Kids with cancer

Kaylee Bennett doesn't understand what's happening when doctors prepare her for a body scan at Sacred Heart Children's Hospital, says her mother, Sara.

But then, it's difficult to explain to a 3-year-old how an imaging test checks the progress of cancer.

"Kaylee just knows when she goes to the doctor, she comes home with an owie on her hand," Sara said, referring to the IV.

The scans, which make Kaylee sick for days, are just part of the family's lifestyle since she was diagnosed with neuroblastoma at just a month old, said her grandmother, Carol Kelly.

So are lengthy surgeries, and keeping Kaylee isolated to avoid illness that could delay treatment.

"She can't go to child care. One of us has to baby-sit her and if we're sick we can't come, because her scans are more important," Kelly said. "You ask what it's like to have a kid with cancer, and that's it."

So many people don't understand what it's like to have a child with cancer, she added.

In light of September being National Childhood Cancer Awareness Month, families like hers are trying to educate others on what that life is like.

"Some kids don't know they have it until later in life. Some can wait until the tumor goes away on it's own," Kelly said. "We weren't so lucky."

Childhood cancer strikes about 1 of 300 adolescents under 18, said Judy Felgenhauer, medical director for the pediatric hematology/oncology unit at Sacred Heart Children's Hospital in Spokane.

"I think people don't realize how common it is," Felgenhauer said. "Even if someone isn't working in this field, they have some connection to a child who has childhood cancer."

About 40 percent of cases seen in childhood cancer are from brain tumors, she said. Thirty percent are leukemia, and the rest are tumors that strike anywhere in the body.

For some cancers like leukemia, the survival rate can be up to 80 percent, Felgenhauer said. But for some cancers strictly found in children, like neuroblastoma, the stats aren't as promising.

"For low-risk kids, they don't do anything and the cancer seems to go away," she said. "For high risk, unfortunately, with very intensive treatment, there's maybe a 50 percent survival."

Treatment ranges from surgically removing tumors to chemotherapy to radiation therapy, she said.

That can call for lengthy hospital stays, and post-treatment scans that stretch into years.

"On the whole, kids are incredibly resilient. They tend to do very well through treatment," Felgenhauer said. "Children will adjust very quickly to a new normal, if you will. Parents will remark this is all they (their kids) can remember, but they have nothing to compare it to."

But the effect on the overall family can be intense, said Mary Anne Ruddis, executive director of Candlelighters of the Inland Northwest.

The nonprofit, which has an office in the Spokane Sacred Heart hospital, provides families across the region with services like gas and grocery vouchers, gifts, support groups and places to stay during their children's cancer treatment.

"It does affect the entire family," Ruddis said.

Her nonprofit has seen parents quit jobs to support children through treatment, and families divided during that time.

"When your child is diagnosed, it completely rocks your world," said Ruddis, who has lost two children to cancer. "It changes everything from that day forward. All you are concerned about is making sure your child gets the best care they can get."

The hardest part of watching his son's treatment is the side effects, said Dr. Brian Snyders of Coeur d'Alene, whose 1-year-old Emmett was diagnosed with neuroblastoma earlier this year.

Now finishing his sixth of eight rounds of chemotherapy, Emmett is still smiling, Brian said.

There is still hope his tumor will shrink so it can be surgically removed.

"It's been really tough," Snyders admitted. "Just watching his health kind of deteriorate, and losing his hair and being sick and cranky after chemo. It's been hard to watch him go through that."

What has helped the Snyders family through, Brian said, is the rampant community support.

"We've had radio stations, restaurants, car dealerships donate to our son's trust," he said. "That helps us cope, knowing that a lot of people out there are praying for us and supporting him financially and spiritually."

He wanted to alert parents that some children are born with cancer, and others develop it later.

He suggested being vigilant of kids' health problems, he said.

"Once you've received the diagnosis your child has cancer and it's very serious, potentially life threatening ... Once you get over the devastation, you look at the positives in our lives," he said. "That's been the biggest change that's occurred. We look at life totally differently now."

Sandpoint resident Kristine Cordle's life has changed, too, recently.

After a year-long battle with neuroblastoma, her 2-year-old son, Tyler, passed away last month.

"You always ask yourself, 'Why my child? Why wasn't he allowed to grow up and have a normal life?'" she said. "But those questions kind of hinder getting over it. Or getting through it. You can never get over it."

There were so many ups and downs after doctors initially discovered the boy had several tumors, she said.

Treatments like stem cell transplants and antibody therapy seemed to build up his chances, only to have his neuroblastoma relapse twice.

She got through it by making every moment count, she said. Like taking Tyler to motorcross events, buying him a dirt bike, videotaping every precious second.

"I took close to 1,000 pictures of him in his not even three years of life," she said. "And a lot of video. That's all we have."

Now all those photos and videos are locked away in a fire-proof safe, Kristine added.

"My biggest advice would be to take advantage of every single opportunity with your child," she said.

The general public can help by giving to nonprofits that help children with cancer, said Felgenhauer.

She advised giving to or volunteering with Candlelighters, Wishing Star or the Make-A-Wish Foundation.

Candlelighters will be holding a candlelight vigil for childhood cancer awareness at 6 p.m. on Sept. 18 at Spokane Valley Mission Park.

Sara Bennett will be selling gold ribbons to raise money for Candlelighters all day on Sept. 24 in front of the Coeur d'Alene Super 1.

People would be surprised at how kids can tolerate treatment, Kristine said.

"Those kids at the hospital, they roll with anything they are handed," she said. "I can't imagine going through the pain Tyler went through for so long, and have just the attitude and the happiness he had. They taught me a lot about whining about the littlest things."