HUNTLEY, Ill. — Matthew Erickson toddled across his new, brightly colored classroom Aug. 28 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 5½ 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, last 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.”
Health still precarious
The direction hasn’t always been positive. There have been many setbacks, nine surgeries and many rounds of chemotherapy.
Just last month, 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 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 Aug. 28, 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.”
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.”