Just Competing Is a Sweet Victory for Him

The race winner was nowhere to be seen when Joel Shively finally crossed the finish line Wednesday afternoon. No doubt he was already warming down, shaking hands, soaking up sweet victory like front-runners do.

When Shively made his way through the finish chute--some 10 minutes behind the leaders--the few remaining bystanders offered polite applause and congratulations. But the loudest remark came from a course official.

“That’s the last runner--right?” she shouted to no one in particular.

“Nope,” Shively said, turning toward her with a smile. “There’s one more guy coming in after me.”

Joel Shively admits he gets a boost each time he’s able to outdo another runner. It reminds the Orange Lutheran freshman of how much stronger he’s getting. Reminds him that the cancer that once ravaged his body no longer controls his life.

Two and a half years ago, doctors told Shively and his parents that Shively had developed rhabdomyosarcoma, a highly malignant muscle tumor, within the sinus cavities behind his right eye. At first the family hoped the bump in the boy’s eye was only a sty. But a biopsy revealed cancer.

Shively, who just days earlier had celebrated his 12th birthday, listened quietly as the doctor told him the tumor was already dangerously close to his brain. It was likely to spread. The prognosis was not good.

The chemotherapy started almost immediately. High-powered drugs were administered in three-, four- and five-day cycles. So as not to continually traumatize the boy’s arms with hypodermic needles, doctors inserted in Shively’s chest a small, plastic receptor--and tubing running from it to the heart--so blood could be drawn and drugs administered more quickly and easily.

The side effects were miserable. Shively developed ulcers in his esophagus. He was plagued with high fevers and long-lasting colds. When he woke up in the morning, his pillow would be covered with hair. Later, he pulled it out in tufts. The nausea wracked his body. His weight dropped from 95 to 75 pounds. One of the drugs doctors initially gave him to combat the nausea made him sleepy, but he felt much worse when he awoke. Another made his jaw lock up and his tongue go into spasms. Finally, a new drug helped bring his nausea to more bearable levels.

Radiation therapy followed, as did a blur of blood tests, brain scans and magnetic resonance imaging tests. For one test, Shively had to fill up on Milk of Magnesia and undergo enemas so doctors would be able to see if the cancer had spread to his digestive system. Because the tumor was bumping against Shively’s right eye, forcing the eye to protrude and his vision to be blurred, doctors performed a 12-hour operation on the bones around Shively’s orbital region. More chemotherapy followed.

Cancer, or any potentially fatal disease, is something you hope never to see associated with any child. But cancer affects one in every 1,000 people under 21. You don’t expect it. But it happens. And if it does, you simply hope for the best. That was the attitude taken by a sixth-grade, freckled-faced soccer star when doctors told him he might not have many more years to live.

It has been nearly three months since Shively’s doctor--Robert Chilcote, director of pediatric oncology and hematology at the City of Hope--said the words that now roll off Shively’s tongue: “100% remission.” Certainly, there are no guarantees, as Shively understands. Chilcote describes his patient as a success story, as a boy who has beaten the odds and is ready to go on with his life. But he also knows, as does Shively, that the tiny bit of mass still showing up in the afflicted area may or may not be simply scar tissue.

To this, Shively shrugs and sticks to his well-developed sense of humor. He talks to his coaches about his hospital visits as if they were a great adventure. He talks about the “zillions” of transfusions he has had. He says the doctors “first gave me tons of medicine but later mellowed out.” Last year, for Halloween, Shively painted his very prominent forehead scar red and had a friend chase him around with a fake ax.

Throughout his ordeal, Shively stayed in school, at least as much as he could, making up his classwork during the summers. He had to give up family backpacking trips, baseball and his favorite sport, soccer. He kept up with his baseball card collection--he has nearly 3,000 cards -- and became an ace at weekday TV game shows such as “The Price is Right.”

“Yeah,” Shively says. “I know Bob Barker and all his beauties.”

While he was limited physically, he kept his creative side on full speed. He designed a Christmas card for Kids Cancer Connection, an Irvine-based cancer support organization. His design--featuring a penguin with the greeting “Have a Cool Yule”--has resulted in almost 150,000 cards sold. His latest design--a penguin using candy canes for skis--includes the greeting, “Wisshhing You A Joyous Holiday.”

Shively says through his ordeal, he almost always managed to keep a positive attitude--”I just wouldn’t let myself think ‘dying,’ he said”--but sometimes he can’t help but think what might have been. It’s the same feeling he gets when he visits his friend Mike, a 5-year-old cancer patient now going through chemotherapy. “Nine years ago, without modern medicine, I would have perished . . . deceased . . . no more Joel,” he says. “It is kind of scary.”

But he does the best he can. It might mean taking 30 minutes or more to complete a three-mile cross-country course. It might mean coming in last, or even getting lost on the way. Shively doesn’t care.

Just as long as he’s part of the race.

Barbie Ludovise’s column appears Wednesday, Friday and Sunday. Readers may reach Ludovise by writing her at The Times Orange County Edition, 1375 Sunflower Ave., Costa Mesa, 92626, or by calling (714) 966-5847.