As her husband completes brain tumor treatment, caregiver swims to help others

When Adam Schoen first noticed he was losing his sense of taste, his wife, Claire, wasn’t too worried. She also wasn’t fazed shortly after when he started noticing his balance was off. She didn’t flinch when the ear, nose and throat specialist couldn’t find any fluid in Adam’s ear, or even when the neurologist ordered an MRI.

But in July 2018, when the MRI came back, everything changed. It showed a mass near the stem of Adam’s brain. It was likely cancer, the neurologist said. They soon learned he had medulloblastoma, a type of brain tumor that’s most common in children.

“Getting that news was shocking,” Claire says. “We were terrified.” 

Adam was only 31 years old. The couple had celebrated the birth of their son, Theo, just nine months earlier. They were both active and healthy.

Becoming a brain tumor caregiver

Eight years before Adam’s medulloblastoma diagnosis, Claire had lost her dad to pancreatic cancer. His cancer was found too late, but Claire says the care he received at MD Anderson had been outstanding — so much so that Claire and her family had begun fundraising for MD Anderson.

Adam’s diagnosis brought Claire back to that time. She imagined herself as a widow and a single mom at 34. The couple had been through many ups and downs. They had experienced a miscarriage and their house had flooded twice in Houston’s large rainstorms.

“I struggled with self-pity for a while,” Claire says. “It seemed like we deserved a break. But I know that’s not necessarily how it works.”

But with time, Claire began to see that she could use the tools she had learned during her dad’s cancer treatment to help Adam.

“I’m not really one to think everything happens for a reason, but I know you can learn from everything,” Claire says. “And I knew that there was a lot from my dad’s experience that prepared me for my husband’s diagnosis.”

Specialized brain tumor treatment team makes a difference

After Adam underwent brain surgery at another Houston hospital, he came to MD Anderson for proton therapy. This highly localized type of radiation treatment would attack the cancer and protect the rest of Adam’s brain.

At Adam’s first appointment, he and Claire met with his multidisciplinary care team, led by neuro-oncologist John de Groot, M.D., and radiation oncologist Arnold dela Cruz Paulino, M.D.

Whenever Adam had complications, the specialists on his care team could give him the right treatment. When he had issues with his platelets, he was sent to Vahid Afshar-Kharghan, M.D., who discovered that Adam had an underlying blood disorder -- immune thrombocytopenic purpura.

“We realized this is why you come to MD Anderson,” Claire says. “It made us feel so lucky that it’s less than 30 minutes from home.”

Accepting help during brain tumor treatment

While Adam underwent treatment, Claire struggled to balance the stress that came with it. On a typical day, she’d drop off Theo at day care, head to a meeting at work, then leave work early to take Adam to an appointment.

“It was a challenging balance, but our family and friends really stepped up to help us,” she says. “There was so much going on that I didn’t have the option to be shy about accepting help.”

Family and friends, especially Adam’s parents and Claire’s mom, helped out with babysitting, cooking meals and household chores.

“People got really creative,” Claire says, remembering the friends who signed the couple up for a pick-up and drop-off laundry service.

After six weeks of daily proton therapy treatments, Adam started six rounds of chemotherapy for the drugs lomustine, carboplatin and vincristine. He is currently halfway through his chemotherapy treatment.

A commitment to help other cancer patients

With the end of Adam’s treatment in sight, Claire is doing what she can to help other cancer patients. On May 4, she’ll take part in the inaugural Swim Across America -- Houston Open Water Swim, a fundraiser benefiting Pediatric Oncology and Neuro-Oncology at MD Anderson.

Claire first learned about the event when she saw a flier at one of Adam’s appointments. A former high school swimmer, Claire had participated in swims for charity before.

She asked Dr. de Groot about the event. She watched his eyes light up as he explained that he was MD Anderson’s team captain.

“The event seemed right up my alley to begin with, but when I saw Dr. de Groot, who is typically very stoic, getting excited about it, it made me want to do it even more,” Claire says. “I thought it was so cool that he and his nurse practitioner, Jennifer Johnson, cared enough to be a part of it, after already dedicating so much time to their patients.”

Claire has already raised more than $10,000. Adam was impressed, but not surprised, by his wife’s dedication to the cause. Throughout his cancer treatment, Adam notes that Claire has continually gone above and beyond, whether remembering to ask questions he forgot at a doctor’s appointment, taking care of their young son or becoming friends with everyone on his care team.

 “I’m not surprised by any of it,” Adam says. “But I am proud of her.” 

Swim Across America – Houston Open Water Swim will take place on Saturday, May 4. Register or donate today.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.