BOTHELL — He wants people to support his cause, but he doesn’t want to be in the spotlight.
Colton Matter, 14, has fought cancer for five years. A support group, “Colton’s Army,” has risen behind him.
It started with his parents, Suzy and Jeff “Butch” Matter, of Bothell, asking for prayers when Colton, then 9, first faced acute lymphoblastic leukemia. Since his diagnosis, Colton’s Army has grown into a community of people fighting for a cause. They’ve raised almost $200,000 to research blood cancers.
Now these fund-raising efforts have come full circle, not only helping to save Colton’s life but also those of millions of others with the insidious disease.
The family has been riding a roller coaster of highs and lows the past five years. Four times they thought they had the cancer beat. And four times it has returned.
With the resolve of an athlete and a lot of faith, Colton has persevered.
He had three life-saving transplants before moving on to ground-breaking clinical trials. The experimental research receives funding from the Leukemia &Lymphoma Society, which is a beneficiary of Colton’s Army.
“You never want to think your child is going to need cutting-edge research to save their life, but that’s Colton,” Suzy Matter said. “We have a lot of hope. God has gotten us through this before, why wouldn’t he again?”
The Matters appreciate the community of support, but Colton shies from attention. He is clearly uncomfortable talking about his cancer, mostly deferring to his parents in an interview. He’s been known to tell people about Colton’s Army without saying that he’s the one with cancer.
Chris Merwin, Colton’s former Little League coach, has seen him do just that. Usually, Merwin said, someone gives the secret away after Colton has made his pitch.
“It catches people off guard how humble he is,” Merwin said. “He likes the support but he doesn’t like people to know it’s for him.”
After treatment in a clinical trial that started last fall, Colton enjoyed nine cancer-free months. He relapsed in July. He is again undergoing chemotherapy while he awaits a new trial to open at the National Institutes of Health.
He started his freshman year at Jackson High School in Mill Creek after a 21-day stint at Seattle Children’s Hospital this summer. Despite the situation, the family remains positive. They call Children’s the “hotel of hope.”
Colton has had hundreds of chemotherapy treatments and has made at least 20 visits to the radiation vault over the years. Now he is undergoing chemotherapy every 10 days. He’s been under anesthesia in the “sleepy room” for surgeries and procedures more than 50 times.
“It’s beyond remarkable how much he’s been through,” Suzy Matter said. “He’s a fighter.”
After more than 300 nights at Seattle Children’s, Colton has learned to eat before he gets stuck with the “horrible” hospital food. A favorite is pasta with mizithra cheese and browned butter from the Old Spaghetti Factory restaurant. He also has discovered that Pizza Hut will deliver to the hospital.
Colton has undergone two bone marrow transplants and a stem cell transplant. His dad, an industrial supply salesman, donated bone marrow to save his life in 2013.
“There’s not many chances, as a father, that you’re able to have that experience,” Butch Matter said. “It’s emotional, amazing, all those words, to be able to give that gift.”
The family takes each day as it comes, doing their best to enjoy life between treatments. Colton and his brother, Case, 12, like to play baseball, soccer, basketball — almost any sport. His parents agree that an athletic mindset of positivity and perseverance runs deep in the family blood. It has helped them face cancer together.
The first sign that something was wrong came in the summer of 2009. Colton had bloodied his arm in a spill from his scooter. He had never been a complainer but continued to have pain after the crash.
Suzy Matter took him to the doctor and eventually Seattle Children’s Hospital. The physicians couldn’t find anything wrong, so they ordered more tests.
Once the blood-cancer diagnosis was confirmed, Colton started chemotherapy. Suzy Matter didn’t sleep much that first night at the hospital.
“I kept thinking, ‘We need an army of prayer warriors,’” she said. “It was going to take more than we could do by ourselves.”
That’s when Colton’s Army began.
Today, the website boasts more than 113,560 visits. Almost 14,000 people have viewed the online journal of Colton’s experiences. The Colton’s Army Facebook page has more than 1,100 likes.
The family sells orange t-shirts and bracelets to help cover medical bills. Breast cancer supporters wear pink; leukemia’s don orange.
Earlier this month, Colton’s Army staged an “orange out” in Mill Creek. Some 300 people showed up wearing the color and helped the family raise $8,000 for the Leukemia &Lymphoma Society in one night.
The family decided to organize several events in September because it is childhood cancer awareness month, Suzy Matter said.
Staci Litchfield, of Mill Creek, takes photographs for people and donates the money she earns to Colton’s Army. She felt a connection to Colton, who played on the same baseball team as her son, Jake, and wanted to help. Litchfield learned she had breast cancer around the same time Colton was diagnosed with leukemia.
“He’s been a great example for me in his outlook on life and his desire to keep living,” Litchfield said. “He always has a smile on his face. He’s a real inspiration to everyone.”
This year, more than 200 people joined forces with Colton’s Army on a team for the Big Climb Seattle. It’s a fund raiser in which people race up 69 flights of stairs in the city’s tallest skyscraper, the Columbia Center tower.
Colton’s Army also raised the most money of any team in 2014, bringing in $105,139 for the Leukemia &Lymphoma Society. Anne Gillingham, executive director for the group’s Washington and Alaska chapter, said few groups have raised more than $100,000 in one year, but Colton’s is still bringing in cash.
The Matters vowed to jump into the Atlantic Ocean if the team surpassed the $100,000 mark. They were a cold and wet family when that happened in March. They were on the East Coast for Colton’s clinical trial.
Most Big Climb teams have about a dozen people. But orange-clad Colton’s Army has grown at the event every year since he was diagnosed. The society gave Colton an award in 2014 for team spirit, an honor that is not handed out every year.
“We look for people who are really inspiring,” Gillingham said. “There’s this really great energy around this family that draws you in and makes you want to help.”
Colton also has participated in the Light the Night fund-raiser each year since his diagnosis. He plans to carry a white lantern, signifying that he is a cancer survivor, at the Seattle event Oct. 25.
Over the years, Colton’s Army has brought in enough money to pay a research scholar for two years, Gillingham said. She finds his story more compelling now that he is part of the research his fund-raising helps support.
Colton received treatments over the past year as part of Dr. Carl June’s clinical trial at Children’s Hospital of Philadelphia. Doctors infected patients’ cells with a modified version of the human immunodeficiency virus that is no longer harmful. It reprograms the immune system, training cells to kill the cancer.
“It looks like a game of Pac-Man under the microscope with the little guy eating up all the cancer,” Gillingham said. “If there weren’t people like Colton, these researchers wouldn’t be where they are. We’re on the brink of some really great discoveries.”
The treatment is showing great promise, she said, with 90 percent of the 35 children in the trial going into remission after receiving it.
Colton was able to return to school and sports after the therapy. His cancer has returned, but the Matters are hoping he can receive similar treatments in another clinical trial that is expected to open this fall.
“It’s really revolutionary,” said Dr. Nancy Boman, a medical doctor and biochemist.
Boman works with Suzy Matter at CTI BioPharma, a company in Seattle that develops medicine for blood cancers. Boman joined Colton’s cause after hearing his story when Suzy Matter interviewed for a job as the doctor’s administrative assistant. Boman was so impressed with the family’s ability to stay positive after so many relapses that she and her Saint Bernard, Tommy, joined the Big Climb team.
“They have so much fun under these less-than-ideal circumstances,” Boman said. “They really live every moment to its fullest, and we can all learn a lot from them.”
Along with the community support, the Matters count on their Christian faith to carry them through tough times. Colton immediately recognized the significance of a frog balloon when his grandmother brought it to the hospital during an early treatment. He told his family that FROG stands for “Fully Rely on God.”
“I looked it up online and sure enough, it’s a thing,” Suzy Matter said. “We’ve been fully relying on God since then.” Now when the family is struggling, they are “frogging.”
Colton faces cancer treatment with a “let’s do this” attitude. He is driven by a desire to get back to the things he enjoys, such as sports. To help keep him motivated to fight cancer each time it returns, he remembers something basketball great Michael Jordan once said.
“He said, ‘I’ve failed over and over and over in my life, and that is why I succeed,’” Colton said during a break from batting practice Thursday.
Colton is training with the Northwest Bandits Baseball Club. His coach, Curt Nelson, said he works hard and never complains. His upbeat attitude is infectious.
“It’s impressive to watch, knowing what he’s been through,” Nelson said. “It makes me look at my life differently. It really puts things in perspective.”
Nelson and Cody Atkinson coach the Bandits and the baseball team at Everett Community College. They helped organize an “orange out” at the college team’s scrimmage, set for 6 p.m. Tuesday at Everett Memorial Stadium. The team plans to dress in orange. Fans are encouraged to do the same. Proceeds will benefit Colton’s Army.
Atkinson said he shared Colton’s story to motivate the college team during the first week of school. It’s a time when players can be overwhelmed by starting classes as well as playing ball.
“These are young guys learning how to be grown men,” Atkinson said. “And here they are learning life lessons from a 14-year-old.”
Like many 14-year-olds, Colton has a date to his homecoming dance. He’s also getting caught up on schoolwork. He said he has mostly As and one C, in a sports medicine course — admittedly a class he should be aceing.
Colton wants to attend Duke University. He hopes to play professional baseball. He’s also working on a back-up plan.
He hasn’t decided whether he’ll start a nonprofit foundation for Colton’s Army, but one thing is certain.
“We’ll always keep Colton’s Army going, even after I’m in remission, because we can raise money to find a cure for other kids,” he said.
Amy Nile: 425-339-3192; anile@heraldnet.com. Twitter: @AmyNileReports.
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