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‘Defined by God,  not by cancer’

Ben Erickshis sMatthew 10 months grab each others noses pass time waiting recovery with Erickson's wife Sue October 31 2012

Ben Erickson and his son Matthew, 10 months, grab each others noses to pass time waiting in recovery with Erickson's wife Sue October 31, 2012 at Lurie Children's Hospital of Chicago. The Huntley family have spent a lot of time in hospitals due to Matthew's rare brain cancer that he was born with. October 31, 2012 | Michael Smart~Sun-Times Media

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In Part I: Ben and Sue Erickson of South Elgin were shaken up when an ultrasound showed their third child would be born with an irregularity of the brain. They set up a network of friends, family and Facebook followers to pray for his health that eventually would number 3,000 and be known as “Team Matthew.”

When Matthew Donald Erickson was born on Dec. 11, 2011, he seemed healthy. But four days later, doctors discovered the infant had a form of brain cancer so rare only about five babies are born with it each year. Given a choice of letting nature take its course or fighting to save him, the Ericksons chose the latter. There followed a year of surgeries and chemotherapy, during which Sue Erickson lived at what is now Lurie Children’s Hospital in Chicago and the associated Ronald McDonald House more than she did at home.

The final chemo stopped in August and the family of five was able to live a basically normal existence back in Huntley for the first time. But on Halloween Day it was time to go back to the hospital and search Baby Matthew’s head with an MRI to see whether, freed from the chemo, the cancer had started growing again. Six hours after they arrived at Lurie, pediatric cancer specialist Dr. Rishi Lulla carried Matthew, dressed in a Halloween costume as a lion, into his office and called up the MRI pictures as Ben, Sue and six friends and family members gathered around.

As they crowd around the doctor’s computer screen, Dr. Lulla calls up the MRI pictures, studies them and starts pointing out that troubling crescent-shaped smudge that had remained after the chemo ended two months before.

“This main area of concern actually looks a little less to me,” he says. “It has not grown. I would call this stable to mildly improved.”

“I’m really very happy,” Lulla says. “I don’t want to be overly optimistic. But this means we don’t have to do any (chemo) for the next several months.”

Holding the baby on his lap, Lulla claps Matthew’s hands together and says, “Yay.” Tears stream down Sue’s face.

Thanking God

Two weeks before Thanksgiving, Sue and Ben Erickson return to Judson University, where they had fallen in love 11 years before, to lead a chapel service talking about Baby Matthew’s life. After the congregation sings a song that asks, “What if your blessings came as raindrops? What if your healing comes through tears?” they sound a note of praise to God.

As students and faculty members enter the chapel, Sue is reminded of a day in July when Matthew was due to start a new round of chemo — a round he desperately needed to keep beating that cancer back — but a measure of his white blood cells was too low to safely begin the treatment.

As Sue had done so often before in this journey, she fell to her knees in prayer.

“His white count had been 660. I prayed that Matthew’s count would be 750, the minimum to start chemo today. But as I was praying, I thought to myself, ‘God, not being greedy or anything, but I know you can make them even higher so it is safer for chemo. I pray his count is 1,000 and if anyone can do it, God, it’s you,’” she recalled.

“When we got his lab result the next morning, God reminded me that he can do more than I even pray for and that even when I think I am putting my faith in him, I still sell him short.

“Matthew’s white count on Wednesday had been 660.

“We needed 750 to start chemo.

“I prayed for 1,000.

“God answered me that morning with a count of 2,200!”

‘Matthew is not cancer’

“Matthew is not cancer,” Sue tells the students and professors at Judson. “When they look at Matthew, I do not want people to think of cancer. I want people to think of life. I want people to think of hope.”

Why has Matthew done so much better than expected?

“We have 2,400 Facebook followers in eight countries,” (a number that since then has gone on go swell to 3,000), Sue tells the congregation. “That’s 2,400 people who have prayed for Matthew every single day, who have been going to their small (Bible study) groups and praying with them, who have suffered with us through our tough days and celebrated with us through our fine days.”

And has any good come from all this?

“People have written to us from all over the country who said they had turned their back on God but through Matthew’s experience, they have come back to the Lord,” she says.

Sue reads from two passages in the New Testament they named their son after. In Matthew 21:21, Jesus tells his disciples, “if you have faith and do not doubt ... you can say to this mountain, ‘Go throw yourself into the sea’ and it will be done. If you believe, you will receive whatever you ask for in prayer.”

In Matthew 8, a furious storm on the Sea of Galilee threatens the boat occupied by Jesus and his disciples until Jesus wakes up. “You of little faith, why are you so afraid?” Jesus scolds the disciples. Then Jesus “rebuked the wind and the waves, and it was completely calm,” the Bible says.

Sue says to the crowd, “I’m thankful for the mountain God put before us and thankful for the biggest storm in our lives. I don’t know if Matthew is going to make it or not. But if one person comes to meet God because of what happened to us, it will be worth the journey.”

Super Matthew

Three weeks later, on Dec. 9, more than 100 people gather in a meeting room on the Judson campus to celebrate a first birthday that few thought Baby Matthew would ever see. The theme is “super heroes,” and many wear the third generation of Baby Matthew T-shirts — showing a small child with a Superman logo on his chest flexing his muscles, with the slogan “Team Matthew.”

Magician Ken Mate does tricks. A Santa Claus listens to requests. Young men dressed as Superman, Spider-Man and Captain America stroll the crowd, causing Baby Matthew suddenly to reel back in terror at their scary-looking visages.

Those attending include Julie Vanderpool, mother of Matthew’s first little roommate at Children’s Memorial, and fellow Huntley resident Joe Kettner, who founded a charity called Cancer, Kiss My Cooley after his own son died of a brain tumor at age 6. It was Cancer, Kiss My Cooley that paid for most of the birthday party’s expenses.

“This is the day we have prayed for,” Sue tells the crowd before cutting into a giant birthday cake. “We couldn’t have done it without God and without you guys.”

She doesn’t ask

To the naked eye today, Matthew seems and acts pretty normal. Only the bulge of that drainage tube across one side of his head remains to obviously mark those surgeries. He does little with his left side, which has been weakened by cutting out so much of the side of the brain that controls it. And while others his age are learning to walk, a therapist is only now teaching him to crawl.

He still smiles, always. He laughs. He calls his parents by their names — “DaDa” and “MaMa” and is learning other new words. With a PICC intravenous line finally removed from his arm, he can take baths for the first time in his life. With chemo over, he can finally grow hair.

A Facebook posting by Sue last weekend provides a glimpse into their family’s current mindset:

“We had to go in for a lab so we decided to go to Lurie’s so we could visit our floor, our nurses and Ronald McDonald House,” Sue wrote. “We saw a couple of our favorite nurses and Matthew couldn’t stop kissing them. We also saw someone from the Family Life Center that we had not seen since July. She was floored by Matthew — so much so that she was in tears.

“I love that the staff at the hospital has become family to us and that we can’t just go to the hospital. Each visit is a few hours because we stopped by so many of them who love us as much as we have come to love them. We also saw a couple of families on our floor who we have not seen since we left the hospital back in August. They have never seen Matthew with hair, so they fell in love when they saw him. We also visited Ronald McDonald House and spent most of the day there.

“Not only is RMH a place that helped us to hold our family together through the hardest time we have ever faced, but the girls there love my kids, played with them every day, hugged them every day and were family to us. Needless to say, Matthew handed out a TON of kisses and snuggled with all of his ladies at the hospital and RMH.

“We are so blessed by so many people who have loved us, supported us and prayed for us. Every time I visit the hospital and RMH, I am humbled by what God has done for us and who God has placed in our lives.

“What did we do to deserve so much? I don’t know, but again, I am humbled beyond belief.”

Facing the future

The next MRI is scheduled for Feb. 11. That will be time for more “scanxiety” for Ben and Sue.

The odds that Matthew’s remission will continue?

“That is a question Ben and I have never actually asked the doctors,” Sue says. “We don’t care. God doesn’t sit up there and say that only 5 percent of this group of kids are going to live for a year and when the 5 percent are used up, Matthew dies. God is not that kind of a God.”

Still, she and Ben know deep-down that in human terms, this is probably not a curable disease. In fact, this particular form of cancer is so rare, even specialists like Lulla might not be able to assign numbers to Baby Matthew’s long-term prognosis.

But then Ben and Sue and their God never have been fighting this battle on human terms.

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