Nonprofit to help kids with cancer

New Pediatric Foundation will receive funds from Tour des Chutes

By Markian Hawryluk / The Bulletin / @markianhawryluk

Over a three-and-a-half year period, Pat and Jim Stone made the drive from La Pine to Portland for their son's cancer treatment 60 to 70 times.

Matthew Stone, 18, was diagnosed with acute lymphocytic leukemia in 2005. For the first three months, they traveled to Doernbecher Children's Hospital every week, and while the trips became less frequent, the costs continued to add up.

“To and from Portland, that right there you blow through $50 or more for gas,” Jim Stone said. “Then staying in Portland, there were a few hotels that would give you a discount. We were happy when we could get a hotel room for $70 a night. Then, of course, you have to have food.”

Even though the Stones had good insurance coverage for their family, between the medical cost-sharing and their travel costs, they burned through $45,000 in savings in less than four years.

Now seven years after his treatment, Matthew Stone, who also has Down syndrome, is considered cured of his leukemia. But the Stones are still dealing with the financial impact of his treatment. Instead of enjoying their retirement, Pat Stone has gone back to work in an effort to recoup their lost savings.

“We've kind of had to switch roles due to the financial strain of what his cancer treatment did to our finances,” Pat Stone said. “I am now employed. Jim, being retired, he is the stay-at-home mom.”

The Stones, however, consider themselves fortunate. They had a happy ending to the cancer story and have largely weathered the economic storm. Many other families they met at the hospital were not so lucky.

“You would see families literally torn apart because one spouse had to quit work so they could care for the child,” Jim Stone said. “And you would see them just emotionally, and sometimes mentally I think, just torn apart.”

A recent survey by the American Childhood Cancer Organization, found that six out of 10 families of children with cancer reported spending between $1,000 and $10,000 on non-medical expenses on top of the thousands of dollars in out-of-pocket medical costs for cancer care. Half of the families were left with “considerable” or “severe” debt.

“There is a huge financial burden on families,” said Ruth Hoffman, executive director of the cancer group. “Not only do two-thirds of survivors face lifelong late effects from the treatment that cured their cancer, additionally, the family faces an economic burden that can take decades to recover from as well.”

It's why Tour des Chutes has teamed up with Central Oregon Pediatric Associates to form Pediatric Foundation, the first nonprofit in Central Oregon aimed specifically at helping families of children with cancer with direct financial assistance. The new group plans to start distributing funds to needy families this fall.

Two families

The foundation got its start through two Bend families touched by brain cancer. Jimmy Pantenburg, son of Debbie and Leon Pantenburg, was diagnosed with a gliablastoma in 2008, when he was 13 years old. His younger sister, Mary, was friends at school with Frankie Bonacker, whose father, Gary, had been diagnosed with brain cancer himself in 2003.

“I had never met Gary personally,” Debbie Pantenburg said. “But because Gary had brain cancer and my son had brain cancer, he approached us.”

They chatted mostly about medical procedures and diagnoses, about gliablastomas and malignancies, launching a friendship that lasted well past Jimmy's death in 2009.

Gary Bonacker had urged the Pantenburgs to make use of the St. Charles Cancer Survivorship program, which received funds raised by the Tour des Chutes bike ride, which Bonacker had founded in 2005.

But the St. Charles program is geared toward adults, not children. And Bonacker was surprised to hear from the Pantenburgs how little help there was for Central Oregon families who had to travel to Portland for treatment.

“There was nothing in Central Oregon that was truly helpful,” Pantenburg said. “We as a family weren't expecting it nor were we looking for it. However, in my experience up at the hospital, I saw lots of folks who needed a lot of help.”

The Pantenburgs had sold some assets and took out a home equity loan so that Pantenburg could quit her six-figure-salary job to be with her son. She could see other families at the hospital didn't always have those resources and were frequently struggling to make ends meet.

“I never ran into anybody who expected a handout. I just ran into a lot of people who were struggling,” she said. “And when you've got a child who has a life-threatening illness, what happens to your brain is all that stuff turns off. You don't care what's happening back home, you don't care if the bills pile up, you don't care if you don't answer the emails. All you want is for your child to live and survive.”

Shifting gears

At the same time, Bonacker was thinking about keeping more of the Tour des Chutes money in Central Oregon. Over the Tour's first eight years, the ride raised $600,000 for cancer survivorship programs, split between St. Charles and the Livestrong campaign started by Lance Armstrong.

“We felt we needed Livestrong to get off the ground (in 2005),” said Tour director Leslie Cogswell.

But with the 10th anniversary of the race approaching, Bonacker and the board of directors felt it was time to keep the Tour money local. Tour officials say the move was unrelated to Armstrong's admission that he used performance-enhancing drugs in competition.

“We had thought about that even before the whole Lance thing came out,” she said. “We felt like we had arrived to stand on our own.”

Starting with the 2013 ride, the Tour will shift the dollars once slated for Livestrong to the Pediatric Foundation. The money will be used exclusively to help local families of children with cancer, although the foundation plans to expand to help children with other health needs as they add funding sources.

“There have not been cancer services available for pediatric patients in Central Oregon as an ongoing program,” Bonacker wrote in an email to The Bulletin. “The Tour des Chutes will help provide some of the money for this program. Any illness can rip a family apart and having a child with this disease is no different.”

The foundation aims to help with the non-medical expenses, particularly transportation costs. That could include money for gas, restaurant gift cards, paid lodging, even auto repair or a cord of wood.

“The (goal) is to make this transition a bit easier,” Bonacker said.

Travel costs

According to Doernbecher officials, more than 2,500 children from Central Oregon were treated at the hospital in 2012, including 251 kids with cancer.

“Unfortunately, many of our families that we serve, their greatest stressor is not necessarily the illness that they're facing, even when it is cancer,” said Sarah Power, social work manager for Oregon Health & Science University Hospital and Doernbecher Children's Hospital. “Not only are they coping with their illness, but they're struggling to provide for their basic needs like housing and transportation.”

When families have to travel for care, it not only adds travel costs, it often impacts income. While some families can take paid family medical leave, others must stop working or cut back on hours. The ACCO survey found that 76 percent of families cut back on work in some way, including 38 percent of families in which at least one adult stopped working.

“They're truly having to choose between financial viability and being with their child,” Power said.

The travel often splits families, with one working parent at home with the siblings, while another stays in the hospital with the sick child. They must often maintain two separate households on half the income.

“Many families, when they do come to Doernbecher, because they don't have reliable transportation, may not see their other kids for weeks,” she said. “That's really hard to be torn between the hospital and home.”

The Oregon Health Plan offers low-income families a lodging allowance of $40 per night and a meal allowance of $24 per day if they must travel for medical care. But it's usually not enough to cover the actual costs. The state requires families to pay for the meals and lodging themselves, and then apply for reimbursements. Yet many of those families don't have the cash or even a credit card with which to pay.

Power said Doernbecher now steps in to pay for families' lodging and then files reimbursement claims on their behalf. But the process is cumbersome, adding administrative costs for the hospital to do so.

“Those reimbursement processes have become more and more challenging,” she said. “So our charity dollar expenses have actually gone up, because it's become more expensive to access those dollars.”

Houseguests

Many families stay at the Ronald McDonald House by the hospital, but even that comes at a cost.

“We ask our guests for $20 a night,” said Tom Soma, executive director of Ronald McDonald House Charities of Oregon and southwest Washington. “If they can't pay it, we don't bill them.”

Soma sees firsthand the devastating financial impact a cancer diagnosis can have on families. He recalls the very first family he met when he started working at the house more than 14 years ago.

“They happened to live in Eugene. The 13-year-old boy at the time met me at the door my first day of work. He didn't have one of his legs,” Soma said. “That was a two-year journey that ultimately ended in his death. But it also ended in his family's bankruptcy.”

The family had minimal health coverage, and the father continued to work in a low-paying factory job while the mother stayed with her son. Over the course of two years, they stayed a combined 240 days at the Ronald McDonald House. They hit a cap in their insurance policy and were left with bills in the millions.

“It can be devastating, and it can bankrupt a family,” Soma said. “That is not an uncommon story.”

Families stay an average of seven or eight days at time at the Ronald McDonald House, but the average is misleading. Most return for multiple visits. Others live so far away, it's cheaper for them to stay in Portland than to return home in between visits.

So many families wind up unable to afford their homes that Ronald McDonald House no longer sends mail to families a year after they leave. Soma said that has a cascade effect on the family, taking both the patient and siblings out of their school and out of their support system.

“You create families that are on the move, semi- homeless in some cases. Families are moving in with relatives, moving in with parents, moving in with siblings,” he said. “And then they'll move again when they finally get back on their feet.”

The ACCO survey found that 57 percent of families relied of loans or gifts from families, friends or fundraisers to help pay their bills. About 9 percent of families of children with cancer declared bankruptcy.

Ronald McDonald House Charities recently conducted focus groups with the families they serve in Eugene, La Grande and southern Oregon, asking them where they needed assistance. Families ranked transportation issues among their top five concerns, along with oral health, mental health, obesity prevention and vaccinations.

“That is a minimally expensive, maximally impact opportunity for somebody in your community,” Soma said. “It's doable, it's cost-effective and it's responsive to one of the hurdles faced by the families.”

Pediatric Foundation is still its earliest stages. The organizers wanted to get the word out before this year's ride on July 13. The foundation will also become a contact for businesses and individuals who want to donate money or services to needy families.

Work on the foundation is being done on a volunteer basis, by Bonacker and Pantenburg, along with COPA administrator Wade Miller, retired pediatric oncologist Dr. Archie Bleyer and Dr. Dale Svendsen, the pediatric oncology support doctor at COPA.

But Pantenburg credits Bonacker's energy and drive for making the foundation a reality.

“He never let it go,” she said. “He's been through relapses, seizures. Throughout his own medical setbacks, he continues to think about what else he can do before he dies to help other people. So he pushed this forward to expand the scope of Tour des Chutes to include children.”

Editor's note: This story has been corrected. In the original version, the money donated to cancer survivorship programs by Tour des Chutes was incorrectly stated. The Bulletin regrets the error.

Cancer costs

A survey of families of children with cancer found that many experienced significant financial difficulties during their children's treatment.

Parental work reduction

One parent stopped working 35.2%

One parent cut back on work 19.9%

Two parents stopped working 3%

Two parents cut back on work 5.7%

Other types of reduction 12.9%

Annual out-of-pocket costs

Less than $1,000 32.7%

$1,000 to $5,00034.8%

$5,000 to $10,000 17.4%

More than $10,000 11.9%

Financial problems

No impact 15%

Manageable 38%

Considerable 30%

Severe 15%

Dealing with costs

Cash loan/gifts from family, friends or fundraisers 57%

Savings/Retirement 33%

Public agency 27%

Childhood cancer nonprofit 27%

Credit card advance 15%

Declared bankruptcy 9%

Source: American Childhood Cancer Organization

9th annual Tour des Chutes

What: The ninth annual Tour des Chutes will feature rides of 100, 75, 50, 25 or 7 miles in length. The ride is a celebration of life and cancer survivorship, as well as a remembrance of those who have passed on from this disease.

When: July 13

Where: Will begin and end at High Lakes Elementary School, 2500 N.W. High Lakes Loop, Bend.

Register at: www.tourdeschutes.org. Participation is limited to 1,500 riders.