Traveling through Washington’s vast forests on unmarked dirt roads, Matt and Barrett Justis had been traversing rough terrain for miles when their tent poles fell off the back of their motorcycles.
Without the poles, the father and son had to sleep under the stars — and found themselves with front-row seats to a meteor shower.
The stars that blazed across the sky resonated with the duo. It was a sign to them that Matt Justis’ oldest son, Zain Justis, who had died two years earlier at 18 from a rare form of non-Hodgkin’s lymphoma and for whom their ride was dedicated, was right there beside them.
“If they didn’t lose their poles, they would have never slept under the stars,” said Linnea Justis. “It was clear that Zain was with us that whole time.”
The Zain Justis Foundation is a nonprofit organization created by president Matt Justis, and co-president Linnea Justis in honor of their oldest son, who died in 2021 from primary mediastinal B-cell lymphoma — a rare subtype of non-Hodgkin’s lymphoma in adolescents. The foundation is dedicated to keeping Zain’s memory alive and encouraging clinical research for rare types of cancers that affect kids.
The honorary motorcycle trip, later named “The Extra Mile” by Zain’s parents, was part of a 575-mile journey from Stevenson to the Canadian border using the Backcountry Discovery Route. The route, which took around six days to complete, began in Stevenson and ended at the Canadian border at Nighthawk in Okanogan County.
It was mid-August when Matt, Linnea and Barrett Justis revved up their motorcycles and set out, following a schoolwide send-off at Washougal High School. Photographer Ben Leisman chronicled the trip, which he is transforming into a documentary to be finished toward the end of the year.
“Through our grieving process, we developed the Zain Justis Foundation. As a piece of that process I came up with the concept of The Extra Mile — using that motorcycle adventure as a vehicle to raise awareness for our mission,” Matt Justis said.
‘Cautious daredevil’
On an early fall morning, Matt and Linnea Justis talked about Zain at their home in Washougal, describing their son as a cautious daredevil.
“He was always analytical, but he was also super daring,” Matt Justis said. “There was this kind of this yin and yang aspect of his personality.”
Linnea Justis described her son as magnetic. “Everyone was drawn to him,” she said.
Zain Justis was born on Sept. 5, 2003, and grew up in Washougal alongside his brother, parents and their family pets. Growing up, Zain and Barrett bonded over their shared love of music. Zain played bass and guitar. Barrett plays the drums. They would jam alongside local house bands at Billy Blues Bar & Grill in Hazel Dell. Zain attended Washougal High School and enjoyed fishing, playing basketball and spending time with his pets.
He was 17 when he was diagnosed with primary mediastinal B-cell lymphoma. It was during the height of COVID-19, and he’d been dealing with nausea, weight loss and pain for the past six months.
“He didn’t have the words to describe it. He just kept saying he just didn’t like the way he feels,” Linnea Justis said. “For a whole year, we didn’t know anything, but he never questioned it. For someone who didn’t like change, he gave it his all.”
On Oct. 31, 2020, the family finally received answers at an emergency room visit, when a CT scan showed tumors in Zain’s chest. After the diagnosis, Zain immediately began chemotherapy.
“When you receive a diagnosis like that, it’s literally drinking from a firehose,” Matt Justis said. “With the kind of cancer that was as aggressive as Zain’s was, we didn’t have time to seek other options.”
Primary mediastinal large B-cell lymphoma is an aggressive cancer in a type of white blood cell called a B cell, and it originates in the thoracic cavity. It predominantly affects adolescents and young adults.
False hope, and a wedding
Soon after Zain was diagnosed, Linnea Justis received a call from his oncologist who told her that Zain’s type of cancer is treatable and curable, and he’d soon be starting his senior year of high school.
She said she will never forget that phone call.
“I think it gave us a bit of a sense of false hope,” Matt Justis added. “We don’t think that we’re naive, but at the time, you listen to people that you believe have more knowledge about certain things. You latch on to what is said.”
Throughout his diagnosis and treatment, Linnea Justis said Zain’s kind spirit never wavered. His parents said he gave everything to the treatments without ever showing fear or anger; they never had to ask him to fight.
Once it was clear Zain’s case was terminal, Linnea Justis asked him what he was afraid to miss the most. Zain said it was marrying his girlfriend, Amy Benson.
The family planned the wedding within six hours and invited their families from out of town. A dress that Linnea had altered for her wedding anniversary years ago ended up being Amy’s wedding dress.
The ceremony took place Sept. 24, 2021, on the deck of the Justis family’s house, where the Rev. Tom Warne III officiated.
“Everything happened so fast, but it was enough to give you goosebumps,” Linnea said.
Four days later, on Sept. 29, 2021, Zain died.
Building the foundation
Not long after Zain passed, Matt Justis began creating a foundation in his son’s name. The family hopes it will raise awareness about rare forms of cancer and also highlight the need for research on primary mediastinal B-cell lymphoma. Through the foundation, Matt and Linnea Justis met Dr. Lisa Giulino-Roth, professor and director of pediatric oncology at Weill Cornell University. Using Zain’s stem cells, Giulino-Roth has dedicated her research and clinical practice to the disease.
“Knowing that Zain is physically present in these studies makes the work that much more unique,” Linnea Justis said.
“Because Zain’s type of cancer is so rare, there have been very few opportunities to understand the biology of the disease,” Giulino-Roth said during a research video. “We’re bringing together institutions to pull together resources and specifically look at tumor biopsies from PMBCL.”
According to the National Cancer Institute, non-Hodgkins lymphoma is one of the most common cancers in the United States, accounting for about 4 percent of all cancers, while primary mediastinal B-cell lymphoma is the most common subtype of non-Hodgkin’s lymphoma occurring in children and young adults.
Due to its rarity, research for cancers like PMBCL aren’t well funded, Roth said. “That is why it’s important for us to partner with nonprofits like the Zain Justis Foundation, to provide the essential funding to get these projects off the ground.”
Strength, resistance
In Maori culture, the fern represents strength, stubborn resistance, and enduring power. The Justis family saw a fern at one of Zain’s treatment centers in Seattle, and since then, it remains a symbol that resonates with the family. Linnea Justis has a fern tattoo on her right arm.
The Zain Justis Foundation partners with Washougal High School to give away annual scholarships to students who represent qualities that Zain had. “It’s not about grades. It’s about your morals and values and having the characteristics, traits that Zain had,” Linnea Justis said. “Better because of him” is the motto the Zain Justis Foundation has held close and incorporated throughout its mission. The meaning comes from the feeling of having experienced Zain in their lives.
“I was trying to write Zain’s obituary, trying to create an epitaph that summarizes his life,” Matt Justis said. “It is an unimaginable thing to have to do for your child. It just hit me that our lives are better because he was in it.”
