Cancer patients let Goodtimes roll

They don’t have to explain scars, their activity restrictions or their shortness. They’re not pitied or made fun of. They are around people who understand.

This past week, 78 kids from all over Idaho, Washington and Montana gathered for the American Cancer Society’s annual Camp Goodtimes, held this year at Ross Point in Post Falls.

“Hopefully on the surface it would look like any other camp,” said Judy Felgenhauer, a pediatric oncologist at Sacred Heart Medical Center in Spokane, who has volunteered at the camp since it began 20 years ago.

The 7- to 17-year-olds canoe, toss Frisbees, do arts and crafts, and play volleyball and water basketball until late at night. They bond with counselors and fellow campers. They randomly break into song during mealtimes.

But if you look closer, you might see children with amputations or in wheelchairs. You might notice the Care Cabin, where children still receiving treatment line up to take their medicine. You might glimpse cabins branded with the names of donors who paid for each of the cancer patients and survivors to attend and bring a sibling or friend.

Instead of ignoring or emphasizing their special situation, these campers simply see it as a part of their life.

Ten-year-old Thalon Hansen recited the multi-syllable name of her cancer – “thalama-gangly- oclea-oma brain tumor” (thalamic ganglioglioma) – and proceeded to explain that it was in the right side of her brain, paralyzing her left side. “Even,” she said, “my left nostril!”

Minutes later she jumped into the conga line dancing to the dining hall.

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Unlike adults, who might deal with news of cancer by talking to loved ones, being angry or drawing on their faith, kids usually use play to work through the illness, said Krista Robak, a child life specialist in Sacred Heart’s oncology department.

Robak educates child patients about treatments they’ll undergo, teaches coping techniques, and plays with them so their development isn’t negatively impacted by the hospitalization.

The camp is an ideal place for that normal play because a doctor and two nurses are always on staff, a comfort for parents.

In other settings, the kids might be stereotyped as weak or be coddled by overprotective parents, said Jody Cushner, a volunteer who lost her son to cancer. “They involve themselves more in this atmosphere,” Cushner said, “because they feel this sense of normalcy that has escaped them during their illness.”

Brandon Torres, 9, of Moses Lake, took an afternoon nap in the Care Cabin on Friday, after a busy morning.

During a volleyball game, Brandon served the ball to a Gonzaga basketball player, who volleyed it over net.

Earlier in the week, he climbed three-fourths of the way up the climbing wall, impressing all who heard of the feat, including volunteer counselor Zachary Oliver.

“Even though he’s in a wheelchair, he wants to try things,” Oliver said. “The passion to continue on with his life is what throws me for a loop every time.”

Powerful sights like that abound at Camp Goodtimes.

Stephanie Boucher, 15, and her cabin mates blindfolded themselves as they climbed the wall and as they ate dinner, so they could get a taste of the life of their friend who was blinded by a brain tumor.

“We just wanted to see how she felt and how she did it,” Stephanie said. “I don’t know how she does it.”

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Stephanie, who is from Butte, first attended the camp when she was 9, the summer after she was diagnosed with a cancer in her knee. She sports an impressive scar up her right leg, a remnant of the surgery that replaced her bone with a titanium rod.

Stephanie worried that other campers would stare at her scar, but she came to realize that most everyone had one. “It made me feel a lot better about my cancer,” Stephanie said. “Seeing all the other people made me feel like I could deal with it better.”

That feeling of not being alone is particularly important for children, said Felgenhauer, the oncologist.

“Adolescence is all about conforming,” she said, “and when you get diagnosed with cancer, boy, you stand out.”

People ask Kayla Kohr, 14, why she isn’t up to the level of others in the school band. She had to miss a year of school because of daily hospital visits. “It was sixth grade,” Kayla’s childhood friend, Sammi Gilbert, 16, reminded her. That’s the most important year in band, Kayla added. People also joke about her height, which was stunted by the cancer treatment.

Kayla had the choice to go to another camp but she chose this one because campers understand her experience. “You always have someone to talk to,” she said, “and they know how it feels.”

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Being with people who share the same experience is also important for the siblings of cancer patients and survivors, said Robak, the child life specialist.

They have to deal with the extra attention the sick child receives and the control that the illness has on the family’s life. If the family plans to go to a sibling’s recital, but then the child with cancer develops a fever, the family has to go to the hospital, Robak said. Becoming angry and upset are normal reactions, she added, but a sibling might not know that because they haven’t interacted with other siblings.

“I always hope it’s an opportunity for siblings to connect,” she said, “and to realize that there are other kids out there that are going through the same thing as well.”

Jose Endrina, 10, of Kevin, Mont., came to the camp for the first time this summer with his 11-year-old brother, Ikika. Jose didn’t see him for a year and stayed at a family friend’s house after doctors discovered brain tumors in Ikika three years ago. “One was a golf ball, one was a baseball, one was a grapefruit,” Jose said, explaining the sizes of the tumors.

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Every year, Sammy Smith counts down the days until Camp Goodtimes, which she has attended seven or eight times. Sammy, 14, of Spokane, got leukemia when she was 4 or 5, and relapsed when she was 7. “I’ve been off treatment … I don’t keep track,” Sammy said after thinking for a few seconds. “I don’t really like to keep track.”

Like Kayla, she appreciates the fact that other campers understand. “You don’t have to tell the story over and over again,” Sammy said, or put up with boys making fun of your bald head.

But unlike Kayla, she didn’t bring a friend along this year. In the past, she’s had problems with her pals because of the way they acted at the camp. Some weren’t sensitive. Others were so sensitive that they pitied the cancer campers.

Her message to people who don’t know how to act around cancer patients and survivors is: Treat us normal.

“There are some things certain people can’t do,” Sammy said, “but normal people have that problem, too. We’re not that different.”