Her son afflicted with tumors, mom fighting for the long term

D.C. visit will be for benefit, with hopes to lobby Congress for research

Jill Wagner knew something wasn’t right when Tucker, her rambunctious 2-year-old, started bumping into things.

“He’d trip over a toy he should have seen, or he’d run into a wall or a chair,” said the 27-year-old Wagner, seated at the dining room table in her family’s country home between Perry and Oskaloosa.

She and her husband, Aaron, figured Tucker, the youngest of their two mile-a-minute boys, needed glasses. But a trip to a Lawrence ophthalmologist prompted quick referrals to several specialists who discovered a golf ball-size brain tumor.

The tumor, they said, was slowly squeezing Tucker’s optic nerve. He didn’t need glasses; he was going blind.

“It’s not a good feeling to go in thinking your son might have poor vision and come out realizing he has a brain tumor,” Wagner said. “It was very frightening.”

That was in June 2003. Since then, Tucker has had four surgeries, during which doctors realized he had two tumors, not one. Both were benign.

“They were considered birth defects,” Wagner said. “He was born with them.”Only one tumor could be removed, so doctors at Children’s Mercy Hospital in Kansas City, Mo., inserted a tube between the remaining tumor and a place above Tucker’s right ear that lets them drain fluid in an effort to keep it from growing.

Because of the tumor, Tucker’s pituitary gland is no longer functional, and he’s lost most of the vision in his left eye.

“He can see shapes and shadows and colors, but that’s about it,” Wagner said, referring to Tucker’s left eye. His right eye was not affected.

Wagner, who graduated from Lawrence High School in 1996 and Washburn University in 2000, said she’s learned a lot in the past 22 months.

Jill Wagner swings her son Tucker, 3, Tuesday morning on their farm near Oskaloosa. Jill will run a race in Washington, Race for Hope, an annual 5K race at Freedom Plaza in Washington, D.C. Tucker was diagnosed with a benign brain tumor, which was removed, but doctors have found a second benign tumor.

“When people hear the words ‘brain tumor,’ they assume you get it taken care of and you go on,” Wagner said. “They don’t realize the long-term effects.”

For the rest of his life, Tucker will be on medications designed to replace the hormones no longer produced by the pituitary gland. He already takes four pills twice a day and gets a shot at bedtime; he has half-day checkups at Children’s Mercy Hospital every six to eight weeks.

“His prognosis is good. The survival rate for this kind of tumor is high,” Wagner said. “But if the tumor were to start growing and putting pressure on the brain, he would have to have surgery again. There’s no such thing as risk-free brain surgery.”Wagner leaves Sunday for Washington, D.C., where she’ll take part in Race for Hope, a fund-raising benefit for the nationalBrain Tumor Society. Afterward, she hopes to lobby Congress for increased funding for research.

“Brain tumor research is underfunded,” said Josh Weinberg, a Race for Hope spokesman. “There’s a lot more that can be done.”

Each year, Weinberg said, more that 200,000 adults and children will be diagnosed with brain tumors.

Wagner said she and her self-employed husband’s health insurance have covered almost all of the costs of Tucker’s surgeries and ongoing care.

“Blue Cross and Blue Shield have been very good to us,” she said. So, too, has Children’s Mercy Hospital.

“Tucker doesn’t mind going there at all,” she said. “He has lots of girlfriends there — he has the nurses wrapped around his little finger.”