Child ‘defined by God, not by cancer’ celebrates a 2nd birthday he was never expected to have
By Dave Gathman firstname.lastname@example.org December 8, 2013 3:06PM
Sue Erickson holds her son Matthew at his second birthday party at Elgin Community College on Saturday, December 7, 2013. | Jon Cunningham/For Sun-Times Media
Updated: January 10, 2014 6:10AM
ELGIN — The list of surprises, both unpleasantly shocking and pleasantly filled with grace, that smiley “Baby Matthew” Erickson has delivered to his parents will grow by one on Wednesday.
A month before his birth on Dec. 11, 2011, parents Ben and Sue Erickson had discovered through an ultrasound that their third child likely would be born with water on the brain — and probably be disabled. Four days after his birth, they learned that it was not actually water on the brain. It was a rare and almost always deadly type of brain tumor.
Given the choice of putting the baby into hospice care and letting nature take its course or attacking the cancer with surgery and chemotherapy, Ben and Sue didn’t hesitate to take the latter path.
The bad surprises in the following year would include months at a time spending nights in a Ronald McDonald House while Matthew was cooped up in Lurie Children’s Hospital in downtown Chicago. Enduring six operations and five rounds of chemo. Piling up over a million dollars in medical bills.
But on the positive side came hundreds of new friends and supporters, 3,400 of whom now are following the family by a Facebook page called “Matthew Donald Erickson.” Some came from the other side of the world and some from the celebrity world. Thousands and thousands of prayers were offered on his behalf. A faith in God and Jesus that Ben and Sue had seen in each other when they met at Bible-based Judson University in Elgin years before grew not shallower but deeper.
On Oct. 31, 2012, an MRI revealed that even after three months without any chemotherapy, the inoperable remaining part of Baby Matthew’s tumor had stabilized into a thin slice of ungrowing tissue.
And on Saturday, 100 friends, relatives and gathered with them in a Chicago Cubs-themed party in the gym at Elgin Community College as the Ericksons celebrated the second birthday for their smiley child whom they thought would never come.
‘Defined by God’
During an emotional chapel service last fall at Judson, Sue Erickson declared that when she received the cancer diagnosis, she knew two things: “I knew that God was bigger than the mountain and more powerful than the storm. If there was any chance at all (to save Matthew’s life), we had to give it to him.”
And “the second thing I knew was that Matthew was not going to be defined by cancer,” she said. “I wasn’t going to give that to Satan.”
Ben is a media teacher and baseball coach at South Elgin High School. Sue did clerical work until caring for a sick child became a more-than-full-time job. They live in Huntley and have two healthy older children, 6-year-old Nolan and 3-year-old Sophia.
Ben and Sue agreed to fight the cancer, called “high-grade glioma,” with a mixture of medical science and Christian faith. They found themselves surrounded by a community of other young parents whose children also had some life-changing disease. And soon Ben and Sue would be supported by hundreds and then thousands of friends, some from other countries, who had never seen “Baby Matthew” but were touched by his story on Facebook.
These new friends organized fundraisers. They sold T-shirts reading “:grey Matters” and “team Matthew: Defined by God, Not By Cancer.” Most importantly, according to Ben and Sue, they prayed for the baby’s health by the thousands. And on Saturday, they helped organize the birthday bash at ECC with a magician, a face painter and “bags” games.
Many of those attending wore blue Cubs jerseys with “Rizzo 44” on their backs, to mark how the Cubs first-baseman has taken baby Matthew under his wing.
“Anthony Rizzo is a cancer survivor himself, and he visits the (Lurie) Hospital all the time,” Sue said. “He invited Matthew and four other cancer kids to a cook-off he has each year, and he Tweeted a picture of himself wearing a Team Matthew shirt during his baseball camp. Matthew recognizes him, and when he sees Rizzo, his eyes just light up.”
Closer to home, the ECC boys basketball team also adopted Matthew this year, literally becoming a “Team Matthew.”
“He sits on the bench with the players during their games, and they pick him up,” Sue said. To keep his un-sick siblings from feeling neglected, the ECC girls basketball team similarly adopted Sophia as their mascot, and the college’s baseball team adopted Nolan.
Last summer, the family was invited to throw out the first pitch at a Kane County Cougars baseball game.
No longer must the little fighter endure chemotherapy. But every four months, a doctor must look into his brain again with an MRI scan to check on the caged beast within. Each time, Sue and Ben and their family must endure what Sue calls “scan-xiety.” The most recent scan was scheduled for 8 a.m. last Wednesday.
An essay Sue posted a few days before on the Facebook page showed the fear that creeps up on her before every scan:
“I am trying not to let my fears and anxieties weigh on my heart,” she wrote.
“It’s hard. I watch Matthew thrive and accomplish so much each and every day, and I think to myself, ‘There is no way that the tumor can be growing.’ I hope that’s true, and I pray that that’s true — but at the same time, I know that the reality is that it COULD be growing. We are nearing nearly 16 months off of chemo — are you kidding me?! That’s even crazy for me when I type that number. I struggle with my thoughts and feelings each and every day. I have seen so many of our friends have bad MRIs and have to go back on chemo, and it scares me to death to think of entering that world and that life again.
“I almost feel like it would be harder emotionally to have to be in that place again than it was the first time. I dread these scans. I dread hearing the words, ‘Matthew’s tumor has grown.’ I dread the thought of having to tell Nolan and Sophia if that happens. I dread Matthew having to go through that again, especially now that he is older and more aware. The thought has me in tears right now and puts this heavy pit in my heart.
“That’s one side of my struggle. I sit here and have these thoughts, but then God is quick to remind me that THERE IS NOTHING TOO BIG FOR HIM. God has held us through so much to this point, why would I doubt that He isn’t carrying us now?
“I sit and think about the roughest of days — the time when Matthew coded and I walked into his hospital room to a room full of doctors and nurses working on him and the chaplain waiting to prepare me for the worst. I remember watching Matthew seizing for up to 34 minutes each time and the only thing I could do is hold his hand and tell him how much I loved him and how I would never let him go. The day when we walked into our neighbors’ room to visit with them and when we walked out she just started praying for Matthew because she didn’t think he was going to make it.
“But the good days have far outnumbered the bad. The number of times when I was feeling tired and wondering how I was going to do this and Matthew just gave me his Matthew smile and let me know that we were going to get through this.
“So then, why do I let this fear overtake me? Because it’s my reality. Cancer is my reality and my son still has cancer. My son still has a tumor that is sitting in his brain that can grow at any second. So please, be in prayer for Matthew’s scan and for peace of mind as we go through scan-xiety.”
But when the MRI was over Wednesday, the oncologist reported yet again that despite 16 long months without treatment, that remaining sliver of unremovable tumor has remained unchanged, or perhaps even shrunken a bit. So has a fluid-filled gap in his brain. Satan’s beast seems to be remaining at a standstill.
Other signs of progress have been more modest. Since the disease began, Ben and Sue had been letting both Matthew and older brother Nolan sleep in the parents’ bedroom. The night before that nerve-wracking MRI, Ben and Sue started letting them bed down in their own room.
Sue said that change was positive, but “I would be lying if I said I wasn’t sad. I would be lying if I said that I am not going to check on him a million times in the middle of the night even though I have a video monitor in his room.”
Baby Matthew lags behind the typical 2-year-old in what he can do. Because of brain damage from the many operations and the fluid buildup he was born with, he is able to say just a handful of words. “But he can understand what’s going on, and he calls his family Mama, DaDa, NoNo (Nolan) and Pia (Sophia).”
He also is just taking his first wobbly efforts to walk. “But when the orthopedist looked at him, he said, ‘That kid’s going to walk someday,’ ” Sue says.
And there’s one thing little Matthew has never had trouble doing — lighting up his face.
“His smile has melted my heart from the beginning,” Sue wrote on Facebook. “I haven’t met a person yet who has not been captured by the hope in his eyes and the smile that makes you smile in return. I just love this kid.”