‘Defined by God, not by cancer’
January 20, 2013 12:03AM
Matthew Erickson, 10-months, is held by his mother Sue in the recovery room following an MRI at Lurie Children's Hospital of Chicago October 21, 2012. October 31, 2012 | Michael Smart~Sun-Times Media
Updated: February 21, 2013 6:20AM
The short life of Matthew Donald Erickson has offered lots of surprises for his mom and dad over the past year.
Like finding out he would be born with “water on the brain” and could have major handicaps.
Like finding out that what he actually had was something even worse.
Like being ambushed at the crack of dawn by hundreds of South Elgin High School students with well-wishes and gifts.
Like piling up a million dollars in debt.
Like being interviewed on a Chicago TV station.
Like getting Facebook friends from places like Finland and Australia before he was old enough to say either “face” or “book.”
Like becoming a source of inspiration to others and praise to God.
And like living to see his first birthday.
The dreaded call
Ben Erickson, who teaches film and coaches the baseball team at South Elgin High, and his wife Sue, who did paperwork for a private detective agency, had lived a pretty blessed life until the fall of 2011.
Both devoted Christians, they had met while attending Bible-based Judson University in Elgin. Their first two kids, Nolan (now 5) and Sophia (now 2) were happy and healthy. But they decided to fill their Huntley townhouse with a third child whom they would name Matthew.
Ben and Sue looked back at their past ordeal on Halloween morning last fall as they sat in a cafeteria at Lurie Children’s Hospital in Chicago. Sophia, dressed like a red ladybug for the holiday, sat in a stroller while an entourage of friends and extended family members stood by.
They had all come here before dawn so that Baby Matthew could get an MRI test. After three months without chemotherapy, that test would find out whether the cancer had returned.
Their carefree life had all changed about a year before, Ben recalled, when they got the kind of phone call every parent dreads. Sue was eight months pregnant and the obstetrician had done an ultrasound. At first the doctor assured them everything looked fine.
“I headed back to school,” Ben recalls. “Then the nurse called and said, ‘We think we saw something unusual on the brain.’”
More testing followed. Doctors figured out the unborn baby had some kind of a 2-inch-wide fluid-filled gap filling much of one side of his brain. They thought he might have suffered a stroke. Or maybe it could be hydrocephalus, “water on the brain.”
Either way, they warned, this third child could be born partly or totally paralyzed, or with mental defects. The Ericksons, along with family and friends, began to pray the baby could be healthy.
When Matthew was born at Sherman Hospital on Dec. 11, 2011, he seemed healthy. Weighing in at 6 pounds, 3 ounces, he breathed like normal. He wriggled his arms and legs like normal. He grimaced like normal.
When the baby was four days old, doctors operated on that odd gap in the brain, sucked out the fluid and sent a sample of the tissue to figure what it was. Ben and Sue felt their hearts sink when the surgeon invited them into a conference room to talk about what he had found.
What was so worrisome was that the doctor brought along a social worker and asked Ben and Sue if they would like the hospital chaplain to be summoned, too. “We could see that this was not going to be good news,” Ben said.
It’s not water on the brain or a stroke. That mysterious spot is a rare, aggressive form of brain cancer called a glioma, that for reasons unknown developed even before the baby was born. It is so rare in children, he said, only five babies are born with it in the United States in a year. The situation was not easily treatable.
They asked whether Ben and Sue wanted to fight this with surgeries and chemotherapy, knowing that would be painful and long and exhausting and expensive and likely unsuccessful. The limited data about such cases suggested giving chemo to children under age 3 with high-grade gliomas — most of whom were not born with the tumor already growing — offered just a 40 to 50 percent chance of living three more years.
Or did they want to just take steps to fight off any pain, connect with a hospice and let nature take its course?
“One of the first things Ben said was ‘Is he dying? Was he born dying?’” Sue recalls. “The doctor said, ‘No. He’s completely healthy other than what’s going on in his brain.’”
“They gave us a few minutes to think about it,” Sue says. “But we didn’t have to think about it.”
Quoting verses from the New Testament in which Jesus calms a stormy sea and says faith can literally move a mountain, Sue said, “I knew that God was bigger than the mountain and more powerful than the storm. If there was any chance at all, we had to give it to him.
“The second thing I knew was that Matthew was not going to be defined by cancer. I wasn’t going to give that to Satan.”
And so began nine months of operations, of chemotherapies, of seizures and fevers, of good-news highs and scary-news lows, of Ben and the kids constantly traveling into a hospital in Chicago, and of Sue spending more nights in a Ronald McDonald House than she did in Huntley.
Even before the cancer was diagnosed, when that grim unknown hung over Unborn Matthew, the Ericksons’ friends, family and fellow church members had pitched in to pray for him. But with the diagnosis, a giant web of supporters began to assemble. Sue set up a Facebook page under “Matthew Donald Erickson” to chronicle what happened to them. Originally it was aimed only at friends and family. A year later, it would have close to 3,000 “friends,” from all over the United States and from countries like Australia, Finland, Japan and England.
But the depth of that support came home to Ben in late January 2012. The principal had asked Ben to come to work at South Elgin High early that morning to talk about use of the film students’ equipment. The principal suggested they move out of her office. Emerging into the school’s lobby, Ben suddenly was confronted with some 300 students wearing grey shirts reading “Grey Matters — Brain Cancer Awareness.” Also present were Sue and the family.
The students said they had been raising money to help with the medical bills by selling hundreds of those T-shirts, and they presented the parents with a giant check for $5,000.
That first T-shirt sale would be followed by shirts that read “Team Matthew — Defined by God, Not By Cancer,” a slogan that Sue uses repeatedly on the Facebook page.
Other fundraisers followed, often involving Elgin- and Huntley-area restaurants. When scores showed up for one at the Colonial Cafe in Elgin, it raised more money than any previous Colonial fundraiser.
Ben says they haven’t even added up how much they owe. “I’m sure it’s over a million dollars,” he says. “The first bill was 69 pages long. Insurance covers a lot, but a lot comes out of pocket, too. I don’t really know. I’m not sure I want to know.”
At least those fees don’t include babysitting bills. Ben says that in a case of God taking an unhappy turn and making it a happy one, Sue’s parents, Louise and Bob Turner, recently had lost their jobs and had moved in with the Ericksons in their Huntley townhouse. Louise was available to “take the night shift” at Matthew’s side in the hospital and take the day shift watching little Sophia. That allowed Ben to continue working at South Elgin High, taking Nolan to school and spending nights with Sue and both older kids in Chicago, usually sleeping at the Ronald McDonald House.
When Children’s Memorial moved last summer to a 23-story building called Lurie Children’s Hospital near the Chicago lakefront, a spiffy new Ronald McDonald House was built nearby. The Ericksons were featured on a Chicago TV news story as frequent users of both facilities.
“We’re pretty lucky to live just 35 miles away from a five-star children’s hospital,” Ben says. “Some people we have met at Ronald McDonald House have to drive hundreds of miles and end up essentially living there.”
The young lion
In Lurie Children’s Hospital on Halloween Day, a sedated Matthew has been taken to get his MRI and brought back to a recovery room. Ben and Sue sit by him in his little curtained-off space. As they wait for him to wake up, Sue dresses him up in his Halloween costume — as a little brown lion.
They recall the medical ordeals.
On Valentine’s Day, at age two months, Matthew had undergone brain surgery. Doctors cut the tiny skull open and removed most of that golfball-size tumor. But they couldn’t get all of it without doing too much damage to the brain.
Another surgery installed a tubelike shunt, to drain liquid from the space left in the brain and dump it into the baby’s stomach. Showing some faith in his potential to live a long life, the surgeons installed an extra length of tubing so it can continue to work as Matthew’s body grows.
But the main battlefront now would be a chemical one. In April Matthew began five rounds of ingesting poisons to kill off those remaining bits of tumor. But the intravenous injections also did a number on his own body. With his balance of sodium and water and hormones thrown off, partly by the chemo and partly by diabetes he sustained as a side effect of the treatments, Matthew repeatedly suffered terrifying seizures. His hair fell out.
“There were times when you could tell he was very uncomfortable,” Ben recalls. But this baby who had never really known a single day of healthy life “would always smile,” Ben says. “That seems to be his trademark. He’s always happy.”
At last, in August, an MRI showed nothing remained in that once-fluid-filled brain gap except a thin white-ish line of what could be scar tissue, could be a blood clot or could be lingering cancer cells. Pediatric cancer specialist Dr. Rishu Lulla told the Ericksons they could take three months off from chemo, take their baby home and live something like a normal life. Except for a couple days here and a couple days there, it would be the first time in eight months that the family would be able to live together at home.
Now, on Halloween Day, everything will depend on what this new MRI test has discovered. Out from under the hammer of chemotherapy, would the cancer have grown back? As the clock heads toward noon — their sixth hour at the hospital — everything is put on hold as the nurses can’t find the results of a sodium-level test.
Finally someone on the other end of a phone gives the Ericksons permission to take their young lion out of the recovery room. Ben and one of his former media students, Vince Blando, go out to the parked car where they have stowed dozens of Halloween gift baskets donated by personal and Facebook friends.
Ben and Blando ride an elevator up to the 18th-floor atrium of Lurie’s Center for Cancer and Blood Disorders and begin passing out the goodies to 30 or so kids — ages 1 to 12 — eating pizza at a Halloween party there. While most do not look particularly sick, almost all have bald post-chemo heads.
“The MRI that is scheduled for the 31st is haunting me,” Sue had written on the Facebook page a few days before. “I find myself staring at Matthew’s head, rubbing it, wondering what is going on in there, praying that the tumor is not changing at all.
“I have loved every second that we have had at home in the last two months and I dread having to start chemo again... (But) I cannot let fear hold me hostage. I have to let it go and trust that God has this.”
“Waiting for the scan results is the worst,” Sue says today as they pass out the gift baskets. “I call it ‘scanxiety.’”
At 12:25 p.m. Dr. Lulla, the cancer specialist, joins the party. He holds Baby Matthew in his arms and invites the entourage of some eight people into his little office.
The moment of truth is at hand.
Next Sunday’s Storyteller: Baby Matthew’s journey continues.