10-year-old battling odds, rare brain tumor

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Updated: August 4, 2011 4:20PM

Cautious is the new normal for Kody Stoginski.

The 10-year-old Steger Cub Scout used to run from dawn to dusk, with hardly a care in the world. He’d skateboard, rollerblade and ride his ATV at the park down the block until his mom made him stop.

But all that changed just before Christmas when Kody was diagnosed with an inoperable brain tumor. Now, while he recovers from an experimental treatment — his only hope to outlive a bleak prognosis of 6 to 12 months — his days are spent more passively, under the watchful eyes of his mom, Barb, and his dad, Matt.

He still plays video games and his friends still visit. And he continues his studies through a tutoring program set up by his Eastview Elementary fourth-grade teacher, whose wife is a retired teacher.

But he no longer runs free.

His biggest joy today is the Mustang golf cart his Cub Scout pack recently gave him.

“Me and my dad ride all over the place,” he said.

Kody’s nightmare began with a bad day at school.

“I woke up one morning and didn’t feel good. I told my brother I wasn’t going to school and he pushed me out the door and made me go anyway,” Kody said.

At school, teachers noticed he wasn’t walking straight and he wasn’t talking right. Because Kody said he was tired, they let him take a nap. When he awoke, his symptoms were worse. They called his parents and paramedics.

Barb remembered that Kody had fallen the previous day.

“I thought maybe he had a concussion,” she said.

Kody’s pediatrician sent him to Hope Children’s Hospital in Oak Lawn for a CT scan, which revealed a mass deep in the boy’s brain stem. An MRI confirmed the tumor.

Diffuse Intrinsic Pontine Glioma (DIPG) comes with a devastating pediatric diagnosis, with a median survival time of about nine months. Because the tumor is aggressive and hard to get at, it is difficult to treat.

“We were shocked, just devastated,” Barb said. “Especially when they told us it was inoperable.”

Their biggest hope rests with a procedure called proton therapy, a form of radiation that is more advanced and more precise at zapping its target. Kody also is undergoing drug therapy.

“They had to make a special mask for the radiation,” Kody said. “It holds your head in place.”

Traditional radiation, Barb said, causes a lot of collateral damage.

“The proton beam was the least invasive and potentially most effective of the treatments available to him,” she said.

Offered through a clinical trial conducted by Children’s Memorial Hospital in Chicago, the five-day-a-week, six-week treatment program recently was administered at ProCure Center in Warrenville, the only site in Illinois where the procedures are performed.

Kody was the 25th patient at the center to undergo the treatment, which has proved successful in battling other forms of cancer.

“He was quite the trouper through it all,” Barb said.

Already, Barb sees improvement in her son’s balance and his ability to walk. Only time will tell if Kody will become one of the lucky patients to more fully respond to treatment.

Even if he does, Barb always will be on the lookout for a relapse, which can come fast and furious.

Barb has quit her part-time secretarial job at St. James Hospital to stay home with Kody because he needs constant attention. He still struggles to control his movements, weakness and swallowing, all of which will get progressively worse if the treatment doesn’t work.

“It’s horrible because the kids who have this are aware of what’s happening to them as it happens,” she said.

For their parents, the common enemy becomes the clock.

“I’m always hoping for one more day, one more hour, just more time,” she said.

In her search for information about this rare condition, Barb has found online support groups, which she says are a godsend. Through them, she’s learned that the longest survival time for DIPG has been seven years.

“There seems to be no explanation for how a child gets this or why some respond to treatment and others do not,” she said.

Keeping a public journal at caringbridge.org helps, she said.

Kody’s brothers, Kevin, 16, and Kyle, 13, pitch in to help the youngest family member.

“We try to fill up his time because he has always been a doer, running from morning to night, and now he can’t,” Barb said.

Family and friends are hosting a Kare 4 Kody benefit May 22 at Gaelic Park in Oak Forest. For more information on that or to donate to a special fund established in Kody’s name, visit kare4kody.com.