SEATTLE – Reese Estes of Marysville loves smiling, stickers, band-aids, drawing on her tablet, hugs, her family (especially her sister Ella) …

She also loves to make her dad Josh laugh by raising her eyebrows.

But she doesn’t love cancer. “Shud up cancer,” she said this week in her room at Seattle Children’s Hospital. She has a shirt that says, “Cancer messed with the wrong kid.”

Josh said Reese is having a tough time, and her treatment is just starting. “No more pokies,” Reese said.

That was evident this week when a team of doctors and nurses came in, and she didn’t even want them to look at her port.

Josh said the other night it took four people to hold her down. “She was screaming in agony, she was so afraid,” he said, eyes tearing.

Josh, 34, first noticed there was something wrong with Reese, who is 2 1/2, on his birthday, Feb. 26. He was fixing her hair when he saw a large mass on her neck. They went to a walk-in clinic and were told it was mumps. That made sense as they recently had been to a gymnastics meet in Tacoma where there had been an outbreak. They were told to wait it out. Tests eventually came back negative, but the mass was still there.

The parents kept fighting for answers. More testing was done and more waiting. Weeks later a biopsy was done. “We cried all night thinking it was the worse,” Josh said of he and his wife Kelly.

But it wasn’t cancer, they were told. “We were happy as can be.” However, doctors weren’t sure what is was, so the Esteses were sent to Children’s to see if it was an infectious disease. World-renowned experts were brought in because it was an anomaly. “The team of doctors was intimidating,” Josh said.

Three months into it they were told it was some type of bacteria, not cancer. One doctor must have told them that five times, Josh said.

Whatever it was, they decided to surgically check it. “She woke up a monster,” coming out of surgery, her dad said. “She fought until she passed out.”

Within days, Josh was in a work meeting when he got a phone call from his wife. “Kelly couldn’t talk. I thought Reese had died,” Josh said.

When she was able to compose herself, Kelly told him Reese has a “fast-moving cancer that needs to be treated right away.”

Burkitt’s Lymphoma

Reese has Burkitt’s Lymphoma, but Josh said don’t Google it because it’s scary, saying it’s rapidly fatal if left untreated. It is a rare cancer – only a handful each year at Children’s. It is an aggressive cancer but if treated there’s a high success rate.

The Esteses are communicating with a family in Stanwood that recently went through the same thing. That family’s ending turned out positive, even though the child started treatment at Stage 4 and had more tumors. Reese is at Stage 2, and her tumor was isolated to her neck.

While many children’s cancers are treated over years, this one is treated aggressively for from four to six months. Reese started treatments a few weeks ago. The first week was the reduction stage. The growth shrank about 30 percent.

“Steroids can kill the cancer, but not keep it from growing back,” Josh said of the treatment so far.

The coming weeks will include more chemotherapy. Reese will start to lose her soft, reddish-brown, curly hair.

The Esteses have a lot of community support, but as a family of faith Josh is asking for more.

“Prayers are the most powerful thing,” he said.

The Esteses have belonged to United Methodist Church in Marysville for six years. Kelly has been involved in the church nursery, especially in the last year or so. Both daughters were baptized there. When pastor Jenny Smith told the congregation about the cancer recently she choked up, as Reese is her son Wesley’s best friend.

“Knowing other people share our belief with compassion and care helps,” Josh said. During church each week, worshipers tie knots in quilts made by members during prayer. Reese and the family have two such blankets.

Photos of many of the supporters are on a website Josh has made. He said those photos often help calm down Reese, along with her blanket, happy face pacifier and purple teddy bear Fiona.

Amazing support

Josh said their family, friends and church community have been amazing. “We have a lot of people in our corner,” he said.

Josh said he has a hard time accepting help. “As parents we should take care of our kids,” he said.

So he has distanced himself from any fund-raisers.

But so many others want to help. “It helps get Kelly through the night,” Josh said of the community’s support.

Josh has been active in volunteering for years, such as with United Way.

“You never think you will be the recipient of the help,” he said, adding he’s been busy writing to those who have sent Reese cards.

Josh is thankful for many things and many people, but he said he looks up to his wife and her family.

Kelly’s brother had cancer when he was young. Years later it came back. He needed a bone-marrow transplant, but Kelly couldn’t do it because she was pregnant with Reese. And now this.

“Their whole lives have been consumed by cancer,” Josh said.

He said life has prepared him for this moment. He said Kelly is the “strong” one, and he is the “soft” one, but he became tougher after the Kimberly-Clark Mill closure in Everett. At 25, he was the union president and was told the plant had been sold, saving 800 jobs. But that didn’t work out. Since then he said he has learned to keep his emotions more in check. He now works varied shifts at the power plant at the University of Washington. He also has a lobbying firm. Josh supports state Rep. June Robinson’s Family Medical Leave Act bill that would cover births and serious illnesses. Since his job is fairly new, he doesn’t have much vacation time. He can get 12 weeks of unpaid leave through FMLA. But under Robinson’s measure, that time off would be paid.

“Nobody should have to choose between going to work or being by their kid’s side for a surgery or chemotherapy,” he said.

Josh said this situation is tough because there are no directions on what to do when such a tragedy hits a family. He said they are learning to communicate through all of the emotion.

“We just want Reese to get better, and Ella not to be traumatized,” he said.

Ella has had it rough. “She wants to be with us,” Josh said. But they want her to try to have as normal of a life as possible so she is staying with her grandparents, was going to school until Tuesday, and doing her gymnastics and other obligations.

She was especially upset on Father’s Day when she only saw her dad for an hour before he went to work. She wanted him to take the day off.

“Kids don’t have a filter. There was nothing we could do to console her.”

Ella’s second-grade teacher at Marshall Elementary, Elizabeth Bray, has helped, coming over some nights to comfort her.

When Bray recently had a birthday herself, her wish was for her co-workers to all wear lime green in support of Ella and Reese.

“They are angels,” Josh said of all the support.

One thing they have learned already is to not be afraid to question doctors.

“Go with your gut. Trust your instincts. Keep pushing,” Josh said.

He added that many people don’t push because they fear what it could be. But some are also worried about the stigma.

“Don’t be afraid to challenge somebody just because they have an MD,” he said. “Don’t worry about the stigma of being a pushy parent. Don’t be afraid to be wrong.”

Josh admitted even though they are at one of the premier hospitals in the world, “We’re still scared.”

Blog

Josh Estes of Marysville is blogging about his family’s experiences with childhood cancer.

He built a webpage at www.shudupcancer.com.

He is blogging to share information to support others going through similar experiences because not everybody has a community of support like they do. “It’s a coping mechanism. I like to write. I just spill it out,” he said. “We want to spread awareness and tell their stories to get support.”

Fund-raisers

•June 24, 10 a.m. to 3 p.m., United Methodist Church in Marysville, bake sale, vendors and silent auction items that include: Seahawks, Mariners and Sounders stuff; a set of tires; house cleaning; photo package; high-end headphones and much more.

•The church is selling lime-green t-shirts that say, “Team Reese #Shudupcancer.” It also has lime-green bracelets that say, “Reese’s Prayer Army.” Proceeds go to the family

•June 27, Reese’s sister, Ella, is active in Rising Stars Gymnastics, which is having a “Flip for Reese” camp from 10 a.m. to 2 p.m. They are also selling leotards.

•gofundme.com, mealtrain.com, youcaring.com. So far, about 120 donors have given more than $10,000.