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


Matthew Erickson toddled throughout his new, brightly coloured classroom Monday to greet a good friend whom he hugged and referred to as, “My buddy.”

It was the Huntley boy’s first day of kindergarten, and for all its typical rites of passage — a Superman backpack, a experience on a yellow faculty bus, becoming a member of classmates for story time — it was a day that appeared unbelievable 5 1/2 years in the past, when Matthew was born with a particularly rare and often deadly type of brain most cancers.

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

The Tribune has been following Matthew’s progress since weeks after he was born with a situation so rare that docs say it is seen solely in about 5 births nationwide annually: an aggressive type of brain most cancers that developed whereas he was nonetheless in his mom’s womb.

The most cancers, a high-grade glioma, is extra typically seen in adults and is often a dying sentence. In his case, the tumor had engulfed a lot of his brain’s proper hemisphere. Matthew’s mother and father got the choice of placing him in hospice and ready for the top.

Instead, this month, family members and buddies celebrated the five-year anniversary of his final spherical of chemotherapy. There’s no proof of most cancers in his 52-pound physique.

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

The course hasn’t all the time been constructive. There have been many setbacks, 9 surgical procedures and lots of rounds of chemotherapy.

Just final week, Matthew had to be rushed to the hospital simply earlier than what was supposed to be his first day of kindergarten at Chesak Elementary School in Lake within the Hills.

As his classmates shared their inaugural faculty lunch and recess on the playground, Matthew and his household have been ready to study if he’d want yet one more spherical of emergency brain surgical procedure, a reasonably widespread although anxiety-ridden actuality of his restoration.

His well being continues to be precarious, and little issues like a twitch of his hand or a headache can ignite panic, typically foreshadowing a seizure or return to the working room. He has some developmental delays and receives particular schooling providers, and nobody is aware of which expertise may shift or fade with every operation. No matter what number of milestones Matthew reaches, there’s all the time the worry his most cancers might return.

But all appeared to be nicely this final journey to the hospital, so surgical procedure was averted and he was despatched house, rigorously monitored over the weekend by his tense however grateful mother and father. Though he began a couple of days late, Matthew appeared socially comfy in his multigrade classroom on Monday, elevating his hand to reply questions and giving his new associates high-fives all through the day.

“Snack time!” he stated throughout a break at college, and with a bit assist grabbed a granola bar from his new cubbyhole.

Matthew’s analysis was as soon as unfathomable to his mother and father. Yet Matthew’s perseverance — in addition to the resilience of his rising thoughts — has confirmed 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,” stated Dr. Rishi Lulla, a pediatric neuro-oncologist at Lurie Children’s Hospital in Chicago who has handled Matthew. “And here we are, all these years later, going to kindergarten.”

Inconceivable

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

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

Two weeks prior, an ultrasound had revealed an extra of fluid on the brain, indicating the infant might have psychological or bodily disabilities.

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

Even when the seemingly wholesome 6-pound child arrived, crying and waving his limbs, his mom was initially hesitant to maintain him as a result of she did not need to be too hooked up.

The inconceivable analysis got here 4 days later: Matthew had an uncommon type of brain most cancers that had developed whereas he was in his mom’s womb; the trigger, unknown.

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

The reply was no, the child was wholesome aside from the walnut-sized tumor. Specialists went over the choices. One was to maintain him snug and check out to take pleasure in what time he had left.

The different was preventing the most cancers with chemotherapy with a low probability of survival and actual danger of long-term hurt.

The Ericksons have been informed to take on a regular basis they wanted. The couple did not want extra time.

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

But they have been cautious. They did not arrange Matthew’s nursery at residence or put footage on its partitions.

“What if I put 6-month clothing in here and I come home without a baby?” Sue Erickson had thought on 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, alongside with hundreds of blood attracts and a number of brain surgical procedures. But the tiniest of most cancers sufferers endured. Matthew reached his first birthday, then his second. At four, he graduated to a survivors’ program for youngsters with brain most cancers at Lurie.

Sue Erickson is especially a stay-at-home mother, however lately started performing some paid fundraising work for Lurie.

There are not any ensures, however as extra time passes, it turns into much less possible the tumor will return.

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

Now Matthew’s improvement is roughly on par with a typical 18-to-24-month-old, his mother and father say. He speaks in full sentences however with the slurred pronunciation of a toddler. Orange-and-blue-rimmed glasses assist his impaired imaginative and prescient. Hearing aids permit him to decide up greater pitches and sure letters.

Matthew typically has seizures and most strike in the midst of the night time. So he sleeps snuggled between his mother and father, his little fingers clutching his mom’s hand.

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

Braces assist him stroll. His gait continues to be a bit of stiff, he is susceptible to falling and he wants assist getting up; however his mother and father love to see him on the transfer.

They consider different households they’ve befriended over years of remedy, some whose youngsters didn’t survive.

“We have a lot of friends who would give anything, anything for one more sleepless night with their kid,” Sue Erickson stated. “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.”

‘Good on the earth’

Sue and Ben Erickson by no means permit themselves to get enthusiastic about an upcoming milestone till they’re within the second, together with the primary day of kindergarten.

Matthew has a tool referred to as a shunt — two tubes in his head used to drain fluid from his brain to his abdomen — which may malfunction and wish fixing. If Matthew says his head hurts or he vomits, it may well point out issues with the shunt, sending him again for an additional operation.

While so-called shunt revisions are pretty widespread, they nonetheless contain brain surgical procedure, and it is unsure how every operation may have an effect on Matthew’s creating thoughts.

Matthew was set to begin T-ball in June. Throngs of household and buddies deliberate to cheer from the stands.

Then he wanted three rounds of emergency surgical procedure to revise the shunt, so his little glove and baseball cap may have to wait till subsequent season. He emerged from these newest rounds of surgical procedure pursing his lips and whistling for the primary time, and nobody is aware of how or why he discovered to do this. But he additionally had hassle strolling, seemingly dropping some progress he’d remodeled the previous yr, till it turned obvious new issues with his imaginative and prescient have been to blame.

Vomiting and lethargy — indicators of attainable issues with the shunt — made him miss what ought to have been his first day of kindergarten final week, although surgical procedure wasn’t mandatory this time round.

So a lot of Matthew’s rising thoughts continues to be a thriller, together with how a lot he can obtain.

His younger brain is creating new and wholesome cells that may make up for the elements that have been eliminated to save his life. Every day brings a brand new phrase, talent or deeper understanding of the world, his mother and father say.

Like the time he discovered to work a zipper, to the cheers of his brother Nolan, 10, and sister Sophia, 7. Or when he first found out how to activate the tv to watch “Henry Danger.”

He lately advised his first joke, correctly mimicking the question-answer sample and erupting in laughter at his personal punchline: Knock-knock/Who’s there?/Peanut/Peanut who?/Peanut butter and jelly!

The alternative for progress is especially fascinating to his kindergarten instructor, Bonnie Smith.

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

Last yr, throughout half-day preschool, Matthew discovered letters, colours and shapes, ideas his mother and father weren’t sure he’d give you the option to grasp.

This yr will probably be his first full-day faculty expertise, with music, and P.E. and artwork courses. He’ll have his personal aide to assist him stroll, and eat lunch and navigate the hallways, in addition to a workforce of bodily, speech and occupational therapists.

Matthew’s endurance has touched individuals regionally in addition to throughout the nation.

A Facebook web page chronicling Matthew’s remedy consists of photographs of him with Chicago Cubs first-baseman Anthony Rizzo, himself a most cancers survivor who has taken the little boy beneath his wing. Sue Erickson gave the keynote speech on the Anthony Rizzo Family Foundation Cook-Off for Cancer this yr and in 2015.

“My son is 33 and fighting brain cancer the last 6 years!” one lady posted on the Facebook web page in a feedback part. “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,” one other lady 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 as a result of he continues to beat all odds.

“As a doctor, it’s so humbling,” Lulla stated, “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.”

eleventis@chicagotribune.com

Twitter: @angie_leventis



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