Second Opinion Uncovers Chronic GvHD and Gives Teen His Life Back

Years after a stem cell transplant, teen suffering from unconventional symptoms finds answers at Stanford

Instead of doing regular teenage things—joking with his friends, playing sports—13-year-old Austin Bolender was going for blood transfusions twice a week, taking a cocktail of medicines that left him worn down, and coping with high fevers and rashes.

This exhausting cycle continued for nearly two years, and it all became too hard to take. Austin stopped playing his favorite sport, soccer. He quit going to school. He lost hope. His parents, Greg and Amy, couldn’t stand to see him suffering, and his doctors near his home were at a loss.

Cancer as a young boy

When Austin was 8 years old, he was diagnosed with lymphoblastic leukemia, a type of blood and bone marrow cancer. Part of his treatment was a stem cell transplant—when cells that will become blood cells are taken from a donor and placed in the patient’s bone marrow. The bone marrow is conditioned, or readied, via chemotherapy, which destroys the cancer cells and makes room for the new stem cells. Over time, the new cells grow within the bone marrow and are usually better able to identify and attack cancer cells than the patient’s old cells.

Austin received his stem cell transplant at age 9. He started feeling better after a few months and, much to his and his parents’ relief, returned to being a regular kid: playing soccer and wrestling with his little brother, Dominic, with dreams of going to WrestleMania someday. But then graft-versus-host disease (GvHD)—when donor T cells see the body as foreign and attack it—set in and destroyed his plans. For the next several years, Austin found himself getting frequent blood transfusions, taking a series of medications, and still feeling terrible.

In an attempt to identify a diagnosis responsible for all these new symptoms, his hometown doctor reached out to Alice Bertaina, MD, PhD, a stem cell transplant specialist with Stanford Medicine Children’s Health, to pick her brain on what could possibly be happening.

“I told his local doctor that I thought it might be chronic GvHD, despite him not having other classic symptoms of the disease,” Dr. Bertaina says.

Headed to Stanford Children’s for a second opinion

Austin received a second opinion at Stanford Children’s, where Kenneth Weinberg, MD, a pediatric stem cell transplant specialist, had established a type of analysis that would test Dr. Bertaina’s hypothesis that Austin had bone marrow involvement of GvHD. Dr. Weinberg’s laboratory was able to identify the types of immune cells that were damaging the bone marrow so that a new treatment plan could be directed at controlling just those cells. His parents were thrilled to hear that there might be a solution to Austin’s pain and suffering.

“During the second opinion at Stanford Children’s, they ran bloodwork that changed our lives,” says Greg, Austin’s dad.

Indeed, a bone marrow test at Stanford Children’s proved Dr. Bertaina’s suspicions. T cells, or immune cells, from the stem cell transplant had infiltrated Austin’s bone marrow and were attacking his healthy cells, causing aplastic anemia—a rare and serious condition where the body cannot make enough new blood cells.

“The stakes for the treatment were high, because the other treatment option that was being proposed was for Austin to have a second stem cell transplant, the usual treatment for aplastic anemia,” Dr. Weinberg says.

“Austin was in a life-threatening situation,” Dr. Bertaina says. “We were able to target our therapy with four different medicines to control the T cells while allowing the bone marrow to produce normal blood cells again.”

It took a few months for the drug therapy to take effect, with Dr. Bertaina and Dr. Weinberg working in unison with Austin’s local doctor to tweak his medicines, but he started feeling better after just three months.

“To hear Dr. Bertaina say, ‘This is what it is,’ was such a sense of excitement, joy, and especially relief,” Greg says. “With the new therapy, he got better every day, and now he sees the end of the road.”  

Maybe Austin’s mom, Amy, who always suspected that the GvHD hadn’t gone away, said it best: “We’re getting our old Austin back.”

Bone marrow analysis developed at Stanford detects GvHD

Dr. Bertaina wants to spread the word in the medical community that unexplained symptoms after stem cell transplant could be chronic GvHD in children, even if it doesn’t look like it. She’s grateful to have the advanced tools on hand to shed light on lingering GvHD—the bone marrow analysis developed by Dr. Weinberg—rather than relying only on the usual clinical diagnosis of GvHD.

Dr. Weinberg has since used the same analysis to diagnose two adult patients with GvHD in their bone marrow. They were successfully treated with a medication plan based on the one used to control Austin’s GvHD.

“Austin’s bone marrow is perfectly normal, and there’s no sign of GvHD clinically. The last time I saw him, he was joking around and feeling positive,” Dr. Bertaina says. “It’s rewarding to know that we can validate this diagnosis and give kids a potential future.”

“Just as exciting as the initial response of Austin’s bone marrow to the specialized treatment has been the fact that his blood cell production has remained normal, even after the medications have been cut back,” Dr. Weinberg says.

Greg and Amy say they feel an amazing sense of gratitude. They don’t know where Austin would be today if he hadn’t received care at Stanford Children’s.

“We are so grateful for Stanford Children’s. Without their care, we wouldn’t have our son. Dr. Bertaina and Dr. Weinberg will always have a special place in our hearts,” Amy says.

Austin appreciated how his doctors listened to him and took his opinion seriously on how he wanted to receive care. He felt comfortable advocating for himself. While his GvHD can’t be completely cured, it is under good control, and he’s down to just one or two medications. His doctors continue to watch him closely.

Back to being a regular teen

Austin has his life back. He’s attending school, and he even finds joy in doing homework. He’s playing soccer, with hopes of making a competitive team next year. He’s also discovering a hidden talent—drawing with charcoal, pastels, and colored pencils. And he and his family plan to check his dream of attending WrestleMania off their bucket list. “He’s back to his old self,” Greg concludes. “He’s enjoying just living a normal high school life.”

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