Sue and Ben Erickson thought they were prepared after learning that their baby could be born with physical or mental disabilities. An ultrasound during the 36th week of pregnancy revealed an excess of cerebral fluid on the unborn infant's
but the young Huntley couple quickly accepted that God must have a special plan.
They were overjoyed when Matthew Donald Erickson emerged from the womb on Dec. 11 in seemingly great form at just over 6 pounds.
He wriggled his arms and legs, grimaced and scored high on the newborn checklist to assess health.
But what came next was unfathomable.
, while removing fluid from the 4-day-old baby's brain, discovered a large mass. A biopsy confirmed devastating news.
, they said. The Ericksons were stricken with fear. How, they wondered, can a baby be born with cancer?
There was more.
The baby suffers from an especially aggressive form of brain tumor, a high-grade
, most often diagnosed in adults, the doctors said. The cancer, whose causes are unknown, had already engulfed most of the right hemisphere of Matthew's brain. Only about five children nationally are born with such a rare, usually fatal, condition each year, his doctors
"Why him?" said Sue Erickson, 33. Her eyes welled as she recalled her initial reaction. "It's just not fair."
The doctors said they would understand if the couple took their baby home with hospice care, loved him and waited for the inevitable.
But the team of specialists offered another option:
, a toxic potion used to target and kill cancer cells that has shown mixed success with infants. The drug, to be delivered intravenously, offers no guarantees. It could, in fact, cause additional long-term damage, or even hasten Matthew's demise.
Ben, 34, blurted out the first question that came to his mind: "Is Matthew dying? Was he born dying?"
replied no, that Matthew's organs were functioning normally and, aside from the malignant tumor, he was healthy.
"That was a pivotal answer to me," Ben said. "If he's not dying, let's let him live. Let's give him a shot."
Their baby had proved to be a fighter, after all, thriving after brain surgery. The couple rallied, found support from their families and friends and chose to view the daunting journey ahead as a blessing.
"We just looked at each other and said, 'If there's any chance at all, we have to give it to him,'" Sue said.
At 6 weeks old, Matthew weighed 8 pounds 15 ounces — having never turned down a decent bottle of rice formula, his mother noted. He sported the equivalent of a baby comb-over, with wispy dark hair and eyes that lean toward blue, like his dad. The only obvious sign of his precarious health was a jagged scar on his head that his parents massage daily.
He yawns and makes small, precious noises familiar to parents, but never wails or cries like a typical infant. Long before his birth, his parents followed a songwriter, Matt Hammitt, whose own child was born with heart defects. Little did they know that his song about that child, "All of Me," would become the thing that Sue said "gets me through."
"Afraid to love/ Something that could break/ Could I move on/ If you were torn away?
"And I'm so close to what I can't control/ I can't give you half my heart/ And pray He makes you whole."
In 2009, Sue's parents lost their jobs with an industrial cleaning service near Flint, Mich., and moved into the Ericksons' two-bedroom town house to help the couple with their growing family, which includes Matthew's older siblings Nolan, now 3, and Sophia, 17 months.
The arrangement turned out to be a godsend after Matthew's diagnosis upended their lives.
Louise and Bob Turner have helped bathe, feed and baby-sit their grandchildren while juggling doctor appointments.
Sue was able to continue work for a private investigative agency, and Ben returned to his teaching job at South Elgin High School.
The Turners completely support the couple's decision, though are admittedly afraid. The day of the surgery, when doctors first spoke the word "cancer," family members sat together in shock. Then each wandered off separately, heading down different corridors in the hospital to cry privately, Louise said.
"I don't know what chemo will do to Matthew," said Louise, 53, affectionately called "Nunny" by her grandchildren.
Louise was diagnosed with
shortly after moving to Illinois and underwent radiation treatment. She knows her grandson faces a formidable challenge. While her daughter avoids looking to the Internet for information about Matthew's cancer, Turner scours online medical sites, trying to balance her fear with her faith.
"One day, I got on my hands and knees and cried out to God saying, 'I don't understand,'" she said in a waiting room during a recent doctor's appointment. "I went to the hospital that day, and this peaceful feeling came over me. And then Matthew gave me this little smirky smile."
Louise watched Nolan and Sophia recently while pediatric surgeon Tord Alden met with Sue and Matthew in his Westchester office. Alden has been monitoring Matthew's growth and measuring his head to check if the tumor has caused swelling.
The doctor pointed to grainy images of Matthew's brain on a computer, before and after surgery. The white smudges that defined the monster in Matthew's brain were impossible to reconcile with the squirming, cooing baby in Sue's arms.
Sue asked if the doctor could tell if there was "good brain" beneath fluid and tumor. Alden said that he doesn't know.
"We do have kids where we take out half of their brain for seizures, and a lot of that function moves over to the other side of the brain," he said.
Sue was encouraged after hearing from the mother of another child who underwent chemotherapy at 10 days old and is now 4.
Lauren Strickland of Naperville emailed Sue to share her experience with her daughter, Paris, who was diagnosed with neuroblastoma at 9 days old and began chemotherapy the next day. Paris went on to have surgery, radiation, more chemotherapy and other treatments at Children's Memorial and
in New York, her mother said.
Today, Paris undergoes brain scans every three months to make sure the cancer doesn't return. She has some trouble with her walking gait but shows no sign of cognitive or verbal delays, Strickland said.
"Really, you have to accept there are some things you cannot control, as badly as you want to," said Strickland. She advised the Ericksons to stay strong and not be afraid to search for other opinions.
"There is a light at the end of the tunnel, possibly," said Strickland. "It's a rough situation."
Children also suffer fewer side effects, such as nausea, from the drug treatment, doctors say.
"When you hear cancer, you think, 'My baby's going to die tomorrow,'" Sue said. "You think of cancer as death. It was scary. But to know there are babies who have survived chemo ..."
Nationally, fewer than 1 percent of all pediatric brain tumors are congenital, or present at birth. The reported incidence of congenital brain tumors is 1.1 to 3.4 per million live births, according to research.
High-grade gliomas are not hereditary, and there are no known environmental causes for the disease. Dr. Rishi Lulla, a pediatric neuro-oncologist at Children's Memorial Hospital who is involved with Matthew's care, reassured Sue and Ben that there was no way they could have prevented Matthew's
"We really don't know why this happened to him," Lulla said. "There's nothing ever related to pregnancy, habits or anything associated with a congenital brain tumor. … That is where I wanted to be the firmest with them, to make sure they understand that."
Early on, Lulla and other specialists discussed Matthew's diagnosis and reviewed his test results during a meeting of the hospital's pediatric brain tumor board. Every week, about 30 oncologists, pathologists, radiologists, surgeons and
professionals fill a conference room to compare notes and come up with a recommended course of treatment for their most complicated patients.
"Given that Matthew is quite small and the tumor is quite large, we believe a surgery would be harmful," Lulla said.
Doctors were candid with Sue and Ben, telling them that without taking any action, Matthew would die.
Chemotherapy, when administered to children under age 3 with a high-grade glioma, offers a 40 to 50 percent chance of survival for three years, Lulla said.
"We really don't know," Lulla said. "Our best attempts to predict have been wrong."
Matthew could face surgery in the future, or, less likely,
. Some tumors go away and never recur, Lulla said. The size of Matthew's tumor and the potential side effects of chemotherapy present the biggest challenges, he said.
"We all agreed if Matthew was doing well, clinically, we would allow some time to pass so he could grow, develop an
and gain some weight," Lulla said. "We may at that point decide to begin chemotherapy, or if everything is going stable, we may elect to wait another few months."
Dr. Lainie Friedman Ross, associate director for the MacLean Center for Clinical Medical Ethics at the
, said that it is important for the medical team to give the family a choice of treatment or hospice — because the prognosis is poor — and support them no matter what they decide.
No one, no matter how medically astute, can predict with absolute certainty the outcome or child's quality of life.
"There's no right answer," Ross said.
"It's a really hard decision, and it's not the science alone that tells us to do X or Y," she said. "We view this very much as a shared decision, to have the family and the physicians work together to define what is best. Regardless of one's own preferences, it's very important to support and not to abandon the family, whatever they decide."
Support for the family has soared during Matthew's short life.
Louise started a
page for him, which has drawn nearly 150,000 page views worldwide. Every few days, she posts new pictures or video, holding Matthew up to her computer for close-ups of his chubby cheeks.
Students at South Elgin High, where Ben works, surprised the family in late January with a $5,000 check. They raised the money selling T-shirts that read "Grey Matters" on the front, with the Erickson family name on the back.
Sue and her mother broke into tears as hundreds of students filled the school's foyer and lined the balcony. Ben, who teaches radio and TV broadcasting, was suddenly on the other side of the camera as his students recorded the event.
"Initially, I didn't want to burden anybody with this problem. It's dramatic. It's heavy-duty," Ben said later.
He was overwhelmed by the outpouring of concern from his students, family and friends, who began calling and texting over winter break and haven't stopped. Then he realized, "That's what kind of kept me sane."
The Ericksons have health insurance but aren't yet sure what medical costs will be covered. They recently received an 18-page bill for $750,000, Sue said.
As Matthew has gained weight and grown stronger, it has been easier for the couple to be more optimistic. But the reality looms. Their baby will have his next brain scan in late February, when chemotherapy will be considered.
"I can't possibly give up on one of my kids," Ben said. "He's just so strong."