ELKHART — The splitting headaches and the vomiting last May were the first clues.
Then Isaac Steiner’s mom, Sarah Steiner, did an online search to try to figure out what was ailing the five-year-old, leading to a pair of possibilities — migraines or a brain tumor. She didn’t even want to consider the latter possibility, but just 30 seconds into a CT scan at Elkhart General Hospital in early June — a scant two weeks after the symptoms first appeared — doctors confirmed the worst.
Isaac, who lives with his family north of Goshen in Jefferson Township, was immediately whisked by helicopter to Riley Children’s Hospital in Indianapolis for care and the whirlwind began.
“He was scared, he was really scared,” said Sarah Steiner.
That you want your kids to be healthy and thrive is a given. Still, things happen. You learn over and over as a parent that you can control only so much.
But brain cancer? Isaac’s chief focus, till the headaches and vomiting, had been Star Wars Legos, the Boise State Broncos football team, reading, collecting stuffed animals. How are you supposed to deal with a brain tumor, more technically, desmoplastic medulloblastoma, the malady that struck Isaac?
“It tends to come out of the blue,” Sarah said.
The American Cancer Society expects just 11,210 new cancer diagnoses nationwide this year among children 14 and under, 0.7 percent of new cases expected in all age groups. Furthermore, the group says brain and other nervous system cancers represent 27 percent of all childhood cancers, which would mean just an estimated 3,027 diagnoses in all this year among children of the sort of ailment attacking Isaac.
Rob Steiner, Isaac’s dad and a salesman for Ziggity Systems, a Middlebury company that manufactures equipment for the poultry industry, takes it in stride. Tries to, anyway. He and wife Sarah have two other kids, Jonah, 7, and Eli, who turns 2 next week.
“Bad things happen all the time, so why are we immune to experiencing that?” he said, his head shaved to the skin in solidarity with Isaac, who has only a light fuzz on his head due to ongoing cancer treatments.
Still, it’s not easy, especially when it’s your kid. Isaac started kindergarten this fall at Jefferson Elementary School.
“What we’ve learned in this whole process is cancer is nasty,” said Rob. “It doesn’t discriminate.”
Things reached the bottom over the summer, after Isaac’s tumor was removed and he underwent an extended series of proton radiation treatments over seven weeks at IU Health Bloomington Hospital. The frequency of the proton treatments, meant to kill off cancerous growth at the microscopic level, required Isaac, his mom and Eli to stay in Bloomington.
“Summer was horrible,” Rob said.
Now Isaac faces about a year of chemotherapy, also meant to battle the microscopic cancer remnants. But the treatments, which started Sept. 27, can be done at Memorial Hospital in South Bend and Riley in Indianapolis, which has allowed the Steiners to return to their Jefferson Township home.
Doctors offer an optimistic outlook, and on Wednesday, a group of friends shaved their heads at what they dubbed a Fund Razor for the boy at Belmont Mennonite Church in Elkhart, the Steiners’ church. Each of the participants generated donations from friends, family and others for razing their hair.
“Just wanted to do something,” Gingerich said, as Isaac helped with the hair clipping. “The least we can do is help.”
It’s getting better now, thank goodness.
Isaac got to meet Boise State quarterback Kellen Moore on Sept. 16 in Toledo, Ohio, after watching him lead the Broncos to victory over the University of Toledo. Moore told him “I would always be a bronco,” said Isaac, clambering on his dad’s back at the Fund Razor.
At Wednesday’s head-shaving ceremony, around 80 people showed up and the effort netted around $20,000 to help the Steiners offset the considerable costs related to Isaac’s treatment.
“It’s amazing. It’s just amazing,” Sarah Steiner said. “It’s just humbling, and it shows how much people care about kids.”
Still, brain cancer is no piece of cake.
For now, Isaac tires easily, attending school when he can, and though his parents hope the chemotherapy will beat the disease into remission within a year, the boy will still have to be monitored in the years to come to guard against recurrence.
“We’re going to fight it as hard as we can,” said Sarah.