Born with a rare and aggressive brain tumor, Huntley teen starts high school — a once-unfathomable milestone

At the first glimpse of his newly printed high school ID card, freshman Matthew Erickson jumped up and down with excitement, waving the little piece of plastic triumphantly in the air.

“Wow! I got it,” he shouted in the halls of Huntley High School earlier this month during a materials pickup event prior to the first day of class. “I love it.”

The start of high school seemed an improbable milestone for Matthew almost 15 years ago, when he was born with an extremely rare and often fatal form of brain cancer.

A prenatal ultrasound just a few weeks before his birth had revealed the first sign of trouble: An excess of cerebral fluid had built up on the unborn baby’s brain.

After delivery, the roughly 6-pound newborn seemed strong and healthy, scoring high on the standardized infant assessment done after birth. Yet when surgeons drained the fluid, they discovered a large malignant tumor called a high-grade glioma that had developed in the womb, engulfing most of the right hemisphere of his brain.

It’s typically diagnosed in adults — only about five births each year are afflicted by the condition nationwide. The cause of the tumor was unknown, according to medical experts.

His dad, Ben Erickson, had asked in disbelief if his new baby was dying — if Matthew was born dying.

Physicians explained that, except for the golf ball-size tumor, his son was healthy.

The Ericksons could have opted to take the baby home with hospice care, keeping him pain-free until an inevitable end.

Instead, they chose to battle the cancer.

“It was like: Let’s give him a chance here,” his dad recalled. “And that’s what we did.”

During his short life, Matthew has endured 16 brain surgeries — the first at just 4 days old — and six rounds of chemotherapy at Lurie Children’s Hospital in Chicago.

Dubbed the “miracle child” of Huntley, Matthew is savoring all of the typical back-to-school rites and rituals as he begins his pivotal freshman year.

On the first day of school on Aug. 19, he kept saying “wow” as he marveled at his new classroom, from his school laptop to the learning games on the back shelf to his desk with a green pencil case on top.

He repeated the name of his special education teacher “Mr. Spears,” trying to get it just right.

In a Cubs shirt and black Nike gym shoes, the teen hugged several friends from middle school, showing them how tall he had grown over the summer. His close-cropped haircut revealed a light 2-inch scar on the back of his head, a remnant of his many surgeries.

When asked if he was at all nervous, Matthew firmly replied, “No way.”

He was elated to find his new red locker, which was nearly identical to all the others lining the walls except for a white sticker with his name affixed to the door; it’s also secured with a special push-button lock — the same one he used in middle school — that’s easier for him to operate than the round combination locks on most of the lockers throughout the school.

When Matthew opened the door to put his black backpack away, he found a pink sticky note inside with a hand-drawn heart from his sister Sophia, who is an 11th-grader at the school of roughly 2,700 students.

“Can you believe I’m in ninth grade?” he recently asked his mother and father.

They shook their heads, still in awe of how far their son, the youngest of their three children, has come since his perilous first few days of life.

“The fact that we … got out of middle school and now are going to get to high school, it’s definitely not something that’s lost on us,” said his mom, Sue Erickson. “Not just on these milestones, but on any given day.”

The Tribune has chronicled Matthew’s against-all-odds perseverance since his infancy, marking many of his major childhood moments and benchmarks.

Today, there is no evidence of cancer in the boy’s roughly 5-foot-2-inch, 110-pound frame.

“This is a rare and aggressive tumor and … Matthew is in a rare group of patients who have survived,” said Dr. Rudy Allen, a neuro-oncologist at Lurie, during a July appointment. “We are thrilled that he is such a happy, energetic, joyous boy that we all smile when we see.”

The tumor was a formidable foe, the physician said.

“Matthew was tougher,” he added.

Yet his mother noted that her son still has to fight to survive and thrive every day.

While the treatments and surgeries have kept him alive, they’ve also “wreaked havoc” on his young body, she added.

Matthew faces arduous health struggles and numerous developmental challenges.

His vision and hearing are impaired, and he has limited use of the left side of his body, including his arm and leg, as well as his tongue and mouth in that direction.

His gait is a bit stilted, and he sometimes needs help walking; his left leg is a little shorter than his right and often has tremors.

Matthew undergoes periodic brain scans, which are a nerve-wracking time for his parents. There’s always a possibility the cancer might return, though this becomes much less likely the more time passes. In mid-August, the Ericksons celebrated 14 years of Matthew living with no trace of cancer, a positive sign and huge comfort to his family.

“But in the back of our minds there’s still that lingering fear, knowing that it could change at any time,” Sue Erickson said.

Frequent migraines keep him out of school roughly half the academic year; the Ericksons are uncertain of their exact cause, but they’re meeting with a pain specialist later this year in hopes of improving school attendance as well as his overall quality of life.

In some ways, Matthew’s parents liken him to a toddler or kindergartener developmentally: He wears diapers, his speech is sometimes slurred, and he can have difficulty recognizing dangerous situations on his own.

At the same time, his mom and dad are sometimes struck by his unexpected level of cognition or a sudden ability to navigate the world physically. Using a new phrase. Reading tougher words with ease. Stepping over an object with his left leg when he previously would have stumbled.

High school could be a time of great growth.

“He’ll probably surprise us along the way,” Ben Erickson said.

Appreciating every moment

During Matthew’s eighth grade promotion ceremony in May, he led the line of students processing into the Huntley High School gym to “Pomp and Circumstance,” pausing occasionally to grin and wave at his parents.

Matthew’s name was the first to be called out. He walked up to the stage via a ramp with a little help from an aide but mostly on his own.

Facing the audience, he paused to pump his right fist in the air and jubilantly hold up his certificate marking the culmination of middle school.

The entire gymnasium roared with claps and cheers, the loudest and most fervent applause of the evening.

His mom broke down and cried.

“It was overwhelming for me. He goes to school day in and day out. But we don’t really get a glimpse into how he is or how his peers are with him and how they communicate with each other,” Sue Erickson said. “As a special needs parent, you just don’t know how he’s accepted or if people are making fun of him.”

If someone was being cruel to Matthew, he might not understand or be able to tell anyone, she said.

“Teachers and aides can say everyone loves him. You hope that that’s true. You don’t really know,” the mom added. “But to see everyone get so pumped for him and embrace him in that moment, for me, I was bawling my eyes out.”

The parents say they don’t take any of their time with Matthew for granted.

“We see Matthew do something that blows us away, something we never expected. We get to experience this literally every single day,” Sue Erickson said. “And it could be something incredibly small, like he used his left hand to do something he’s never been able to use it for before. … Those little things, we get to experience those things, those joys.”

They have many friends whose children had cancer but weren’t as fortunate as Matthew.

“There’s never a day that goes by that we don’t appreciate those moments that we get,” Sue Erickson added. “Because so many of our friends didn’t get those moments.”

Different perspective

Matthew is typically a high-energy, effervescent and extroverted kid.

But on the first day of freshman year, he was on a whole other level of exhilaration, repeatedly high-fiving every staff member and student he encountered multiple times before the start of his first class.

“I can’t believe it’s ninth grade. High school,” he told everyone, shaking his head.

His schedule includes core classes like social studies, language arts and science. He says his favorite subject is math.

He’s also taking a course in job skills as well as adaptive physical education — his first class of the day — which is modified in various ways for students with special needs.

“I love gym,” he said at the start of his physical education class, before walking in a large circle with about a dozen of his fellow students in the gymnasium to warm up. “I am so happy for this.”

His physical education teacher, Cindy Fitzgerald, who has taught him since kindergarten, said Matthew is “sunshine,” bringing positive energy wherever he goes.

“He wants to meet everybody,” she added. “He wants to include everybody.”

The district’s special education programs are designed to ensure students have access to the least restrictive school environment possible, said Dede Gill, assistant superintendent of special services for Huntley Community School District 158.

“We have spent a lot of time focused on meaningful inclusion for our students with disabilities — making sure they have access to rigorous instruction and rigorous programs and making sure their teachers have what they need to provide really rigorous instruction,” she said. “But also keeping in mind that our students have really unique needs.”

Sue and Ben Erickson said they’ve always been happy with Matthew’s individualized education program, the legal document that guides the special education plan for students with disabilities, as well as the services he’s received through the district.

They are less concerned with his grades and more interested in him learning things like transferable life skills, collaboration with other students on problem solving and getting more practice in social situations.

They know he flourishes emotionally when he’s around large groups of kids. During passing periods between classes, he’s known to give out hundreds of high-fives to friends and strangers alike.

“He really thrives on that. He likes making other people smile and laugh,” Sue Erickson said. “He gets energy from other people.”

Her biggest hope for Matthew’s next four years is that his presence at school spurs a greater understanding and compassion for folks with special needs among the general student population.

“I want him to make friends and just be happy. And hopefully change other people’s perspectives,” his mom said. “I hope that him loving on those people — and hopefully them loving on him back — will open up their hearts to see not just Mathew but the other special ed kids in school and life differently. And see them through a different lens.”

eleventis@chicagotribune.com