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Boy Tells How He Won Fight With 'Cansur'

August 05, 1989|DANA PARSONS | Times Staff Writer

In a room filled with toys, games, dolls and kids, the intravenous machines were an ever-present reminder that the matter at hand was serious.

But the message Wednesday in the cancer ward at Childrens Hospital of Orange County was one of optimism and cheer, not of gloomy prognoses for the assembled children, ages 2 to 11, with cancer or blood diseases.

The guest of honor was Jason Gaes, an 11-year-old Minnesota boy who told nine other young cancer patients and some of their relatives about his own successful battle with cancer--a rare form that doctors told him five years ago could kill him within two weeks.

Instead of dying, Jason has hit the kiddie lecture circuit as the result of the book he wrote, "My Book for Kids With Cansur." He was inspired to write it, he said, because a book his teacher had given him about a boy's cancer ended with the child dying.

Jason wanted something with a happier ending, so he put down his thoughts about it in a yellow notebook, which he showed to his parents. They promptly set it down on top of the refrigerator before getting around to reading it that night.

When they did, said his mother, Geralyn, who joined Jason at Childrens Hospital, they were stunned by the poignancy.

A sample from the book, published by Melius & Peterson Publishing Inc. of Aberdeen, S.D.: "Sometimes keymotharupy makes you sick and you throw up. Sometimes you looz your hair from it, but you can wear hats if it bothers you. Mostly kids don't care when your bald. And if they laff or make fun there not very good friends anyway. Some kids think its cool."

The publishers decided to leave the book in the original form in which Jason wrote it, misspellings and all, to maintain its authenticity.

While some of the youngsters who met Jason at Childrens Hospital were too young to understand his message, others were not.

Jeremy Johnson, 11, of Trabuco Canyon, wanted to know what kind of chemotherapy Jason had undergone. When Jason's mother identified the five treatments with their complex medical names, Jeremy nodded knowingly.

Jason, who looked at times during the session like an 11-year-old who would rather be outside playing, yielded most of the speaking chores to his mother. But he told the youngsters, "Even though doctors might say you're not doing well, you've got to keep on trying to beat it."

He also said he plans to become a doctor specializing in child cancer so he can tell patients that he once knew what it was like "being the only bald kid in the whole town."

If he does become a doctor, he may have to look no further than his own book for bedside manner. Another excerpt: "When your bald you dont have to worry about getting shampoo in your eyes when your sick from a treetment you get to stay home from school and when your done having cansur you get to have a big party. . . .

"There are a couple bad parts about having cansur too. There's blood tests. I got used to those so I could go in by myself but if your scared of blood tests have your Mom or Dad cover your eyes. If you can't see the needle it doesn't hurt as much as if your sister pinches you. And you don't cry everytime you get pinched do you?"

Jason's mother, who said family members have crisscrossed the country the last couple years from their Worthington, Minn., home to visit hospitals, said, "Public awareness about cancer is very negative."

With other illnesses or accidents, she said, the word victim is usually reserved for people who die. But people with cancer are often referred to as victims, she said. The publicity surrounding Jason's touring, she said, is an opportunity to let people know about "the tremendous strides being made in treatment and research. If they need any proof of that, it's Jason. If anyone should have died, it was him. He was full of it."

First diagnosed in 1984, Jason had five tumors--in his mouth, stomach, left eye and kidneys. He underwent treatment for two years and has been pronounced free of the disease, according to information provided by the family.

Yet Jason is aware of cancer's deadly potential. Jason, who will be a sixth-grader this year and is one of four Gaes children, included this passage near the end of the book:

"My mother said when me and Tim (his twin brother) was babys in her stumick we liked it in there so good the dr had to give my Mom a shot to make us come out. But now that I'm outside I wouldn't never want to go back. She says going to heaven is probly like that. Once we get there we won't want to come back here.

"We'r just scared about going to heaven because we never been there. You can see your Grandpa again and pretty soon your Mom will be there too."

The Gaes family's visit to Orange County was sponsored by the Ronald McDonald House, a home away from home for young cancer patients. The facility, now under construction, is scheduled to open next year on a site a few blocks from Childrens Hospital.

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