'For the love of Brian'
O’Fallon family struggles to cope with cancer
 |
| Brian Ott with his mother Erin in their O'Fallon home. Roy Sykes photo |
ST. CHARLES COUNTY
O’Fallon mom Erin Ott says she has never thought about what life would be like without her son, Brian.
"Life without Brian is not acceptable," Ott said.
Brian, who turned 10 on Sept. 16, has been struggling with cancer since the age of 3. Brian is the youngest of Steve and Erin Ott’s three children. Tony is 20 and Jennifer is 15.
For seven years, Brian’s been surviving juvenile pilocytic astrocytoma, a type of cancer that attacks the brain.
"He’s never been cancer free, but he has had stable periods in the last seven years," Erin Ott said.
They knew something was wrong when Brian started waking up with headaches just before his third birthday, she said.
The problems started escalating rapidly. Soon, Brian couldn’t stand.
"In hours our life changed," she said.
Words like "brave" and "courageous" don’t really fit well on a 10-year-old, even one who has spent his whole life fighting. It’s not necessarily courageous to live the only way you’ve ever known. But in Brian’s case, it could be called miraculous.
"Originally we were given a very poor prognosis," his mother said.
In 2001, after his diagnosis, doctors told the Otts Brian would probably survive for two more weeks. Brian’s dad, Steve, took time off work to spend with his son, and lost his job as a painter.
At first, the Otts paid for Brian’s treatment with private insurance, but they discontinued the coverage because they couldn’t afford the 20 percent copayment, Erin Ott said.
"Even if you start out as one of the affluent people in St. Louis, you wind down financially," she said of medical bills.
The government insurance program Medicaid pays for most of Brian’s treatments, but not all.
The Otts have had to refinance their house five times in order to help pay for their son’s treatment.
"We purchased this house for less than half of what we owe on it now," Erin Ott said.
She said their mortgage has tripled.
Friends and businesses have chipped in to help the Otts stay afloat.
The family received financial help from employees of Paric Corp., an O’Fallon-based builder, who paid two mortgage payments. A family friend, Nancy Birch, whose son Jesse plays baseball with Brian, organized the help.
Erin Ott said they’ve come to depend on the network of families they’ve met and the generosity of the community.
On Sept. 3, Brian had a large tumor removed from his spine at a hospital in Tennessee.
"It had grown to dangerous proportions," his mother said.
Without outside help, she said, the cost of the trip, which saved Brian from paralysis, would have been a much greater hardship.
"Without it we would have found a way, but we would have been further and further in debt," said Erin Ott, a former operations manager for Mercantile Bank. She no longer works outside her home.
"Our lives are back and forth to the hospital," she said.
In 2005, Brian had more than 50 consecutive days of radiation.
During an interview at the Ott home, Brian was lying on the couch, covered up in a Scooby Doo blanket, watching cartoons.
His mom tried to cajole him into smiling for a photographer, but Brian was not in the mood.
Brian initially refused to have the spinal surgery that took them to Tennessee, his mother said.
When asked why he refused, Brian refuses to answer, covering his eyes and freckled cheeks with his hands.
Later, during a phone interview, Brian did answer the question.
"Because I didn’t want to get cut open," Brian said.
Eventually, he decided to get the surgery.
"Because I didn’t want to be paralyzed," Brian said.
Brian now uses a walker to get around.
Brian’s teacher at Rock Creek Elementary School tried to help raise cash to cover costs.
"Mrs. Michelle Cates sent out a wonderful letter to some corporations," Erin Ott said.
Those letters did not bear financial fruit, but that didn’t diminish the family’s gratitude.
Deanne McCullough, principal of Rock Creek, helped students organize a car wash and rummage sale to help pay for the family’s trip to Tennessee.
McCullough said she’s known the Ott family for years, starting when Brian’s older sister, Jennifer, attended the school.
"She was a student here when (Brian) was first diagnosed," McCullough said. "He’s a real special guy to a lot of people here."
The Sept. 6 rummage sale generated enough money to cover the family’s traveling costs, Erin said.
The car wash and resale of donated items, including a wide-screen plasma television, generated about $8,000.
"It was a community effort for this kiddo and his family," McCullough said.
Another organization helping the Otts and other families dealing with cancer is a group called His Kids.
Proceeds from the Augusta Bottoms Beer Festival, scheduled from noon-5 p.m. Oct. 4 in Augusta, will go to His Kids.
Despite help from several sources, including Medicaid, the price of keeping the disease at bay is staggering.
"I don’t want people to think the Medicaid system doesn’t help us," Erin Ott said. "It helps a tremendous amount, but yesterday we got a bill for $53,000."
Without a pause, she continues.
"But you do it all for the love of Brian," Erin Ott said.
Want to help?
Donations to the Ott Family should be addressed to: Brian Ott Family Fund, First National Bank, 2996 Highway K, O’Fallon, MO 63368.
