Since Charlie Waller, 5, first was diagnosed in April 2011 with diffuse intrinsic pontine glioma, a rare and inoperable brainstem tumor, his parents have been watching and waiting.

Most children die within a year of their diagnosis, but in 2012, Charlie was in school and playing with his friends and sister Esther, like any other 4 year old. About a year ago, he lost control of his right eye. Two months ago, the painful headaches started, and he lost vision in his right eye completely.

Charlie didn’t tell his parents — he knows they worry about him. When doctors ask him to rate the pain, he answers anything from one to 10. When his parents John and Abigail ask, he always says, “Zero.”

He felt sick on Halloween morning but insisted his parents take him trick-or-treating, said John, an MSU associate history professor. Two hours later he threw up, and within days, he lost his balance until he no longer could stand or sit up on his own.

A week ago, he slept for hours curled up in a swath of blankets on the couch, eased by the morphine and cocktail of eight other medications his parents give him.

But even as Charlie struggles to deal with the growing tumor and the cerebrospinal fluids quickly building up inside his head, it never occurred to the Wallers to put the art auction on hold.

Last year, they raised nearly $50,000 to donate to Lansing’s Sparrow Hospital and Hospice of Michigan, a free service for terminally ill children that makes nurses available to come to their homes or answer questions around the clock. The first year brought in about $13,000 just for the Waller family.

“It’s really amazing, given how small it began,” John said. “It’s really heartening because this is something that can continue even if Abby and I have to drop out or can’t be involved in this stage.”

Art with purpose

So far, local and international artists have donated more than 100 pieces for the art auction, ranging in value from $20 to $2,000, including colorful paintings and mobiles from East Lansing schoolchildren.

Charlie and his classmates helped create a painting of four birds, one dressed like his favorite: pirates. A professional painting features a boy and a girl dressed in pirate garb complete with a hat, staring out into a moonlit night as a ship sails away in the distance. It was painted especially for Charlie, courtesy of St. Johns, Mich., artist Tracie Davis.

Davis has been involved with the auction since Abigail introduced herself and gave her a brochure at the East Lansing Art Festival.

Charlie’s story stuck with her.

“I have a 5-year-old daughter as well,” said Davis, who now chairs the art jury. “When I read the brochure, I couldn’t help but cry. I knew I wanted to help.”

Helping at home

Since Charlie’s health started to decline, friends and family have swarmed to rally the Wallers. On top of that, pediatric hospice nurses filter in and out of their home. Their support means Charlie can stay at home to play with Esther and his collection of pirate, zombie and dragon toys.

Money from last year’s auction helped fund a pilot ?hospice program of Sparrow nurses.

Funds raised this year also will go to Hospice of Michigan, which helps give families a chance to be together and enables children to stay in the comforts of their own home, Hospice of Michigan Executive Director Marcie Hillary said.

“I’ve been working for Hospice of Michigan for 16 years now, and what I’ve learned from both pediatric and adult patients is that they usually want to be at home,” Hillary said.

Other money will go directly to needy families dealing with the death or serious illness of a child to help provide counseling, therapy and coverage for other expenses.

Hopefully, funding from this year’s auction will reach $70,000, said Richard Graham-Yooll, Abigail’s father and the executive director of the Art for Charlie Foundation.

It’s a drop in the bucket compared to the statewide need for pediatric hospice care, he said.

Graham-Yooll had doubts when Charlie first started his decline, but both John and Abigail were adamant about continuing to make “the horror that we go through worthwhile.”

“It’s a motivation to get something good to come out of it,” Graham-Yooll said. They are “continuing in the honor of Charlie, in the honor of our family and for the best interest of the community.”

For John, it’s perfect timing.

“This is the point at which we have an even fuller appreciation for the importance of hospice because Charlie’s is now a recipient of that care,” John said. “There’s never been a more appropriate time to have it.”

The Art for Charlie children’s silent auction is scheduled to open today.

It is set to run until Thursday in the lobby of the Marriott at University Place in downtown East Lansing.

The Art for Charlie show is scheduled to be held from 6-9 p.m. on Nov. 14 at the Marriott.

Tickets are $30 and can be purchased at artforcharlie.com or at one of the local Schulers Books & Music locations — 2820 Towne Center Blvd. at Eastwood Towne Center in Lansing or 1982 Grand River Ave. in Okemos.