Sister's tribute keeps boy's memory alive Booklet: Jennifer Soth wrote about Josh's illness and the toll it took so he never would be forgotten.

April 21, 1996|By Edward Lee | Edward Lee,SUN STAFF

His bike still sits in the backyard of his mother's Havenwood home in Pasadena, waiting for him to pedal away. His dresser drawers are filled with POGs and water guns, ready to be played with. His miniature dachshund sits on the sofa, pleading for a scratch behind the ears.

All are waiting for Josh Soth, expecting him to pick them up one more time. Sadly, that will never happen again.

A year and a day ago, Josh, 13, died of leukemia after an eight-year battle.

But his memory lives on, thanks in part to a booklet his sister Jennifer, 11, penned about her family's experiences.

"Josh's biggest fear was that he would be forgotten," said his mother, Kathleen, her eyes filled with tears.

"This is his sister's way of him not being forgotten."

Jennifer wrote "My Brother Josh," 14 pages detailing the toll her brother's disease took on the family, including the estrangement of friends, and Josh's deteriorating physical condition.

When Josh was diagnosed with leukemia, Jennifer was 2, too young to comprehend the tragedy that was beginning.

"At that time I didn't understand what this meant," Jennifer wrote of the cancer. "Later, I realized that there was no way out of it."

For the rest of his life, Josh's family would shuttle him to the Johns Hopkins Pediatric Oncology Ward in Baltimore, subjecting his small frame to grueling chemotherapy and returning for monthly checkups.

The cancer would go into remission, Jennifer wrote, but would reappear after a month or two.

In 1992, doctors discovered the leukemia had entered Josh's bone marrow. A bone-marrow transplant failed to slow the disease.

Soon, Josh lost his eyesight and then his appetite.

Last year, doctors told Ms. Soth that they could do no more for her son. Ms. Soth took Josh home, where he died about 11 a.m. April 20, 1995.

But the book is more than just the story of Josh's decline and death. Jennifer, who is a sixth-grader at George Fox Middle School, included the more inspirational aspects of her brother's experience.

For instance, when doctors told Jennifer they would have to place a needle into her bone to determine whether her marrow matched her brother's, she screamed with fright. Josh laughed at her panic and said, "Don't be a baby. Look at what I've been through."

"This gave me strength to be brave," Jennifer wrote.

The book also highlights Josh's desire to be treated like any other child. He attended George Fox when he could and played second base for a Riviera Beach Little League team.

Nick Brescia was Josh's baseball manager for two of the three years he played. Josh tried to be like his teammates, Mr. Brescia said.

"Even when he was sick and he had to get chemotherapy and he'd get nauseous, on the way home he'd tell his mom that he had to change and get over to the baseball fields," Mr. Brescia recalled. "He said the team was counting on him."

Mr. Brescia also remembered Josh's first hit, a single that drove in the game-winning run.

"He was jumping up and down, totally excited," Mr. Brescia said. "We were screaming and yelling, too. We stopped the game and gave him the baseball."

But Josh realized he was different from other children when his hair fell out or when adults avoided him.

Although it has been more than a year since Josh's death, Ms. Soth said she can't bear to change his bedroom or anything else reminding her of her son.

Jennifer said she sorely misses her brother, even fondly recalling the times he would poke fun at her or pull her hair.

In her book, which is circulating in her school, Jennifer includes the poem "Shining Star," which she dedicated to Josh. The poem was written by a camp counselor who knew Josh.

"After he passed away, there's this star outside our house that's out every night," Jennifer said. "If there's just one star out, it's that one. If there are other stars, then that's the one shining brightest.

"That's his star."

Pub Date: 4/21/96

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