuff can be taken away from you at any moment; you take things for granted. This experience has taught me not to take things for granted. I know how valuable life is and how things can change just like that. Every day is a blessing.”

Learn more about Pediatric Leukemia and Lymphoma >