A new bed next to a New York Yankees rug replaces the bunk bed Ethan Jostad shared with his older brother. Since the 9-year-old boy died last year of cancer, his mother, Kim Jostad, has changed the room a bit.

A new bed next to a New York Yankees rug replaces the bunk bed Ethan Jostad shared with his older brother. Since the 9-year-old boy died last year of cancer, his mother, Kim Jostad, has changed the room a bit.

One thing she hasn't changed is Ethan's side of the closet. T-shirts and jackets still hang next to his brother's clothes.

"We don't open it very much," Jostad said, crying as she looked at her son's clothes in her Eagle Point home.

Ethan died Aug. 8, 2011, at Doernbecher Children's Hospital in Portland from alveolar rhabdomyosarcoma, a rare form of childhood cancer, which begins in the soft tissue and forms tumors in muscles that are attached to bones. He was diagnosed at age 7 with a 15 percent likelihood of survival.

Jostad, 33, who works as a business manager at U.S. Cellular in Medford, said she cries every day. Even after a year, she said, things aren't getting easier.

To continue her son's fight against cancer, Jostad has raised thousands of dollars to fund research for childhood cancer. On July 29, Jostad joined 45 mothers who have had a child with cancer and shaved her head for the third annual "46 Mommas Shave for the Brave" event in Hollywood, Calif. Jostad raised $6,100 for the event, which will be donated to the St. Baldrick's Foundation, a childhood cancer charity.

Shaving her head, she said, made her feel closer to her son, who became bald at age 7.

"He hated cancer," Jostad said, while holding a teddy bear with a "Cancer Sucks" button pinned to it in honor of her son. "We have so many videos of him talking about how he wanted to kill cancer."

One video from 2010 shows then 8-year-old Ethan telling his mother that he prayed every night for someone to find a cure for cancer.

"No more cancer," he said.

The last two years of Ethan's life were largely spent away from his friends and home receiving chemotherapy and radiation treatment at hospitals in the Rogue Valley, Portland and New York City.

Ethan's father, Chris, 36, who was laid off from his job one month before Ethan was diagnosed, stayed home with his son. He took Ethan to hospitals in Portland and New York City and gave him shots every day. He also frequently fed Ethan through a feeding tube when he lost his appetite after chemotherapy.

"We tried to get out of the hospital while in Portland," Chris Jostad said, remembering how Ethan would ask to go to Mexican restaurants, the Oregon Zoo and the Oregon Museum of Science and Industry.

Since losing his son, Chris Jostad said, staying busy has helped him stay strong. He has cared for his 7-year-old daughter and 13-year-old son while his wife is at work. He also is preparing to attend Rogue Community College in Grants Pass in the fall to become a nurse.

"I definitely have those moments where I just completely break down," he said. "I'll see a picture of him, or hear a song, and then I'll just be a mess and break down."

After Ethan was diagnosed in 2009, Kim Jostad created a CaringBridge website for the family and updated it nearly every day, writing about her son. The online journal contains 194 pages, written mostly by her, who said writing about her son was therapeutic.

Kim Jostad wrote about how she missed cleaning up after Ethan when he played with his plastic army figures and hearing him talk to his sister and brother. She wrote how she missed him on his 10th birthday.

"Each year is going to be a new first birthday," she said. "I'm going to experience all these different things that my older son will go through, like his first day of high school, driving — so many firsts that I'm going to miss out on with Ethan."

She and her husband watch videos of Ethan every night. The family's house in Eagle Point is decorated with photos of Ethan. His urn sits below the TV in the living room next to a candle the family lights every night for him.

Although she said she tries to remain positive, Kim Jostad frequently has flashbacks of the last few days her son was alive.

"He asked me what was happening to him," she said, wiping tears from her eyes. "He was so scared. He asked me if he could die from it. I told him 'no.' I never thought that I would outlive my children."

Kim Jostad plans to continue raising funds for the Ethan Jostad Foundation she and her husband founded several weeks after their son died. The nonprofit has organized several annual community events, including a softball tournament, to raise funds for childhood cancer research. The foundation also raises money for families dealing with childhood cancer and provides toys to children who have rhabdomyosarcoma. So far, the foundation has raised about $75,000.

"As a grieving mother, you just have to figure out how to make a difference," Jostad said. "You just don't know how to deal with it."

Raising money for cancer research has become her passion. She said she loves talking about her son and occasionally will look through his belongings, including bags filled with stuffed animals.

She gave several of Ethan's shirts and shoes to his best friend and gave some of Ethan's army figures to his cousin.

But she's held on to most of her son's belongings, including the bunk bed that he used to share with his brother.

Reach University of Oregon reporting intern Josephine Woolington at 541-776-4368 or jwoolington@mailtribune.com