Doug Clark: New treatment offers hope to family who has gone through hell

Her tiny face greeted me from the window of the tidy Spokane Valley home.

Cute as a bug, the 2-year-old beamed a wide grin and then disappeared as I approached the front door.

I heard little fingers fumbling on the doorknob. Then some helpful Mom fingers joined in, and the door finally opened to reveal Cevanah Williams, the girl I had come to see.

Cevanah graciously accepted the plush toy kitty that I brought for purposes of icebreaking. She toddled off while I said hi to her parents, David and Michelle.

Sporting a Minnie Mouse shirt, Cevanah could pass for any other playful kid.

Until she turns her head, that is.

It’s impossible to miss the large, C-shaped scar that was created by two brain surgeries. It hovers just above the girl’s right ear.

“C” for Cevanah.

“C” for cancer.

The world shifted for the Williams family late last summer.

David is a plumber who operates his own company, Kodiak Plumbing. Michelle helps with the books and the billing.

The couple has two other children: Cody, 6, and Cierra, 9.

And everything was fine until some odd light brown spots began to appear on Cevanah’s body.

The medical specialists soon realized what they were dealing with: NF1, or neurofibromatosis, a genetic condition that can cause cancerous tumors.

Within weeks, Cevanah began having seizures.

David said his daughter would drool or stare off vacantly into space.

An MRI revealed the culprit: a golf ball-size tumor located in the right lobe of her brain. Her first surgery took place last August.

Everything happened so fast, said Michelle.

There was virtually no time for hand-wringing or for feeling overwhelmed.

“We were thrown into it. There was no preparation.”

David agreed, adding, “We were just trying to save her life.”

I learned about Cevanah thanks to an email from Michelle’s former employer, AR Tools & Machinery.

On March 12, the Spokane Valley business will hold “Hope For Savi,” a dinner with a fundraising raffle and auction.

The event will take place at the AR headquarters, Building C, 12009 E. Empire Ave., in Spokane Valley. (Doors open at 4 p.m.)

In addition, donations to a Hope for Savi fund can be made at any Banner Bank branch.

Even with insurance, the added costs of a crisis like this can be ruinous.

The emotional toll is incomprehensible.

One day everything is fine. Next day you’re facing a hell on Earth and trying your best to understand terms like “spontaneous mutation” or “pleomorphic xanthoastrocytoma” with “anaplastic features.”

Michelle said 80 percent of the tumor was removed in the first surgery.

A January check, however, showed Cevanah’s cancer was growing back.

A decision was made to be proactive and Cevanah’s second surgery took place at Seattle Children’s Hospital on Feb. 19.

It was a good move “because it was really spreading fast,” Michelle said. The cancer “has a mind of its own.”

Adding to the optimism is that Cevanah was able to benefit from a cutting-edge new procedure called “Tumor Paint BLZ-100.”

The drug is “designed to improve surgical outcomes in children with brain tumors,” according to a Seattle Children’s news release.

It sounds like science fiction in that BLZ-100 is made from scorpion venom and causes cancer cells to give off a greenish glow.

Developed by researchers at Seattle’s Fred Hutchinson Cancer Research Center, the children’s hospital and the University of Washington, BLZ-100 allows surgeons to differentiate the bad cells from the good cells.

“They feel pretty confident (they got it all),” said Michelle, adding that the surgery was very close to the part of the brain that controls motor skills.

And today? The Williams family is treasuring every moment they have with this too-cute kid named Cevanah.

“People have been wonderful,” Michelle said.

The last surgery “was pretty tough and the nights are long, but we’re very hopeful.”

Doug Clark is a columnist for The Spokesman-Review. He can be reached at (509) 459-5432 or by email at dougc@spokesman.com.