Caring for Patients with Complex Conditions

Peter Hanson and Alice Bertaina, MD, PhD

It makes sense that Peter Hanson’s favorite subject is math. With his complex health history, he has faced enough unknowns in his 15 years to last a lifetime. Math is calming, with its black-and-white answers.

“I enjoy math because there’s a said answer—as opposed to other subjects that are more abstract,” Peter says.

One subject that’s more abstract is his health history. Many of Peter’s health conditions are rare. Some are downright novel. Helping Peter survive has required doctors, caregivers, and his family to team up and forge ahead into new medical frontiers.

“Many times, we thought his problems couldn’t be solved, but then we’d see him live through it. Seeing him in such good shape today gives us all hope,” says Katharine Hanson, Peter’s mom.

Peter’s first big challenge was his heart. He was born with one functional heart chamber rather than two, and his heart developed on the wrong side of his chest. Early on, doctors performed surgery to rework his circulation to help his heart function, but it slowly began to fail. He ended up needing a heart transplant at age 2.

By the time a heart became available, Peter was in intensive care on a breathing machine, in a medically induced coma. He was receiving high doses of medicines to keep his heart going, and his liver was failing. A team of experts across specialties pulled together to decide the best next move.

“We questioned whether or not he could survive a transplant, but many of us believed his liver would get better once he had a normal functioning heart. Fortunately, that was the case,” says Daniel Bernstein, MD, the pediatric cardiologist who treated Peter.

Peter did remarkably well with his new heart. Despite his having to deal with a broken leg within months after the transplant, the next five years were mostly worry-free, allowing Peter to simply be a kid—growing, learning, and playing.

At age 7, Peter started having trouble breathing. His pediatric pulmonologist, Carol Conrad, MD, suspected ciliary dyskinesia—a condition in which tiny hairlike cells in the lungs don’t function properly. Without healthy cilia to move mucus, Peter contracted pneumonia, again and again. His lungs also tested positive for mold spores, and he was plagued by ear infections.

“With Peter and other complex care patients, it takes a village. We put our best minds together to think inside and outside the box,” says Dr. Conrad. “None of us can figure it out alone.”

Then, at age 8, Peter started losing his hair and developing rashes. He was diagnosed with angioimmunoblastic T-cell lymphoma, an adult cancer never before seen in a child, which finally provided an explanation for some of his lung problems. In 2012, Peter was the only child in the world with this type of lymphoma, and there were no guiding protocols for how to treat it in children.

As leaders in pediatric cancer care, Packard Children’s Bass Center for Childhood Cancer and Blood Diseases team went to work. First, Peter was given high doses of tailored chemotherapy, without much improvement. Next, he received a stem cell transplant. Since a full donor match was unavailable, doctors chose to use his own bone marrow to bolster his immune system.

“Peter did really well for almost a year,” says Kenneth Weinberg, MD, pediatric stem cell transplant doctor. “We watched tumor cells in his blood drop from 10,000 to 100 and even to 10, but never to zero. We needed zero to deem him cancer-free.”

It was time for a brand-new approach. Enter Alice Bertaina, MD, PhD—the worldwide pioneer and foremost expert in a revolutionary strategy called alpha/beta T-cell depleted haploidentical stem cell transplantation. This leading-edge stem cell transplant lets doctors use cells from a partially matched donor by selectively eliminating “bad cells” (alpha/beta T cells) to reduce the risk of graft-versus-host disease (GVHD).

“What makes the alpha/beta T-cell depleted approach so groundbreaking is that it expands options for children who don’t have a fully matched donor. We can use virtually any partially matched related or unrelated donor,” says Dr. Bertaina. “It’s also the safest choice, partly because patients don’t need any immunosuppressive medication afterward.”

Packard Children’s was one of the first hospitals in the Bay Area to offer this innovative type of stem cell transplant, and we’re a leader in providing it to children with complex health needs.

“We are part of a culture here at Packard Children’s that says we need to keep our eye on the horizon. We can’t simply focus on current treatments; we have to look beyond. If we hadn’t done that, Peter wouldn’t be here today,” Dr. Bernstein says.

Both Katharine and her husband, Charles, volunteered to be donors, but Katharine’s genetics were a slightly better fit.

“They flipped a coin, but I had my thumb on the coin,” Dr. Weinberg says.

Dr. Bertaina collected stem cells from Katharine’s blood. She then removed immune fighter cells called alpha/beta T cells to lessen Peter’s chance of developing GVHD.

If that wasn’t complex enough, the path ahead became even less clear because Peter is one of only a few people in the world with a transplanted heart to receive a stem cell transplant. The team worried that his mother’s stem cells might attack his heart, even if they didn’t attack other parts of his body.

Within a few months of receiving the alpha/beta T-cell depleted haploidentical stem cell transplant, Peter was back on the basketball court making foul shots.

“The stem cell transplant was by far the best treatment he received. It allowed him to feel well most of the time and be a regular kid,” Katharine says.

Today, two years later, Peter is just that—a regular kid. He’s a sophomore at Menlo School in Atherton, where both of his parents teach history. He enjoys hanging out with friends, practicing driving in parking lots, taking cooking classes, acting, working at a part-time job, excelling at school, and thinking about his future. This past summer he attended an EXPLO Medical Rounds camp at Wellesley College, which strengthened his interest in medicine as a career.

“I might want to be a doctor. The camp made me a lot more interested,” Peter says.

“Peter is so smart. It wouldn’t surprise me at all if he goes to medical school. He’d be an outstanding physician,” Dr. Conrad says. “He looks at a puzzle and tries to solve it, and that’s exactly what his complex care exemplified.”

Even though Peter’s doctors keep a close eye on him, they all agree that he’s doing great. Peter receives ongoing injections of his mother’s blood to ward off cancer cells. He’ll need them indefinitely until advances allow him to create his own fighter T cells someday.

“Peter is one of the most resilient people, not just children, I have ever known,” Dr. Weinberg says.

Even though he’s grateful for the incredible care he has received, Peter’s happy that he doesn’t have to go to the hospital as often anymore. He’d rather be at his best friend’s house playing ping-pong or video games, or at home solving a math problem—reveling in the satisfaction that the answer won’t change.