Family Fights For 10-Year-Old With Brain Tumor

The Wehr family is fighting a battle on two fronts.

On one front, they’re determined to eradicate what’s left of a brain tumor on 10-year-old Collin Wehr’s brain stem. Over the past two years, he’s undergone multiple surgeries, chemotherapy and radiation, but part of the tumor still remains.

On another front, the Wehrs are juggling the paperwork, phone calls and stress of dozens of insurance claims for Collin’s care with the everyday demands of running their household and paying the regular bills.  

“It’s a completely different world for us,” said Ray Wehr, Collin’s father.

Fortunately, the Wehrs are not fighting the battle alone. Although they declined offers of financial help at first, eventually the monetary burden became too great. In June, family friends Robin Bear and Linda Goldsher opened their pocketbooks and went to the bank to start a fund for the Northbrook family. They’ve raised $20,000 so far and hope to raise more than $200,000 to cover the Wehr’s estimated medical bills. Their effort is just one gesture in an outpouring of help and support the Wehrs have received from friends and neighbors.

“We’re blown away by the impact that Collin has had on folks,” Ray said.

Headaches, Flu-Like Symptoms Turn Out To Be A Brain Tumor

In the fall and winter of 2009, Collin began having headaches, throwing up and feeling tired often.

“We thought it was the flu,” said Ray. He and his wife, Joan, took Collin to the doctor, but no one could figure out what was wrong with their son. Then a third-grader at Grove School, Collin was a “sports nut” who had been a perfectly healthy 9-year-old boy.

After months without an answer, the Wehrs eventually took Collin to Children’s Memorial Hospital in January 2010. A doctor examined the pressure building up in his optic nerves. 

“Within 10 minutes we got an answer,” said Ray.

Doctors did an MRI and discovered that a medulloblastoma—a malignant tumor wrapped around the lower part of Collin’s brain—was causing the pressure behind his eyes. According to the National Institute of Health, medulloblastomas are the most common form of brain tumors among children and can spread throughout the brain and spinal cord. But brain tumors are still very rare. On average, 33 children out of every million are diagnosed with a brain tumor each year, according to Children’s Memorial Hospital. 

Treatment Involves Multiple Surgeries, Chemo And Radiation

The very next day, Collin underwent a seven-hour surgery to remove the tumor, which was wrapped around his brain stem inside his cerebellum. Doctors were able to cut out the main part of the tumor, but had to leave behind two small spots because cutting it away entirely was impossible without destroying part of Collin’s brain. 

Collin stayed at Children’s through late March, then went to the Rehabilitation Institute of Chicago, where he remained until late May.

During those four months, Collin underwent two additional surgeries because of complications with his shunt, a thin tube that doctors implanted because cerebrospinal fluid wasn’t draining properly from his brain. He had yet another surgery when doctors discovered that two of his vertebrae had separated, perhaps because the only way he could get comfortable after his first surgery was to tuck his chin into his neck. 

Meanwhile, Ray and Joan took turns spending time in the hospital with Collin and time at home with their older daughter, Ramsey, now a freshman at .

“Basically, we would pass each other when one would come in,” said Ray, who took a partial leave of absence from his job during that time.

Even when he got out of the Rehabilitation Institute, Collin still had more treatment to undergo, in the form of radiation and chemotherapy targeting the parts of the tumor left behind on his brainstem. 

Insurance Company Doles Out Red Tape

While the Wehrs were in and out of the hospital with their son, they also had to make phone calls, fill out paperwork and go through one approval process after another with Aetna, Ray Wehr’s insurance company.

Even getting coverage at all was dicey, he said. Before Collin got sick, the IT company Ray worked for went through a downsizing, and he lost his job. He finally found a new position at Wells Fargo and started there just one week before Collin was diagnosed. So the family had to wait for insurance benefits to kick in. 

At first, the process for getting claims approved was relatively easy. But then Ray said his insurance company began to push back. An Aetna representative told Patch that the company could not comment on specific cases due to federal regulations regarding patient privacy.

After his first surgery, when Collin was having severe pain in his back, Aetna initially denied coverage of the MRI scans doctors needed to diagnose the problem. The Wehrs got a call from a secondary company, to which Aetna had referred the claim, whose representative wondered whether Collin had been in a car accident.

But Collin had not even left the hospital—something that was evident from his medical records, according to Ray.

“They play by their own rules, and you have to understand their rules and tactics,” he said. The Wehrs have learned to appeal denials whenever they can, and have given the Rehabilitation Institute and Children’s Memorial permission to communicate with their insurance company about Collin’s care.

The Wehrs also ran into trouble when a doctor at the Rehabilitation Institute recommended a therapy called Dynasplints. Among other side effects, one of the chemotherapy drugs caused a deadening of nerves in the extremities, primarily around Collin’s ankles. The boy who loved playing baseball and golf was now having trouble simply putting one foot in front of the other. But doctors said that Dynasplints—braces that gradually stretch the joints—would gradually help him regain mobility.

“According to our insurance carrier, that’s experimental,” Ray said—meaning the therapy wouldn’t be covered. 

“We’re like, if that’s experimental, why is the No. 1 rehab hospital in the country using it?” 

Ultimately, Aetna approved the treatment for 90 days. The insurance company declined to cover a wheelchair or walker for Collin, however, according to Ray. 

“They’re just slowly starting to push back more and more, and trying to extend out that payment cycle,” Ray said. 

For now, Ray said, the family’s total out-of-pocket medical expenses are “a moving target."

The Wehrs owe $225,000 alone for the initial surgical bill from Children’s Memorial, he said, but they are working with the hospital to get some financial assistance. Meanwhile, Aetna’s coverage of Collin’s rehabilitation therapy ended last Thursday—and the Wehrs have yet to find out whether the company will approve their appeal for extension.

Robin Bear and Linda Goldsher, among many others, are watching out for the Wehrs, however. The two women started The Collin Wehr Fund (http://www.becauseofcollin.org/) in July, and are planning a fundraiser for October.

“They didn’t ask for a long time,” said Goldsher, who serves on Northbrook’s Community Relations Commission with Ray. 

“When they said they needed help, we knew it was the real thing."

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