Someday in the not-so-distant future, 16-year-old Vaughn Wilson may save your home. Or your life.
He is finishing up high school, thinking about college, and he has big plans. An aviation fanatic who flew at 13 with the Young Eagles (an aviation education program for youth), Vaughn hopes to pilot helicopters, either as a firefighter or as part of a medevac team, rushing the injured to the hospital.
In a way, saving the lives of strangers would be a kind of payback for Vaughn. A stranger — a stem cell donor from Germany — saved his.
Growing up in the Los Feliz neighborhood of Los Angeles, Vaughn rarely passed up an opportunity to zoom, schuss or roll. “I like to bike, to ski. I love cars and planes,” he said. “And I climb mountains.”
Nothing appeared to slow him down, until one day in the fall of 2022 when suddenly a biking trip left him with intense fatigue and back pain. Not long after, during a Thanksgiving ski outing, Vaughn took a spill and had difficulty recovering.
No one at the emergency room thought anything was unusually wrong. Most injured teens who show up in the ER get patched up and sent on their way. However, Vaughn’s parents, Brian and Renee Dake Wilson, were suspicious. Vaughn’s sister Collette had just emerged from a long battle with leukemia that left her with osteonecrosis, a condition that weakens and frequently breaks bones, requiring multiple surgeries.
Another incident happened during Christmas break. Vaughn and some friends were racing their go-carts and — as often happens — they crashed. The others walked away. Not Vaughn.
“He was crying,” recalled Renee. “He was in big pain.”
Now the ER doctors put it all together, especially after examining family records and learning about Collette. They ordered blood tests. “Vaughn’s calcium levels were through the roof,” said Renee. High calcium can sometimes point to cancer.
A Precursor-B Lymphoblastic Leukemia Diagnosis
In short order, the diagnosis came. Like his sister, Vaughn had precursor-B lymphoblastic leukemia, an aggressive disease in which too many immature white blood cells are found in the bone marrow and blood.
“It was definitely not fun,” said Vaughn. “In fact, I was really surprised because I thought the odds would be so low that two of us would get the same thing.”
The news shocked Vaughn’s parents.
“We thought we were done,” said Renee. “We were going to travel, take ski trips…” her voice trails off. “But Vaughn was diagnosed right after Collette had her last surgery. And it changed the course of Vaughn’s life.”
'She had a solid plan for me. It was good to hear.'
Vaughn Wilson on his physician, Nicole Karras, M.D.
While two siblings getting the same cancer appears about as likely as being hit by lightning twice, it does happen, according to oncology experts. In fact, although still a rare disease, the chances of being diagnosed with acute lymphoblastic leukemia go up if a sibling has been stricken with the disease. Genetics can be involved sometimes in childhood leukemias; the Wilson siblings were tested for a genetic component, but none was found. Researchers also suspect that previous infections from viruses may lead to development of some forms of leukemia in certain patients who are immunologically susceptible.
Luckily, leukemia is highly treatable in young people: survival rates approach 75% or more. At first, Vaughn received the same standard chemotherapy that Collette had had. He endured the expected side effects: fatigue, nausea and hair loss, which he handled by getting “a lot of weird haircuts.”
Pursuing a Stem Cell Transplant
Fortunately, Vaughn did not suffer the same bone difficulties as his sister. But the chemo failed to completely rid his system of the cancer. He had just one remaining option: a stem cell transplant. His parents contacted City of Hope, where nearly 20,000 transplants have been performed.
“I have a couple of friends who had transplants at City of Hope,” Renee said.
They were soon making friends with pediatric hematologist-oncologist Nicole Karras, M.D., who treats kids with leukemia every day.
“They are lovely people,” said Dr. Karras, associate clinical professor at City of Hope Children’s Cancer Center. “And Vaughn is a remarkable teen, climbing mountains, doing all kinds of school activities.”
There was, however, some leftover concern from Collette’s experience. (Colette was not treated at City of Hope.)
“They were very nervous,” continued Dr. Karras. “They expected the same horrible side effects that their daughter had gone through. I explained that every case is different, every person is different.”
Vaughn and his folks appreciated Dr. Karras’ straightforward approach.
“She had a solid plan for me,” said Vaughn. “It was good to hear.”
“And she gave us time,” continued Renee. “She let us ask questions, showed us drawings. She made everything easier, made us feel comfortable.”
Seeking a Stem Cell Donor
The first priority would be to find a stem cell donor. Sometimes this can be a nerve-wracking time, as the family wonders and worries what will happen. But the odds are quite favorable when the patient is Caucasian and of European background. “I was optimistic,” Dr. Karras said.
The search took about two months, and of the potential donors that were found, Dr. Karras selected a young woman from Germany.
The actual transplant — similar to an IV infusion — is simple and takes relatively little time. It is the prep beforehand, and the recovery after, where the patient faces his greatest challenges.
First, Vaughn spent a few weeks receiving the immunotherapy drug blinatumomab from a portable pack. Then it was 10 days in the hospital for radiation and large doses of chemotherapy — much larger than he’d received previously — “to annihilate his bone marrow,” explained Dr. Karras, and make room for the donated cells.
The chemotherapy did a number on Vaughn’s digestive system. “I was not in good shape,” he remembered.
“But it was the period after the transplant that was the hardest.”
That’s also when Vaughn’s family, friends and City of Hope’s supportive care specialists all came together to help.
It can be several weeks before the donated cells engraft and the patient’s condition improves. Brian and Renee went into tag team mode, each spending three days at Vaughn’s bedside, then three days at home, taking care of the rest of the family as well as the architectural firm they run together.
Vaughn kept himself busy with help from City of Hope’s supportive care staff, especially pediatric and adolescent and young adult activities coordinator Davis Wideman.
“Davis was great,” said Vaughn. “We played a lot of foosball. And he took me upstairs to hang out with a bunch of dogs!” (Pet therapy is quite popular at City of Hope.)
Fighting GVHD
Vaughn experienced some mild graft-versus-host disease, as many transplant patients do. He remembers how, when he developed mouth sores, “City of Hope had this ‘mouth sore’ person who came in twice a day with all kinds of different treatments.”
Still, nothing compared to the moment when Vaughn was pronounced well enough to go home. “That was the best part ever,” he says. “To see my dog again, to sleep in my own bed, nobody waking you up in the middle of the night to check your blood pressure.”
One year later, Vaughn and his parents are amazed at how healthy he is. It is difficult for them to remember how sick he had been. Vaughn no longer takes immunosuppressant drugs, he’s back at school, doing all his favorite things once again. Dr. Karras will continue to monitor him, making sure he remains disease-free. “I’ll take a bigger breath after two years,” she smiled.
If there’s a lesson here, Renee says, it’s patience.
“I mean, Collette is in remission, Vaughn is in remission, and it’s OK,” she said. “It’s important to remember that there is an end point. It can take a long time to get to the light at the end of the tunnel. But it does get better eventually.”
Main image: Vaughn celebrates completion of his treatment with his City of Hope care team.
The Department of Supportive Care Medicine at City of Hope was the first in the United States to fully integrate across supportive care specialties and into the patient’s clinical care and is one of the largest programs of its kind today. The program provides cancer patients with comprehensive physical, psychological, social and practical support services, including care navigation; survivorship programs; specialists in cancer and aging; child life specialists; psychological and spiritual counseling; pain management; integrative medicine, such as yoga, massage and meditation; and more — all with a focus on maximizing patient and family strengths, quality of life and the ability to best engage in their treatment journey and beyond. Thanks to a gift from The Sheri and Les Biller Family Foundation, City of Hope is working to expand this offering across its cancer care system and to advocate for establishing supportive care as a standard best practice for cancer care in the United States.