It’s there every moment of the day.

It’s there as 3-year-old Charlie Waller and his 7-year-old sister Esther, who said she loves her brother “googolplex (times) the world,” collapse in laughter after a game of hide and seek.

It’s there as Charlie’s mother Abigail Waller sleeps beside her children at night, comforting them.

It’s there as Charlie’s father John Waller, a history and Lyman Briggs professor, lectures students on the history of health care each week.

“You know what’s coming, and yet things seem somewhat normal,” John said. “It’s like seeing a movie for the second time, and you’re trying to forget the end of it to enjoy it, but there’s no real suspense or surprise.”

On April 1, 2011, Charlie was diagnosed with a rare brainstem cancer called diffuse intrinsic pontine glioma, or DIPG. Survival rates are slim to none, and most children die within a year of their diagnosis.

Almost a year later, Charlie isn’t bedbound or visibly sick. A beaming smile rests on his face as he plays dinosaurs with his sister or stops to admire a spider crawl by.

Last week, John and Abigail took him to the National Institutes of Health in Bethesda, Md., for another MRI scan, which showed no growth in the tumor woven into his brainstem. But it’s still there; a disease that has seeped into almost every aspect of the Wallers’ lives and changed what they call “normal.”

“In a story like this, it’s easy to think that one year into the story may mean that we are beating the odds and that it’s getting closer to that miracle of Charlie beating this and overcoming it,” said Abigail, who took a leave of absence from her work as a field liaison and partnership coordinator at the MSU School of Social Work to be with her children. “The reality is that’s not the case. Unless one believes in miracles … there is no beating the odds here.”

When things began to change
Around this time last year, Charlie began having constant headaches. His walking deteriorated, and his right eye was losing vision.

A CAT scan at Lansing’s Sparrow Hospital showed no signs of a tumor, but when the results of an MRI came back a week later, the nurses, technicians and doctors working on the scan understood the gravity of the situation.

“There were at least two or three people in that room who were crying. They not only knew what this meant for this family and this child, but they could see their own children in him,” said Stephen Guertin, medical director of the Sparrow Children’s Center and MSU associate professor in the College of Human Medicine, in a previous interview.

Charlie was given a massive dose of steroids to reduce the swelling in his brain caused by the tumor’s growth. Without the radiation, doctors said he might have had as little as a few weeks to live.

“(There was) an overwhelming sense of shock and loss, because within a few moments we’d gone from a long future to maybe as little as three months,” John said.

By the end of the six-week-long, five-day-a-week radiation treatments and because of the effect of the steroids, Charlie’s usually thin body fattened and his face became round and pudgy. The steroids turned his mood volatile too, and he often screamed and cried with frustration as he tried to understand what was happening to his small body, his parents said.

Unlike other cancers, DIPG is strewn like sand across Charlie’s brainstem, making it impossible to operate on. Traditional treatments, such as chemotherapy and radiation, can help shrink the tumor but are mostly ineffective.

In August 2011, the family experimented with a ketogenic diet — a diet comprised mostly of fat and little to no carbohydrates, which might starve the tumor of the nutrients vital to grow.

There have been no clinical studies to prove a ketogenic diet can reduce the size of brain tumors, although it has been shown successful in treating cancer in some isolated incidences.

But after two months of weighing every ounce of food Charlie ate and having Esther eat tomatoes in the basement so her brother wouldn’t cry with jealousy, John and Abigail began to wean their son off the diet.

“That was an incredibly hard decision because we felt like our hope just went out the window,” Abigail said. “Even now, I feel like I’m poisoning him when I give him anything with sugar in it.”

Now, Charlie’s parents live with the frustration of being powerless to do anything to fight the cancer.

“We don’t feel like we’re fighting,” Abigail said. “I think that’s what’s so different from other childhood cancers or other cancers, is that you have treatment (options).”

Living in the present
Traces of the trauma he’s endured are hard to see as Charlie runs around roaring ferociously with his fingers curled into pretend T-rex claws. Charlie now is entering the “honeymoon” stage of the disease. The round of radiation reduced the size and swelling of the tumor, and since it has not yet grown back, he isn’t experiencing any physical symptoms of the cancer.

“It’s trying to have a normal life, but also … to savor every moment and make it meaningful,” Abigail said. “When it’s been hard is when we slip into thinking about the future.”

Charlie’s mornings now are spent in a special education preschool class at Pinecrest Elementary, 1811 Pinecrest Drive, tightly clutching his stuffed dog named Hot Cocoa and practicing counting to 10.

John’s face stretched into a grin last week as his son tenderly placed a pink flower in a glass of water. It’s those kinds of moments that bring so much joy to Charlie’s parents, although they’re shrouded with a glum reality, John said.

“He is (an) incredibly kind, engaging little boy, so you’re always delighted by him,” John said. “But that’s nearly always followed by a painful realization.”

Although Charlie’s tumor has not started growing again, the family still needs support during this time, DeWitt, Mich., resident Sandy Smith said.

Smith’s son Andrew died in December 2009 from DIPG. She said the honeymoon period often gives families false hope for their children.

“It’s easy for people to back away and not give as much support,” Smith said. “While there may not be as much of a physical problem, I can guarantee the stress they’re going through is unimaginable.”

Finding good in something bad
Despite the pain they feel, the Wallers hope their grief has a broader meaning.

Since Charlie first was diagnosed, East Lansing and MSU community members have rallied around the family in support.

John’s co-workers, former students and neighbors volunteered at a charity garage sale and art auction this summer to help raise money for the family to go on vacations together and brought the family meals in the weeks following the diagnosis.

Since he first read about Charlie’s disease, psychology junior Nicolas Waldecker has been driven to help. He helped organize an ongoing bottle drive at East Holmes Hall, which currently is accepting donations. Last semester, the drive raised about $400, Waldecker said.

“It’s absolutely fantastic in how the students and staff are stepping in and helping one of their fellow peers and/or colleagues,” Waldecker said. “We see things in the news every day and say we should (help), but never do. Now, we’re doing something.”

Because Charlie is doing so well outwardly and the amount of medical expenses they might incur later is unclear, it’s been a humbling experience for John and Abigail to accept the help from the community, Abigail said. For John, it’s important that the events bring the community together and give something back to those involved.

“A number of people got to know one another better as a result of it,” John said. “Those events were positive for everyone involved and not just for Charlie.”

Abigail knows her life never will be normal again. Now, her challenge is to find the good in something bad.

“Our mantra is, ‘What good can come out it?’” Abigail said. “What can we do with this experience later in making something horrific in some form a little bit meaningful?’”

The Wallers currently are planning another charity art auction scheduled to occur either late this year or early 2013 and are looking for student artists to donate work.

For more information and ways to help, visit friendsofcharlie.com.