Last updated: February 16. 2013 9:54PM - 146 Views

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CHICAGO - Peering intently at the tiny white smudge in their baby's brain scan, Sue and Ben Erickson could see that the image did not reveal the miracle they had prayed for.

The cancer still lurked, though it had shrunken significantly after five rounds of chemotherapy. The news was as good as they could expect, realistically, and the doctor was upbeat.

"It looks good. It looks good. I'm happy," said Dr. Rishi Lulla, a pediatric oncologist, as he reviewed the images at Lurie Children's Hospital in Chicago. "It's substantially, substantially better."

The results from last week's MRI marked a pivotal time for Matthew Erickson, who, at 8 months old, has charmed every nurse with his single-toothed grin. He was born Dec. 11 with an especially aggressive form of brain cancer, a high-grade glioma that developed while he was still in his mother's womb, even though it's most often diagnosed in adults.

The cancer, whose causes are unknown, had engulfed most of the right hemisphere of Matthew's brain. Only about five children nationally are born each year with such a rare, usually fatal, condition, his doctors said when the Tribune first chronicled the family's story in February.

At the time, doctors gave the Huntley couple a difficult choice: bring Matthew home with a hospice team, love him and keep him comfortable until the inevitable. Or, they could treat the cancer aggressively with chemotherapy, a toxic cocktail with no certain outcome.

While used successfully with some other babies, chemotherapy could cause additional long-term damage or even hasten Matthew's demise, the doctors warned.

Matthew seemed determined to make the decision for the couple. He was a born fighter, his parents said, and he rarely cried, making the treacherous journey a bit less emotionally taxing on his parents.

Even when he throws up, he smiles, his mom said.

"You look at him, you look at his eyes, he has life," Sue Erickson said.

Matthew has spent at least two to three weeks each month in the hospital, dealing not only with the chemotherapy's side effects, but complications from diabetes insipidus, a kidney condition marked by excessive urination that can lead to dehydration. He also suffers brain seizures, which are likely caused by the tumor and surgeries, Lulla said.

Meanwhile, time marched on. The couple's son, Nolan, 5, just started kindergarten. Their daughter, Sophia, recently celebrated her second birthday with a "princess party."

Matthew's saga splashes over into daily routines. Sophia one day picked up a calculator, held it to her ear like a cellphone, and said, "Dr. Lulla? Dr. Lulla?"

Sue's parents, Louise ("Nunny" to her grandchildren) and Bob Turner, help juggle child care and doctor appointments.

School also started last week for Ben, a teacher at South Elgin High School.

Hundreds of students surprised him last spring with a donation for Matthew, whose every visit to the hospital generates a lengthy bill. The most recent invoice was 69 pages long.

"Thank God for insurance," said Ben, who was not sure where the total stands.

After the MRI, Matthew awakened from sedation smiling, as usual.

Sue, Ben and Louise huddled around a computer with Lulla, a physician in the hospital's Division of Hematology, Oncology and Stem Cell Transplant.

He pointed to the screen showing four images of Matthew's brain from MRIs taken in December, February, May and July.

The change was obvious, even to a layman.

Instead of gray brain matter, the scan taken eight months ago revealed a gaping dark cavern in the brain's right hemisphere, where excess fluid had collected in the oversized ventricles, or cavities that allow the flow of cerebral spinal fluid. The tumor was hunkered down in the middle, a small bright white spot.

By May, the tumor was "very subtle," Lulla said, pointing to a smidgen of white against gray. Brain surgeries to remove portions of the tumor and fluid had been successful, as well.

"What if we had decided to do nothing? What do you think would have happened?" Ben Erickson asked, as the couple sat quietly, absorbing the information.

"I don't know the answer. I think he would have died, not from the tumor but the (pressure of fluid-filled) ventricles," Lulla said. "Our goal is to stop the tumor from growing and get Matthew to grow around the tumor."

Sue Erickson asked the next big question: "Is there ever going to be a point where there is no cancer?"

Probably not, Lulla said. Even a few abnormal cells left behind may lead to the cancer's return, he explained.

On Aug. 21, Lulla and Dr. Tord Alden, a neurosurgeon, laid out Matthew's case to the group of about 20 people. As they viewed brain images projected on a large screen, specialists questioned whether they were looking at scar tissue or tumor, and how fast, if at all, the cancerous cells would spread.

At 9 p.m. that night, Lulla called the couple and discussed options.

Some doctors felt that the chemotherapy should continue. Lulla and Alden recommended giving Matthew a two-month break, during which time they could also treat his brain seizures with steroids.

"Ben and I, we almost knew the ball would be put into our court and we would have to make that decision," Sue Erickson said the following morning.

The couple decided to follow the advice of the doctors who know Matthew best, Lulla and Alden. The steroid treatment should be far easier for his body to tolerate than the chemo, said Lulla, the recent recipient of a nearly $100,000 research grant from the St. Baldrick's Foundation, a charity that raises money to combat childhood cancers.

"Nothing is guaranteed," Sue said, recalling that there were those who doubted the couple's decision to proceed with chemotherapy in February. "There was a risk then. There is a risk now."

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