MONROE — With three small children, the Mayes home on the north slope of Monroe is a blissfully chaotic place where Mom and Dad often reheat the cups of cold coffee they don’t have time to drink.
Homework gets done at the kitchen table. Electronic games are allowed in moderation and the family attends church every Sunday.
At 7, Koen is the eldest child. He’s compassionate, intuitive and formidable with a plastic sword.
Lucy, age 3, is the youngest. She’s a climber and into everything. In many ways, she is like her mother, Charlene — who prefers being called Charlie — when she was a child. The parallel is so strong that Charlie’s own mom likes to hug her and say, “Ha, ha” in a what-goes-around-comes-around kind of way.
The middle child is Gavin. He is 5 and quite different from his siblings. In many ways, he has brought a tight-knit family even closer as he tries to slay the dragon inside him.
Gavin has been a child of many surprises.
When he was 2, he would spend hours alone in a corner where he’d face the wall and repetitively line up his Hot Wheels into different formations. When others entered the room, he would not turn to look.
Gavin was late to talk. Oh, how his parents craved those breakthrough words of acknowledgment, for him to look at them and say “Momma” or “Dadda.”
Instead, when Gavin was well past 3, he gazed at his father from his car seat and said, “cantaloupe.” It was random, apparently from an iPad sorting game for preschoolers.
Eventually, Gavin did talk — on his own terms.
His parents learned to converse with him through lines from animated Disney movies, including “Cars,”
“Good night, Gavin,” his father Ken would say as he tucked him in.
“Good night, Finn McMissile,” Gavin would reply in the British accent of the cartoon spy car.
Gavin also was a wanderer. Elevated door locks and fenced yards couldn’t hold him. Once, his father lost him at a mall. The panicked dad began looking for a security officer. As he passed the Disney store, he spotted Gavin sitting on the floor watching Mickey Mouse on a small TV.
In September 2012, doctors at Seattle Children’s Hospital confirmed what Ken and Charlie Mayes already were beginning to suspect. Their son has autism.
In some ways, it was a relief. At least they finally knew and could get him help.
Six months later, the boy of many surprises would spring one more. Three days shy of his fourth birthday, he was diagnosed with cancer.
Gavin had been sick for more than a month. Fevers came and went, only to return. His lips and fingers turned blue when he coughed. It seemed an endless flu. Gavin grew listless, sometimes sleeping all day.
Charlie took him to the pediatrician’s office four times.
On March 15, 2013 — a Friday — Ken joined them for a 4:30 p.m. appointment. They insisted a sample of their son’s blood be taken. Gavin was anemic and his liver was enlarged.
They arrived at the Children’s Hospital emergency room around 6:30 p.m. A phlebotomist drew another sample of Gavin’s blood. Medical staff hovered over the frightened boy, preparing him for a transfusion. Gavin screamed and thrashed at the strangers’ touch.
Charlie surveyed the tube that pumped blood into her son and watched a pinkish hue return to Gavin’s pale cheeks. Nothing seemed real to her.
Around 11 p.m., a pediatric oncologist — a doctor who treats children’s cancers — explained to them what leukemia was. As midnight approached, a woman from the cancer center confirmed the diagnosis.
Ken tried to process her words as Gavin slept peacefully nearby.
After hearing the term leukemia, Charlie had no other memory of what the woman said.
In that moment, it was as though a glass that was their life had shattered into a thousand shards. There was a time when everything had seemed ideal for the young couple. Ken went to work at a good job and refereed high school football on the side. Charlie stayed home with the kids in a pleasant middle-class neighborhood in the Skykomish Valley.
Now, instead of getting medicine and heading home, they migrated toward the cancer ward.
Charlie called her mom, Donna Rood, from the hospital. It was a short conversation.
“Remember, God is big,” Rood told her.
After a nine-day hospital stay, as doctors planned Gavin’s long-term treatment, Charlie started a movie for the kids and slipped away.
The weight of it all came crashing down.
Koen, then in kindergarten, found her weeping on the kitchen floor. He hugged her without saying a word.
It was exactly what she needed.
Leukemia is a cancer of the white blood cells that are produced in the bone marrow. The cells are supposed to protect the body against germs and infectious disease.
Gavin has a fast-developing version called Acute Lymphoblastic Leukemia. Not only were his defective white cells not doing their job, they also were crowding out his red blood cells, which carry oxygen in the blood stream.
By the time he arrived at Children’s Hospital, his red blood cell count had dropped to dangerously low levels. Left untreated, doctors believed that Gavin was a few days away from heart failure.
At the time, Gavin was a boy of few words. It was hard to gauge what he did and didn’t understand.
Charlie and Ken knew he couldn’t comprehend cancer, let alone chemotherapy.
They explained to him that his blood was sick, but that didn’t register either. They had to get creative. So they told him it was as though there was a dragon that his body was fighting.
Gavin wanted to slay the dragon.
For two months in 2013, during some of the darkest days of chemotherapy, Charlie kept an online journal.
It shared a mother’s anguish as she watched — and abetted in — her son’s suffering through a treatment that could save him.
She wrote about his pleas — “Momma… No hospital. PWEASE!!” — and bribing him to the car with a Disney movie.
She described a day when the medical staff started the infusions of chemo and wrapped Gavin up “like a tortilla, in a giant blanket.” She wrote how she helped hold him down so the nurses could snake the tubes through his nose and into his stomach.
“He was supposed to be under for this, but the bugger ate Fruit Loops so now he’s wide awake,” Charlie wrote. “He gags, they get it down, he starts throwing up, his nose is bleeding and he is reaching such high levels of screaming that I’m sure only dogs can hear him.”
That same day, a nurse shared the schedule for Gavin’s next two months — a particularly grueling treatment stage called “Delayed Intensification.”
“Halfway through the discussion, I’m crying. The nurse holds me. We have a bonding moment. Then I nut up and get back to business. The short and the long of it is this: Gavin will lose all his hair, get really tired, nauseated, moody, gain a lot of weight despite the throwing up, get sores and his counts will plummet.”
And that’s exactly what happened.
Two weeks later, she described his exhaustion, her guilt and their bond:
“He feels horrible and whenever he starts to feel good, I sign a paper okaying another med to bring him back down. He doesn’t understand that it’s to save his life.
“He just gets that Mommy pushes steroids through his tube whether he wants them or not. And yet somehow he still loves me. Still wants to sleep in Mommy’s bed holding my hand. Six more weeks to go. Praying to God that we make it. Cause right now, just putting one foot in front of the other seems pretty damn hard.”
In some ways, Gavin’s autism might have helped him through the worst.
At least that’s how it seemed in September 2013.
When Gavin arrived at the hospital, he already was in the zone. It had become routine.
Routines and structure make him feel safe. In the waiting room he’d bring out his iPad and lock on to a cartoon, while sipping from a juice box, seemingly oblivious to the movements around him.
After a few minutes a nurse took his height, weight and vitals before he headed off to the treatment area. He continued to watch the cartoons, often talking out loud to himself, repeating words and phrases from the show. The mimicking — called echolalia — is common among some people on the autism spectrum.
Gavin’s skin was white, almost translucent. Blue veins stretched across the pale, completely smooth top of his head. In the large leather chair, he appeared small and even younger than his four years.
Charlie, who could pass for her son’s older sister, sat in a chair next to him. Nurses attached tubes to Gavin’s chest port — a medical device implanted beneath his skin — and started the flow of medicine into his body.
Flashes of boredom and worry floated across Charlie’s face. Gavin seemed unfazed by the whole process. On days like this one, it was easy for him to tune out the world around him.
In any given year, more than 4,000 American children will be diagnosed with leukemia.
Most survive. Many don’t.
Parents reach out to one another for support.
Charlie made a friend through social media in Kristi Messenger, whose son, Michael Alcayaga, also was battling leukemia. Michael was older, a handsome boy and student-athlete at Cascade High School in Everett.
When the mothers and sons finally met at a clinic in Seattle, Gavin seemed anxious about his upcoming appointment and bothered by his chest port that’s used to draw blood and inject medicines.
Michael wanted Gavin to know that he wasn’t alone.
He bent down and showed him that he, too, had the same bump beneath his skin.
Michael would see babies and toddlers in the cancer clinics. At least they won’t remember, he’d tell his mom.
Michael died in May 2014, nine months after his diagnosis. He was 16.
As Charlie prepared to go to the memorial, Koen found the invitation. He wondered, Could Gavin die, too?
In many ways, Koen has become his brother’s keeper.
The two share a bedroom. Koen sits next to Gavin on the bus ride home from school.
He protects him when his friends begin rough-housing anywhere near his brother.
And he was first in line to have his head shaved when Gavin’s hair was falling out. Koen wanted to show his brother that it didn’t hurt, that everything would be okay.
During the worst days of treatment, Koen and Lucy went away for a week to stay with their grandparents.
Gavin counted the days for Koen’s return.
“Five sleeps,” he told his mother.
That night, when she went to check on him, Gavin was curled up, fast asleep in Koen’s bed.
In November 2013, after seven months away, Gavin returned to his preschool classroom for autistic children in the Monroe School District.
He did well enough to be enrolled in a basic education kindergarten class this fall. The school provides him speech and occupational therapy. He still has socially awkward moments and can become overwhelmed at times, but he knows he can take refuge in a bean bag chair or the nurse’s office if it all becomes too much.
On his first day of school in September, Gavin put on his Super Mario backpack by 8 a.m., four hours early. At the bus stop, he hopped eagerly on one foot.
His medical journey is far from over. The dragon could come back. Every time Gavin gets a sniffle, cough or cramp, his parents worry.
For now, his blood counts are promising. He continues on his medicines at home but his chemotherapy at the hospital is down to once every 12 weeks. October marked the midway point of his treatment.
Recent months have seen milestones his parents wondered if they would ever see. Gavin made his first friend, was invited to his first birthday party and, on the day after Christmas, lost his first tooth.
Ken and Charlie Mayes look back at the help they have received from family, friends and strangers.
Gavin has needed 16 blood transfusions since he was diagnosed. They know he is alive today through others’ gifts of blood.
The Mayes have hosted four blood drives for the Puget Sound Blood Center at their church, more than replenishing what was given to Gavin. They know the need is great for donations.
“It’s not pulling a child out of a burning building, but the end result is the same to a lot of families,” Ken said.
Down at the Man Cave, a barber shop off U.S. 2 where several of Gavin’s supporters had their heads shaved in symbolic support, Jan Woolery kept a donation jar on his behalf and raised more than $100. When Gavin’s hair finally grew back, his mom teared up and kept a curl. At the Man Cave, Gavin gets free haircuts for life.
It is hard to imagine that Gavin is the same boy who barely spoke two years ago. As he sits on the couch reading books aloud and solving math problems on an iPad, he looks up at his visitor to make eye contact.
Although he likes to say he wants to kick cancer in the butt and will lower his shirt collar to show his chest port, he doesn’t like to talk about what he has been through.
He brings his magnetic trains, including Thomas the Tank Engine, to the kitchen table. He is no longer the boy who’d turned to the wall, silently fixated on lining up his Hot Wheels. He and Lucy engage in imaginary play with train crashes and creative sound effects.
The make-believe conversation drifts.
At one point, Gavin announces: “I’m the Daddy. I’m the boss.”
As noon approaches one day in early February, Gavin slips on his rubber boots and his backpack and walks two blocks to the bus stop with his mom and Lucy.
Once buckled in, he returns their waves.
“He is blossoming,” Charlie says.
Just inside the front door of the Mayes house, there is a set of ladder shelves. On a top tier is a hard-bound tome of Jane Austen works. Nearby is a sign that reads: “Keep calm. Seriously? In this house?”
Charlie is eight months pregnant.
Next month, if the doctor’s ETA is accurate, there will be a new voice in the home on the hill.
And the coffee will still grow cold.
Genna Martin contributed to this story.
Eric Stevick: 425-339-3446, stevick@heraldnet.com
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