Matthew Erickson hugs and high-fives the numerous clinicians examining him at his 10-year checkup — a milestone that seemed unfathomable a decade ago, when he was born with a rare and usually fatal form of brain cancer.
The boy giggles as a nurse touches her stethoscope to his chest, listening to him breathe in and out during the recent examination at Lurie Children’s Hospital in Chicago. After removing his hearing aids, Matthew wriggles away when she tries to peer into his ears, tilting his face to reveal a light 2-inch scar on the back of his head, a vestige of multiple brain surgeries.
The northwest suburban Huntley boy cries a little as the phlebotomist collects samples of his blood, one of the thousands of blood draws he’s endured in his short life. Yet after the needle is removed, he grins and proudly shows off the cartoon Tweety bird bandage at the injection site.
“I’m a pretty lucky guy,” he says repeatedly, even when answering routine questions about his favorite food (watermelon) and how school is going (he does his homework super fast).
About 10 years ago, Matthew’s parents faced an inconceivable diagnosis: Their roughly 6-pound baby was born with a particularly aggressive form of brain tumor, called a high-grade glioma, which is extremely rare in kids.
The roughly golf ball-sized tumor grew in the womb, engulfing much of the right hemisphere of his brain. Medical experts say only about five children are born with such an uncommon and often lethal condition nationally each year.
His father, Ben Erickson, recalled asking if his son was dying — if Matthew was born dying.
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His mother, Sue, had wondered, “Why him?”
They had the choice of taking their baby home with hospice care, keeping him comfortable until the eventual end.
Instead, they decided to fight the cancer. Matthew survived his first brain surgery at just a few days old, two more in his first months of life, and multiple rounds of chemotherapy before he turned 9 months old.
The 10-year-old boy has had 16 brain surgeries — 18 surgeries total — in the course of his life.
Today, there is no evidence of cancer in his 91-pound body.
There are still many medical concerns and developmental challenges for Matthew, who is part of a survivors’ program for children with brain cancer at Lurie. As he grows, he’s monitored by a team of specialists there.
He has impaired hearing and vision as well as hindered mobility and limited use of his left side. His speech and pronunciation can be hard to understand, particularly when he talks fast, so his mother often repeats his words like an interpreter.
There’s always been the fear of cancer returning.
Matthew undergoes periodic brain scans and, before each one, his mom experiences what she calls “scanxiety”: a looming dread that cancer might reappear.
But Matthew’s most recent scan in early February was stable, a relief to his parents.
“He’s a miracle child,” says Dr. Rudy Allen, attending physician and neuro-oncologist at Lurie, during the recent appointment. “The odds were not in our favor with that tumor. Regardless of when in life it’s diagnosed, it’s an aggressive tumor that is difficult to cure.”
The physician pauses to give Matthew another high-five, grimacing afterward as if the force hurt his fingers, making the young patient laugh.
“So the fact that he’s here and joking around with me and doing high-fives … he’s one of the people who inspires us to keep doing what we’re doing and moving forward,” Allen says. “He’s an amazing little guy, as is his family.”
‘Good in the world’
The Tribune has chronicled Matthew’s unlikely survival, from his perilous birth in 2011 to some of the defining moments of his childhood.
He spent much of the first year of his life at Lurie, treated by specialists who became like family.
His second birthday was marked with a Cubs-themed party in a gymnasium at Elgin Community College in 2013, where some 200 supporters who followed his story gathered to celebrate the toddler’s perseverance, against all odds.
Wearing a Superman backpack, he boarded a yellow school bus for his first day of kindergarten in 2017; he enjoyed snack time and played on the playground with his new buddies, navigating the classroom and hallways with the help of an aide.
“The beautiful thing about the human body and medicine and science is that there’s a lot we don’t know, including why Matthew’s tumor had such a wonderful response to chemo,” Dr. Rishi Lulla, a former pediatric neuro-oncologist at Lurie, had told the Tribune five years ago. “It’s very affirming to the human spirit, especially in times like these when the world seems sort of in chaos. … There’s good in the world.”
On Dec. 11, Matthew turned 10. But the joy of the landmark birthday was tempered a bit by the pandemic.
Matthew had to spend the day in quarantine. He and everyone in his household had tested positive for COVID-19 at some point in December, during the height of a recent surge in cases fueled by the highly infectious omicron variant of the virus.
The month was a wave of infections and recovery for him, his parents, his 11-year-old sister, Sophia, and 15-year-old brother, Nolan, as well as his grandparents who were visiting from out-of-town.
But the seven of them shared a chocolate cake and sang happy birthday at home. Friends and relatives dropped off presents for Matthew on their porch.
“I’m double digits now,” he repeats occasionally during his recent checkup.
His mother captured her emotions in a Facebook post on his birthday.
“He came into this world having to fight for his life, but what I didn’t realize is just how much life this kid ensues,” the message says. “His smile. His laugh. His hugs. His energy. His love. His warmth. It’s all contagious. He has the ability to make anyone smile. You can’t be in a bad mood when you’re around him. He’s never in a bad mood himself and is always smiling.”
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At his birth, Matthew’s parents decided they didn’t want him to ever be defined by cancer.
“We know better — we know that his life is not defined by WHAT he has, but rather WHO he (is),” the post continues. “I am so thankful for every day I have been given this kid.”
Cures, costs
The fourth grader loves the Three Stooges, Pee-wee Herman and cheering on his sister’s basketball and softball teams, as well as hogging the television remote at home.
His dislikes include vegetables like beans and broccoli (“blech”) and going to sleep (“Never!”)
He will dunk pretty much anything in ketchup, including bananas.
And Matthew always has a good joke.
“What do you call a scared pig?” he asks during the recent checkup. “A MILK SHAKE!”
“That’s a cow,” his mom responds, laughing, because the failed delivery kind of makes the bit even funnier.
She helps hoist him up onto the examining table.
“Maybe I’ll do a belly flop,” he says, as mom shakes her head “no” vigorously.
For much of the recent appointment, Matthew clutches a Cabbage Patch Kids doll he calls Baby Charlie, who wears his own small paper face mask just like everyone else in the room.
Occasionally the boy shows off his forearm, making a muscle and announcing, “I’m very strong.”
Clinicians watch as Matthew walks across the hallway, with the aid of braces on his legs. He can only see straight ahead and isn’t able to put his arms out to catch himself if he falls, so his parents or another helper have to be by his side for his safety.
“Obviously we’re pleased with how well Matthew has done,” Allen says. “But there’s a cost to our cures.”
Sue Erickson says Matthew recently began going through puberty early, a common occurrence for kids with brain tumors. A hormonal implant was put in his arm to delay these changes for a few years until he’s 13, a more typical age.
His parents were given the option of letting him go through puberty now and, had it continued, he would have likely had a small growth spurt but would never get much bigger than he is at this point. His mom and dad need to carry him many places, so it could have made caring for him easier.
“But I would never choose to do something or not do something based on what’s best for me,” his mom says. “We want him to go through it at the right age.”
Another concern is that his legs are uneven. Eventually he’ll have surgery on his left leg to elongate those muscles and another surgery on the right leg to stop the growth plates, his mom says.
“In the hopes that the left will eventually catch up to the right,” she says. “We don’t know if it’s going to work, but that’s our hope.”
Sue Erickson documents many of Matthew’s victories and hospitalizations on Facebook. Interwoven are posts requesting prayers for family friends, often other kids fighting cancer.
There are also messages commemorating the birthdays of children who didn’t survive.
“Happy heavenly 13th Birthday to our buddy Riley!” reads one post from earlier this month. “His laugh, his smile, his joy all lit up a room and made everyone feel better just being in his presence.”
“There’s survivor’s guilt for sure,” Sue Erickson says. “We’ve lost so many friends. I honestly cannot count how many. That’s just a huge reality for us.”
In August, Matthew will be 10 years out of cancer treatment.
His family plans to celebrate the anniversary with a fall trip to Disney World. Matthew says he can’t wait to ride the Slinky Dog Dash roller coaster at Hollywood Studios.
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“It’s so fast, like BAM,” he says, illustrating the ride’s trajectory and speed with his hand.
“We’re still 10 years into fighting for his life,” Sue Erickson says. “Our fight hasn’t stopped.”