Rock Creek Elementary School in Beaverton has rallied around kindergartner Gracie Williams, diagnosed with an incurable brain tumor.

TIMES PHOTO: JONATHAN HOUSE - Gracie Williams is fighting a rare and aggressive form of a brain tumor. It started in Lori Spivey's kindergarten classroom, with a collection of pennies and nickels.

It spread throughout Beaverton's Rock Creek Elementary School, as classroom after classroom got involved.

It's moved on to the homes and workplaces of the Rock Creek families.

Everyone is working to help Gracie Williams, a kindergartner who has been diagnosed with an incurable brain tumor. "Incurable" doesn't mean "untreatable," and right now, parents Emily and Jamie Williams and their second-grade son, Liam, are doing everything they can to get the treatment Gracie needs.

But they're not doing it alone. To date, the students, staff and families of Rock Creek School have raised $10,069.65.

A penny at a time.

"We can't even believe the outpouring of love," Emily Williams said. 'It's been amazing."

TIMES PHOTO: JONATHAN HOUSE - Emily and Jamie Williams with their daughter, Gracie, in front of her kindergarten classroom.

A nightmare scenario

It began the week of Thanksgiving 2017, when Gracie, 5, began "winking" when she talked. Jamie blushes a little when he admits he didn't understand what she was doing. "Honestly, it was cute. I thought she was being cute."

She wasn't.

"It took us a while to realize: she wasn't winking," Emily said. "The other side of her face wasn't moving."

The tall, energetic kindergartner also was experiencing headaches and lethargy. The couple made an appointment for a magnetic-resonance image of their daughter's brain.

Two weeks after Thanksgiving, the MRI was back and doctor's at Oregon Health & Science University's Doernbecher Children's Hospital told the couple they needed to schedule brain surgery.

"We said, 'When?' And they said, 'Tomorrow,'" Jamie said.

A biopsy showed the root cause of Gracie's problem: A diffuse intrinsic pontine glioma, a highly aggressive brain tumor.

"Intrinsic," in that the tumor has caked parts of Gracie's brainstem, making it difficult to reach.

"Pontine," because it's in the pons, that section of the brain connecting Gracie's medulla oblongata and her thalamus.

"Glioma," in that it has attacked her glial tissue, which is designed to support and protect the brain's neurons.

All of which adds up to an incurable brain tumor.

The first surgery managed to remove 30 percent to 40 percent of the tumor: the winking stopped, and Gracie now has only partial paralysis. She's undergoing chemotherapy and radiation therapy. She's had a permanent catheter installed in her arm, so she doesn't have to suffer the needle prick every morning. She's experiencing hair loss and fatigue.

But she also has become a rallying point for her entire school.TIMES PHOTO: JONATHAN HOUSE - Lori Spivey's kindergartners at Rock Creek Elementary School have spearheaded the fundraising for classmate Gracie Williams.

One community

Lori Spivey's kindergarten class, late on a Friday, is a study in controlled and calculated chaos. The kids are active and happy, darting about a curriculum-rich environment, interacting, learning and playing.

Spivey explained to her students that their classmate was sick. The students wanted to do "an actual project."

She let them pick what they wanted to do. Their choice: Print their own money.

First rule of Lori Spivey's class: Even altruism is disguised as a civics lessons.

If the kindergartners couldn't print money, they could collect it. They painted boxes. They voted on a logo — Gifts For Gracie. With the help of their fourth-grade cohort class, they made 60 posters to be distributed around Rock Creek School.

They wrote speeches.

They took their campaign from classroom to classroom.

A paper thermometer was set up outside the main office. Counselor Michelle Solberg said the goal was to raise a couple thousand dollars to help the family.

"We got $2,000 on Day 1," she said, shaking her head in awe. "I've been doing this a long time. I've never seen anything like this."

One of the students went to her mom's place of work and dropped off the handmade, pink Gifts For Gracie box.

The box came back with $875.

One of Jamie's friends sent him a photo from a break room at Intel. And there it was: another of the telltale pink boxes and a poster for Gracie.

It's been a long four months for the Williams family. Both work for Standard Insurance; Emily as a supervisor in Underwriting and Jamie as an actuarial analyst. It's the third company at which they've worked together. They met as high school sophomore in 1996. They've been a couple since their senior year in 1998.

The family has exhausted their options at OHSU. Emily and Gracie plan to move to San Francisco — they have family there — and to see if Emily can be accepted into a clinical trial at the University of California at San Francisco. If not there, maybe Stanford University.

"There is no FDA-approved protocol in the U.S.," Emily said. "Our only hope is clinical trials. That's where it's at now."

The family has established a GoFundMe account. Through a website called Meal Train, people have been fixing meals for the family for weeks now. They have a Facebook page and a blog.

"We can't believe the outpouring of love," Jamie said. "The community has been amazing."

Emily nodded. "Rock Creek has been amazing."

Want to help?

Here are links to the Williams family social media sites:




Meal Train

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