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Born with rare brain cancer, boy beats odds to begin kindergarten

Tribune News Service • Sep 1, 2017 at 4:00 PM

By Angie Leventis Lourgos / Chicago Tribune (TNS)

HUNTLEY, Ill. — Matthew Erickson toddled across his new, brightly colored classroom Monday to greet a friend whom he hugged and called, “My buddy.”

It was the Huntley boy’s first day of kindergarten, and for all its typical rites of passage — a Superman backpack, a ride on a yellow school bus, joining classmates for story time — it was a day that seemed improbable 5 1/2 years ago, when Matthew was born with an extremely rare and usually fatal form of brain cancer.

“We see a miracle, not just in his life but through a new thing he learns every single day,” said his mother, Sue Erickson, 38.

The Chicago Tribune has been following Matthew’s progress since weeks after he was born with a condition so rare that doctors say it’s seen only in about five births nationwide each year: an aggressive form of brain cancer that developed while he was still in his mother’s womb.

The cancer, a high-grade glioma, is more often seen in adults and is usually a death sentence. In his case, the tumor had engulfed much of his brain’s right hemisphere. Matthew’s parents were given the option of putting him in hospice and waiting for the end.

Instead, this month, relatives and friends celebrated the five-year anniversary of his last round of chemotherapy. There’s no evidence of cancer in his 52-pound body.

“We are incredibly lucky,” said his father, Ben Erickson, 39, a teacher at South Elgin High School, “because this just as well could have gone in a different direction.”

The direction hasn’t always been positive. There have been many setbacks, nine surgeries and many rounds of chemotherapy.

Just last week, Matthew had to be rushed to the hospital just before what was supposed to be his first day of kindergarten at Chesak Elementary School in Lake in the Hills.

As his classmates shared their inaugural school lunch and recess on the playground, Matthew and his family were waiting to learn if he’d need yet another round of emergency brain surgery, a fairly common though anxiety-ridden reality of his recovery.

His health is still precarious, and little things like a twitch of his hand or a headache can ignite panic, often foreshadowing a seizure or return to the operating room. He has some developmental delays and receives special education services, and no one knows which skills might shift or fade with each operation. No matter how many milestones Matthew reaches, there is always the fear his cancer could return.

But all appeared to be well this last trip to the hospital, so surgery was averted and he was sent home, carefully monitored over the weekend by his tense but grateful parents. Though he started a few days late, Matthew seemed socially at ease in his multigrade classroom on Monday, raising his hand to answer questions and giving his new friends high-fives throughout the day.

“Snack time!” he said during a break at school, and with a little help grabbed a granola bar from his new cubbyhole.

Matthew’s diagnosis was once unfathomable to his parents. Yet Matthew’s perseverance — as well as the resilience of his growing mind — has proven equally enigmatic.

“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,” said Dr. Rishi Lulla, a pediatric neuro-oncologist at Lurie Children’s Hospital in Chicago who has treated Matthew. “And here we are, all these years later, going to kindergarten.”

INCONCEIVABLE

Sue Erickson recalled sobbing uncontrollably on the way to the hospital on Dec. 11, 2011.

“You should be excited,” she told herself, “you’re about to have a baby.”

Two weeks prior, an ultrasound had revealed an excess of fluid on the brain, indicating the baby could have mental or physical disabilities.

“I didn’t know if he was going to be born alive,” she said. “I was terrified.”

Even when the seemingly healthy 6-pound baby arrived, crying and waving his limbs, his mother was initially hesitant to hold him because she didn’t want to be too attached.

The inconceivable diagnosis came four days later: Matthew had an unusual form of brain cancer that had developed while he was in his mother’s womb; the cause, unknown.

“Is he dying?” Ben Erickson recalled asking, almost in disbelief. “Was he born dying?”

The answer was no, the baby was healthy other than the walnut-sized tumor. Specialists went over the options. One was to keep him comfortable and try to enjoy what time he had left.

The other was fighting the cancer with chemotherapy with a low chance of survival and real risk of long-term harm.

The Ericksons were told to take all the time they needed. The couple didn’t need more time.

“There is no other option for us,” Sue Erickson recalled saying. “We’re going to fight.”

But they were cautious. They didn’t set up Matthew’s nursery at home or put pictures on its walls.

“What if I put 6-month clothing in here and I come home without a baby?” Sue Erickson had thought at the time. “I couldn’t let myself go there. I was afraid I would have to sit in a room full of Matthew’s stuff. Without Matthew.”

Multiple rounds of chemotherapy ensued, along with thousands of blood draws and multiple brain surgeries. But the tiniest of cancer patients endured. Matthew reached his first birthday, then his second. At 4, he graduated to a survivors’ program for children with brain cancer at Lurie.

Sue Erickson is mainly a stay-at-home mom, but recently began doing some paid fundraising work for Lurie.

There are no guarantees, but as more time passes, it becomes less likely the tumor will return.

“I just can’t imagine going home on hospice and not having this,” Sue Erickson said. “His first step. A kiss every single day. The I love yous. I can’t imagine not having all of that.”

Now Matthew’s development is roughly on par with a typical 18-to-24-month-old, his parents say. He speaks in full sentences but with the slurred pronunciation of a toddler. Orange-and-blue-rimmed glasses help his impaired vision. Hearing aids allow him to pick up higher pitches and certain letters.

Matthew sometimes has seizures and most strike in the middle of the night. So he sleeps snuggled between his parents, his little fingers clutching his mother’s hand.

“When he has a seizure, his hand twitches,” Sue Erickson said. “So I hold his hand while I’m sleeping to see if I can feel him twitching.”

Braces help him walk. His gait is still a little stiff, he’s prone to falling and he needs help getting up; but his parents love to see him on the move.

They think of other families they’ve befriended over years of treatment, some whose children did not survive.

“We have a lot of friends who would give anything, anything for one more sleepless night with their kid,” Sue Erickson said. “We have tons of friends who would give anything to have their kid run around the house, ripping bills up or spilling a cup of water on the floor accidentally.”

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‘GOOD IN THE WORLD’

Sue and Ben Erickson never allow themselves to get excited about an upcoming milestone until they are in the moment, including the first day of kindergarten.

Matthew has a device called a shunt — two tubes in his head used to drain fluid from his brain to his stomach — which can malfunction and need fixing. If Matthew says his head hurts or he vomits, it can indicate problems with the shunt, sending him back for another operation.

While so-called shunt revisions are fairly common, they still involve brain surgery, and it’s uncertain how each operation might affect Matthew’s developing mind.

Matthew was set to start T-ball in June. Throngs of family and friends planned to cheer from the stands.

Then he needed three rounds of emergency surgery to revise the shunt, so his little glove and baseball cap will have to wait until next season. He emerged from those latest rounds of surgery pursing his lips and whistling for the first time, and no one knows how or why he learned to do that. But he also had trouble walking, seemingly losing some progress he’d made over the past year, until it became apparent new problems with his vision were to blame.

Vomiting and lethargy — signs of possible problems with the shunt — made him miss what should have been his first day of kindergarten last week, though surgery wasn’t necessary this time around.

So much of Matthew’s growing mind is still a mystery, including how much he can achieve.

His young brain is creating new and healthy cells that can make up for the parts that were removed to save his life. Every day brings a new word, skill or deeper understanding of the world, his parents say.

Like the time he learned to work a zipper, to the cheers of his brother Nolan, 10, and sister Sophia, 7. Or when he first figured out how to turn on the television to watch “Henry Danger.”

He recently told his first joke, properly mimicking the question-answer pattern and erupting in laughter at his own punchline: Knock-knock/Who’s there?/Peanut/Peanut who?/Peanut butter and jelly!

The opportunity for progress is particularly fascinating to his kindergarten teacher, Bonnie Smith.

“I always remind myself not to have a set expectation,” Smith said, “because every child is so unique.”

Last year, during half-day preschool, Matthew learned letters, colors and shapes, concepts his parents weren’t certain he’d be able to grasp.

This year will be his first full-day school experience, with music, and P.E. and art classes. He’ll have his own aide to help him walk, and eat lunch and navigate the hallways, as well as a team of physical, speech and occupational therapists.

Matthew’s endurance has touched people locally as well as across the country.

A Facebook page chronicling Matthew’s treatment includes photos of him with Chicago Cubs first-baseman Anthony Rizzo, himself a cancer survivor who has taken the little boy under his wing. Sue Erickson gave the keynote speech at the Anthony Rizzo Family Foundation Cook-Off for Cancer this year and in 2015.

“My son is 33 and fighting brain cancer the last 6 years!” one woman posted on the Facebook page in a comments section. “I show him pics of Matthew all the time and keep him updated on his journey and my Michael calls your Matthew HIS HERO!”

“I’ve watched you grow from afar,” another woman posted. “I’ve seen you not only challenge, but defeat all the obstacles that were placed in front of you. You have brightened so many days for more people than you will ever know.”

Lulla, the neuro-oncologist, believes Matthew is such an inspiration because he continues to beat all odds.

“As a doctor, it’s so humbling,” Lulla said, “because the truth is, you don’t know. 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.”

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