Cancer patients, caregivers describe Hope Lodge as saving grace
- on May 27, 2012
Editor's Note: This is the second in a three-part series about Relay For Life of Douglas County, a benefit for the American Cancer Society. Today: Services and programs.
KANSAS CITY, MO. — Deborah O’Dell, of Pittsburg, was biding time while her 27-year-old son James slept in their room. He has Non-Hodgkin’s lymphoma, and it’s terminal. He’s participating in a clinical trial at Kansas University Cancer Center.
Before the 2009 diagnosis, O’Dell said her son was attending college and working full-time. He weighed a healthy 180 pounds.
Since then, he has endured chemotherapy and radiation treatments and a stem cell transplant. He was in remission for about a year, then the cancer returned with a vengeance. James has lost his job and private health insurance and is on Medicaid.
O’Dell said the cancer had taken a toll on her son emotionally and physically. He now weighs about 135 pounds.
“He ate a fourth of an apple last night and it was like ‘woo hoo,’ a big thing,” she said.
In early May, they were staying in Hope Lodge, a three-story red brick building in downtown Kansas City that is available to cancer patients for free through the American Cancer Society.
O’Dell and her son had been there for four days. She expected they would be there for another five. The clinical trial includes an injection of drugs and a lot of lab work. Some days, they are at KU Cancer Center longer than others. She said her son wouldn’t be able to endure the 250 miles of daily round-trip travel between Pittsburg and Kansas City.
O’Dell, a licensed practical nurse, and her husband also have two daughters, ages 26 and 25. She said Hope Lodge allows her to spend money on her son’s needs instead of on a hotel room.
“I don’t know what I would do without this place,” O’Dell said. “It means the world. I’ve got the comforts of home. I can do laundry and I can cook for him. I’ve bought so much food that I think I’m going to have to give a bunch of it away because he won’t eat it.”
Hope Lodge is just one of the dozens of services and programs that the American Cancer Society provides for free to cancer patients and their families.
Jill Sittenauer, regional communications director for the American Cancer Society, said the nonprofit spends 32 percent of its budget on research, 30 percent on patient services and 18 percent on programs. The majority of that money is raised through Relay For Life events.
“If patients call and need these things, then we do everything we can to help them,” Sittenauer said. “Cancer, unfortunately, is a very expensive disease to get and if your insurance isn’t able to pay for a lot of it or if you don’t have insurance, you have other needs besides your cancer treatments.”
She said one of the services that the American Cancer Society provides is a patient navigator who will not only help patients find cancer services, but also find resources to help with things like utility bills, rent and groceries. When patients call 1-800-227-2345, they will be assigned a patient navigator who will have access to national, regional and local services. The navigator will do the work for the patient.
“We strongly encourage people to use the number,” Sittenauer said.
Other services and programs include:
• Transportation to treatment facilities.
• Support groups.
• Classes to help patients deal with the cosmetic side effects that can occur during treatment.
• Wigs, turbans, breast prostheses and bras.
• Youth scholarships.
• Youth summer camp.
Last year, the American Cancer Society helped 300 cancer patients in Douglas County, and provided 1,035 services. Seven of those patients stayed in the Kansas City Hope Lodge for a total of 189 days.
Rural Lawrence resident Jeff Miller, 59, and his wife, Janice, checked out of Hope Lodge earlier this month after about a four-week stay. He had received his second autologous stem cell transplant at KU to help fight multiple myeloma, a cancer of the plasma cells in bone marrow.
Miller said he needed to be within 30 minutes of KU during the transplant.
“Thankfully, Hope Lodge was available, and it’s a tremendous facility,” he said.
There are 31 Hope Lodges throughout the country, including the one in Kansas City, Mo., at 1120 Pa. It can accommodate up to 100 people and has four floors. There are 45 private rooms that have your typical items: bed, chair, tables, small television, DVD player, closet, bathroom and small refrigerator. The building also has two kitchens, three visiting rooms, three laundry rooms, a fitness room and a courtyard. Patients receive a key and can come and go as they please. They can keep food in the pantries and use the kitchen; everything is done on an honor system. There’s also a movie room with theater seating, a popcorn machine and shelves of movies. Hope Lodge offers activities such as Bingo, crafts, movie nights and scavenger hunts.
It is staffed and locked 24 hours a day. The goal is to keep it a clean and safe environment.
Rachel Miller, Kansas City Hope Lodge operations specialist, said patients typically stay between six and eight weeks, but someone has stayed for as long as 18 months. She said people of any income level can access the lodge. The criteria is that they need to be cancer patients who live at least 40 miles away and who are undergoing treatment.
“We have people who have come from money, and we have people who have come from no money, and that’s the good thing about the American Cancer Society because we treat everyone the same no matter what type of background they come from,” she said.
It takes $1,000 a day to keep the doors open. The lodge has served 2,387 patients since opening in 2000, including 41 from Douglas County.
Jeff Miller not only stayed at Hope Lodge this year, but he also used it last year during his first transplant. That stay was about six weeks, and he and his wife became close friends with a handful of other couples. He said they would have dinner together nearly every day.
“We had conversations about our experiences and also shared different things about our families and so forth,” he said. “That was a good thing to be able to develop those relationships and have that camaraderie.”
Nancy Gosling described Hope Lodge as a godsend as she made oatmeal one morning while her husband, Phil, looked on.
“Everybody is so nice and kind. You form friendships with people who are going through what you are going through,” she said.
The couple are from Goff, which is about 50 miles north of Topeka and 118 miles from Kansas City. Phil, 70, was undergoing chemotherapy and radiation treatments at KU for squamous cell carcinoma, a skin cancer that started in his sinuses one and a half years ago. He already had endured three surgeries and treatments, and now the cancer is back again. The Goslings anticipated their stay in Kansas City would be another 10 days. Then, his treatments would be less frequent and they planned to drive back and forth.
“This is just a blessing. It is unbelievable,” Nancy Gosling said. “We didn’t know anything about it until our doctor told us it was available.”
Tomorrow: A look at the research that Relay For Life helps fund.
SERVICES PROVIDED FOR DOUGLAS COUNTY PATIENTS
The American Cancer Society helped 300 cancer patients in Douglas County in 2011 and provided 1,035 services. Here’s how some of the patients were helped:
• 3 — received a total of seven breast prostheses.
• 26 — received wigs.
• 2 — attended Camp Hope near Claflin in western Kansas.
• 2 — received a free hotel stay near their treatment.
• 7 — stayed at Hope Lodge for a total of 189 days.
• 32 — attended “I Can Cope” education classes.
• 29 — attended “Look Good…Feel Better” classes to help deal with the cosmetic side effects that can occur during treatments.
• 14 — received a gas card for transportation to get to treatments.
HOW A $100 DONATION CAN HELP
Each participant in Relay For Life is asked to raise at least $100 for the American Cancer Society. Here’s what that $100 can provide:
• One night’s free lodging at Hope Lodge in Kansas City for a cancer patient and his or her caregiver.
• Provide two cancer patients with a $50 gas card so they can travel to their treatments.
• Provide two breast cancer patients with a volunteer visit through the Reach to Recovery program.
• Train 10 people to become volunteer drivers for the Road to Recover program so they can transport patients to and from treatments.
• Provide 10 cancer patients with personal health manager packets to help them organize information about appointments, treatments and medications.
• Provide cancer researchers with 115 Petri dishes allowing them to turn theories into new tests and treatments.
Relay For Life of Douglas County will be from 7 p.m. June 8 to 7 a.m. June 9 at Free State High School's track.
The event is free and open to the public. Here's the lineup of activities:
• 5:30 p.m. June 8 — Children's activities area opens.
• 6:45 p.m. — Presentation of Colors.
• 7 p.m. — Opening ceremony and survivor's lap.
• 9:15 p.m. — Luminaria ceremony begins. Dr. Rod Barnes, a leukemia survivor, will be the keynote speaker.
• 5:30 a.m. — Closing ceremony begins.
To make a donation to Relay For Life of Douglas County, visit relayforlife.org/douglasks or make a donation at the event. This year's goal is to raise $175,000.