Kenai Physical Therapy is bringing an international childhood cancer awareness campaign to life in Homer. How can residents get involved?
By joining in on a town-wide scavenger hunt, of course.
In honor of American Childhood Cancer Organization’s Go Gold cancer awareness month, doctors and office staff at KPT painted pictures along with the hashtags #gogold and #KPT on rocks from Homer’s beaches. They then hide the rocks around Homer — in town and on the Spit — for Homerites to discover.
“If people find them they can take a picture of them and post it to KPT’s Facebook page,” said KPT office assistant Amy Drake. “Whoever find the most rocks, we’re going to give out a prize at the end of the month.”
KPT staff hopes that people will look up the hashtags on the rocks and learn more about childhood cancer.
“I feel like the rocks are a stepping stone, if you would, to being aware of the fact that there are so many kids out there with cancer,” Drake said. “You only hear about pink because it’s breast cancer.”
The idea came from KPT owner and physical therapist Anette Avant, whose son Stefan was diagnosed with a brain tumor at the age of 6.
“It’s a very good team building project to paint the rocks together and hide them and to talk about childhood cancer out loud,” Anette said. “Everyone at my office knows Stefan, but they didn’t know him when he was going through his journey. It makes a lot more sense to them now that they see where he’s come from.”
Most people don’t think about childhood cancer until it strikes their family, Anette said. This was true for her as well, until it came to her home.
On Feb. 2, 2010, Stefan woke up with a major headache and was medevaced to Anchorage where doctors worked to remove the pressure on his brain so he could be moved to Seattle. Weak blood vessels in a tumor in the center of his brain had caused a stroke in the then-kindergartner.
“In Seattle, they did surgery to reduce the tumor and he went through rehab to be able to return home,” Anette said. “He was there for three months. Since then, he has had a year and half of chemotherapy, his shunt revised twice, and another surgery to reduce an infection in his throat induced by an oral chemo they tried.”
Stefan’s first surgery affected his short-term memory as well as his vision. After the procedure, he had to work to rebuild functions most people take for granted.
“He lost his short term memory. He had to relearn how to breathe on his own, swallow, eat, the alphabet all over again,” Anette said. He is currently blind in his left eye and has a narrow field of vision in his right eye, so he has to be closely monitored anytime he’s moving around or he could hurt himself or others unintentionally.”
Stefan is now 13 and his journey with cancer is still ongoing — the location of the tumor makes it inoperable.
“It’s in the center of the brain and if they went in to remove it he would most likely lose his vision, more cognition, and the ability to control simple bodily functions such as body temperature, circadian rhythms, hunger versus satiation, those kinds of things,” Anette said.
Though Stefan is not currently receiving treatment, he frequent travels to Seattle and Anchorage for testing so doctors can monitor his vision and the tumor and its effect on Stefan’s quality of life. Since Stefan’s short term memory was affected by his first surgery, he often doesn’t remember the more difficult parts of having cancer, which makes it easier for him to cope.
“He deals very well with things because once an activity is done, five minutes later he can’t remember that it happened. What he does remember is missing school and missing friends, but he doesn’t have much memory of being hooked up to chemo,” Anette said. “He never has a bad day. It doesn’t matter what happens in a day, it’s never bad for him. He’s the most positive kid you’ll ever meet.”
Stefan is not alone in that he deals with side effects from treatment. In the United States, approximately 16,000 children are diagnosed with cancer each year. Two-thirds of the children who survive childhood cancer face chronic side effects from their cancer treatment, with one-quarter of those side effects being severe to life-threatening, according to the American Childhood Cancer Organization’s website.
Before Anette learned this year that September was childhood cancer awareness month from her online support group for mothers with child who have cancer, she did not talk about her family’s journey publicly. By joining the Go Gold campaign, she hopes to change that.
“I’ve never done anything to bring awareness. I’ve always buried my head in the sand and tried to pretend this wasn’t happening. Now I realize that’s not the right thing to do. I’m ready to wake up and speak loudly and boldly. We’re going gold!”
Anette hopes that talking about childhood cancer within the Homer community will help the other find support when crisis strikes.
She has not met another family dealing with childhood cancer within the Homer community and is open to talking with anyone who reaches out.
In addition to the painted rocks hidden around town, KPT is breaching the subject of childhood cancer by posting facts, pictures and inspirational slogans relating to pediatric cancer in their offices. The staff is wearing the color gold on their person, and they even bought team jerseys to celebrate Stefan and Anette.
“It was Anette’s birthday and she didn’t want anything for her birthday so we thought, “How cool it would be to support this cause that she feel so passionate about,” Drake said. “So we made jerseys that say ‘Fight Like Stefan’ on them and we each picked a number and a superhero name.”