Caynen Norberg has taken to sitting on the couch next to his grandfather, Ray Harrison, and holding his hand. Some days, Caynen tells Ray that they’ll both be OK and that their cancer treatments aren’t that bad, then he rubs Ray’s now bald head for good luck.
“They’re Iron Man buddies,” said Karen Harrison, Ray’s wife and Caynen’s grandmother. “Caynen’s doctor told him he put an Iron Man badge on his chest.”
“Not on my chest, it’s in my chest,” said Caynen, proudly lifting his shirt to show off a chemotherapy port located near the center of his chest. Its placement matches the location of the device in Iron Man’s chest that gives the superhero his power.
Ray looked admirably at his grandson then raised his shirt too, revealing his own chemotherapy port located on his chest, right on top of the eagle, globe and anchor of a Marine Corps emblem tattoo.
It has been an unfathomably challenging pandemic for the family. After Karen and Ray discovered a lump on Caynen’s skull in August of 2020, the 7-year-old was diagnosed with Langerhans cell histiocytosis, a rare cancer that, for Caynen, affects his bones. Then, in January of 2021, Ray went in for a routine checkup and doctors found limited-stage small-cell lung cancer (LS-SCLC).
“I’d obviously prefer it be just me,” said Ray of having to face a cancer diagnosis.
But that, and admitting the closing of his esophagus from the radiation therapy is mildly annoying, is about as close to a complaint as you’ll hear from Ray or Karen, who are caregivers for Caynen.
“We’re putting it in God’s hands,” Karen said. “We have a lot of support through family and friends, and Caynen’s school even volunteered to make meals for us.”
A retired journeyman millwright who worked primarily in the printing industry, Ray had settled into his pandemic life like many others.
He and Karen spent their days in their Milwaukee home, guiding their grandson through virtual school, careful to avoid exposing his compromised immune system as the pandemic raged through the fall and winter.
“We’re not taking that chance,” Ray said.
Before his own diagnosis, Ray had zero symptoms or any clue he had cancer. Still, the lung cancer diagnosis wasn’t entirely a surprise. Ray is a Marine Corps veteran who was exposed to Agent Orange during his 13 months and 15 days serving in Vietnam. In fact, at just 70 years old, Ray isn’t even the first person he knows whose Agent Orange exposure has led to cancer.
“I’ve had several friends who have already passed away from it,” he said.
Agent Orange was a tactical herbicide used during the Vietnam War to clear vegetation for military operations. Today the chemical is considered a known carcinogen, and the U.S. Department of Veteran Affairs (VA) recognizes that Agent Orange exposure during military service is the probable cause of certain types of cancers, including lung cancers.
Ray said his doctors are certain of the role Agent Orange played in his diagnosis and that the VA has provided him with full disability benefits.
Upon his cancer diagnosis, Ray was quickly approached about participating in a clinical trial by Karen Globke, RN, research coordinator for Advocate Aurora Research Institute, and Laura McGartland, MD, his treating oncologist at Aurora St. Luke’s Medical Center.
“What I was told was that it could not only help me but other patients too,” he said. “I said, ‘OK, fine. Let’s do it. What do I have to lose?’”
Neither Ray nor his wife had any familiarity with clinical trials, but that didn’t matter one bit for Ray, even after he was informed that, in a randomized study, he might not receive the study drug.
“I’ve been helping people all my life,” he said. “That’s not going to stop now. If someone will eventually get a benefit from this, if I can help someone else, I won.”
The study, sponsored by the National Cancer Institute and led by NRG Oncology and The Alliance for Clinical Trials in Oncology, evaluates whether doctors can lower the chance of LS-SCLC growing or spreading by adding an immunotherapy drug called atezolizumab to the standard treatment of chemotherapy and radiation therapy.
“Although the standard treatment has been shown to substantially reduce tumor size for patients like Ray, relapse occurs early and often, limiting longterm survival of the disease to just 25% of patients,” said hematologist and oncologist Shamsuddin Virani, MD, the Research Institute’s principal investigator for the study. “We need to do better than that for these patients, which is why researchers are studying promising combination treatments, such as chemoradiation plus immunotherapies.”
Previous studies have already demonstrated the efficacy of other immunotherapy drugs in patients with widespread or relapsed SCLC, and researchers have found evidence that atezolizumab effectively shrinks tumors in patients with a different type of lung cancer.
Someday soon, Ray hopes he and Karen can get back to traveling, or even just “doing things together outside of our four walls.”
But, for now, he and Caynen are continuing their treatments, drawing off each other’s strength and optimism.
“Our immune systems are down but not out,” Ray said. “We’re going to beat this.”
To learn more about Advocate Aurora’s research, visit aah.org/research.