Story and photos by Steven Powell
Marysville Globe
MARYSVILLE — Reese Estes 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 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. “No more pokies,” Reese told him.
That was evident one recent day when a team of doctors and nurses came in, and she didn’t even want them to look at her port.
Josh said one 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, 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 just 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 worst,” 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 are diagnosed 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 four to six months. Reese started treatments about six 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 that treatment.
The following weeks included more rounds of chemotherapy. Reese lost her soft, reddish-brown, curly hair.
“We’re getting through it,” Josh said. “She’s a fighter. She’s in a lot of pain. It’s hard to watch.”
Treatment was delayed recently because Reese had a fever and also needed a platelet and red-blood cell transfusion.
“That re-set the clock. She has to be fever-free for 24 hours,” Josh said.
Reese also has had to be in isolation, so her sister couldn’t visit her.
“When’s she coming home?” Josh said Ella keeps asking. She’s not been home since May.
He said Kelly is physically and mentally exhausted.
“She doesn’t want to leave Reese’s side,” Josh said.
He added that there are some “great little stories of humanity amid the chaos.”
For example, the Mariners gave them tickets to go see a recent game against the New York Yankees. And, at a mall, a woman gave both Reese and Ella bracelets, explaining she had just overcome cancer.
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. 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.
He said he has a hard time accepting help. “As parents, we should take care of our kids,” he said.
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 be his doner 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 29, 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. 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 a family tragedy hits. 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, 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 website 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.”
Fundraisers and events
gofundme.com, mealtrain.com, youcaring.com.
Aug. 5: Silent auction and spaghetti feed, 6 to 9 p.m., Lake County Baptist Church, 8830 Eighth St. SE, Lake Stevens. To donate items or more details call Becca Dalitz at 425-492-5205.
Aug. 19: Blood drive in honor of Reese Estes and Layla Beckstrand, 10 a.m. to 4 p.m., Marysville United Methodist Church, 5600 64th St. NE. Layla, now 3, had 38 blood and platelet transfusions during her 11⁄2 years of cancer treatment. Reese, 2, had her first blood products within the last few weeks. Sign up at www.psbc.org.
Oct. 21: Team Reese “Light the Night” 5K Walk, 5 to 9 p.m., Seattle Center. Event is free, but if you wish to donate or fundraise you will be given a red balloon with a light inside that makes a stunning tribute to all who are fighting cancer. Sign up at pages.lightthenight.org.
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