With smiles on their faces, Abigail and John Waller watched as their son wandered through Potter Park Zoo on his third birthday.

After grinning with delight as he rode a camel, fed penguins and pet a possum, their son — Charlie — blew out a candle from his dinosaur-shaped cake on Wednesday.

A memorable day in any child’s life, Charlie’s birthday had a special meaning. He was diagnosed on April 1 with diffuse intrinsic pontine glioma, or DIPG, a rare and inoperable form of brain cancer.
With the best treatment, he might have between months and years to live, his parents said.

After undergoing radiation therapy and high dosages of steroids to reduce brain swelling, Charlie has entered the “honeymoon” stage of his struggle with cancer. It might take months for the tumor growing on his brain stem to take noticeable effect, his parents — both MSU employees — said.

For now, John, a Lyman Briggs associate professor, Abigail, a field liaison and partnership coordinator in the MSU School of Social Work, ­­and their 7-year-old daughter Esther Waller can enjoy spending time with Charlie as he regains the personality and physical strength he lost when he was taking steroids.

“We’re making sure we are out and enjoying life with Charlie,” Abigail Waller said.

The disease takes hold
Before Charlie’s diagnosis, the only signs of their son’s illness were his struggles with speech and a head tilt, Abigail Waller said.

The parents grew concerned after they realized whatever was making Charlie tilt his head also was causing him pain, she said.

An MRI showed what looked like a handful of sand had been thrown on Charlie’s brain stem.

As a group of nurses, technicians and doctors from Lansing’s Sparrow Hospital saw the results, they knew the family faced a “grim situation,” said Stephen Guertin, medical director of the Sparrow Children’s Center and MSU associate professor in the College of Human Medicine.

“Everyone recognized the severity of what they were looking at,” Guertin said. “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.”

For John Waller, realizing his son’s potential would be cut short dealt a painful blow.

“I remember my thought minutes after the diagnosis was just a crushing awareness that he would have been an extremely good person,” John Waller said.

Without radiation, Charlie would have had weeks to live, his parents said.

But the trauma and steroids from radiation treatments made Charlie rapidly gain weight, become almost completely immobile and suffer anxiety to the point of psychosis, Abigail Waller said.

His personality traits were exaggerated by the steroids. A love for animals turned into “an absolute obsession,” John Waller said. In the hospital, Charlie would demand more toy animals — there never were enough, the father said. Nurses brought him a new animal every day after his radiation treatments.

Charlie coped with the trauma of hospital visits and steroids by picking at his lips, falling asleep and essentially “shutting down” during their weekly visits to the clinic, Abigail Waller said.

Physically, Charlie was transformed. The steroids gave him an insatiable appetite, but the radiation damaged his taste buds.

Day and night, his parents worked to find foods he would eat and enjoy. The constant eating caused weight gain and swelling in his cheeks.

Looking at a picture of him before his diagnosis, Abigail Waller realized the change in her son.

“When I see that picture of Charlie, I do think, ‘Oh, who is that?’” she said. “He’s different now. It’s not long ago, but he’s different.”

A waiting game
As the disease takes hold, Charlie’s ability to function slowly will deteriorate, Guertin said. At this point, it’s unclear when that will be, he said.

His sensory perception, strength and balance will be lost as the cancer grows on his brain stem, Guertin said.

“At some point in time, he will start to become cut off from outside (the) world,” Guertin said. “He will not appreciate it.”

Even now, his parents struggle to help Charlie understand what’s happening to his body. Conversations with their son are limited because of his young age, and that can be good and bad, John Waller said.

“He must at some level be thinking, ‘Why would my dad be subjecting me to this?’” the father said. “On the other side is that he doesn’t have any conception of what is going to happen and any way of finding out. So he doesn’t have to suffer from the anticipation.”

But both parents said, to some degree, Charlie knows his life has changed.

“I suspect that it’s a more generalized anxiety and knowing that something’s wrong,” John Waller said. “He’s too young to have a conceptual awareness of things like mortality.”

Enjoying life
Although they haven’t made their final decision yet, the family probably will chose not to pursue chemotherapy treatments for Charlie, his mother said.

The benefits of chemotherapy on this type of cancer are unclear, and it might cause him unnecessary discomfort and anxiety, she said.

In the coming months, they want to make sure the time they spend together as a family is memorable, she said.

At the zoo, Esther Waller coaxed birds to her and brought them to her brother to feed while the family explored their habitat.
She’s “surprisingly empathetic” and sensitive to his situation, John Waller said.

“In fact, (her brother’s diagnosis) has diffused a lot of the sibling rivalry there used to be,” he said. “Mostly because she realizes that something has changed.”

Still, each moment they spend together is weighted in face of a disease that most likely will take their child’s life, Abigail Waller said.

“It’s definitely bittersweet at the moment,” she said. “As happy as we are at seeing his delight, it hits us deeply because we don’t know how long this period will last.”

The family will be holding a charity art show and auction at Dublin Square Irish Pub, 327 Abbot Road, from 6-10 p.m. June 22.

Proceeds will go to fund vacations for Charlie and his family.
Artists can donate original pieces for the show. Tickets are $10 and can be purchased in advance at friendsofcharlie.com or at the door.

For more information and ways to help, visit their website.