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Portraits of Courage - Wisconsin State Journal

August 31, 2008  |  Posted by Sandra Kallio

Portraits Of Courage
The Flashes Of Hope Program Links Volunteer Photographers With Families Dealing With An Illness

Wisconsin State Journal :: LIFESTYLE :: G1
Sunday, August 31, 2008
Sandra Kallio
'Big smile, Riley. Excellent!'

Greg Anderson coaxed smiles out of Riley Adkins, 7, about the most activity she seemed able to manage during a Flashes of Hope photography session.

This part of her family's visit to American Family Children's Hospital July 24 was more fun than the other reason they came from Oregon to the Madison hospital: an MRI scan to verify that radiation and chemotherapy were booting the cancer from her system after a surgeon had removed the medullablastoma, a type of brain tumor.

"Want to try some other ones? No, done?" Anderson asked. Thanking the family for the chance to take their photos, he added, "It was a real treat to meet you and your family."

They were among the first group of families visiting the hospital's Positive Image Center that day for free mini-makeovers and free professional photography services, all offered once a month through the Madison chapter of the Cleveland-based Flashes of Hope nonprofit organization. The national program is for seriously ill children and teens, including the 12,000 diagnosed with cancer each year for which the survival rate now is more than 80 percent.

Ready for her moment

Diagnosed in January, Riley had been too sick the previous times the family wanted to join a Flashes of Hope session. Feeling better this time, she wore her favorite brown newsboy cap to the hospital but removed it for the photos with her mom, Kristi Adkins, and her sisters Kaitlyn, 16, and Bailey, 12.

Only Bailey took advantage of the hair-styling service before the shoot. Danielle Kruger of Aniu Spa and Salon in Middleton, who's been volunteering as a stylist with the program for a year, used a curling iron to create waves in Bailey's shoulder-length dark hair.

Riley's illness has been hard for her sisters, especially in the beginning, Adkins said, adding that they now spend a lot of extra time with her. On this day, there was some sibling tension that quickly dissipated.

"Once we got in there and started taking pictures it was fine," Adkins said. "The girls really got into it."

Later in the day, Bailey showed off her curls to her friends. Until chemo led to hair loss, Riley, too, had thick brown hair.

"The hair went in about three weeks," Adkins said, recalling the day Riley woke from a nap on the couch and started running her fingers through her hair as it came out.

"I had a friend come over and shear her hair," Adkins said. Her boyfriend and his son and daughter did the same. "We had four bald people in the house. That was pretty cool. Riley liked that."

Then four teachers and 30 students shaved their heads in an assembly at Oregon High School, one of the benefits staged for Riley. "It got to be a trend in Oregon," Adkins said.

Like Riley, Megan Ketterhagen wore a wig for her school photos but not for the Flashes of Hope photo.

Megan, 14, of Whitewater, kept her bandana on when she posed alone and with her mom, Kris Ketterhagen, and one of her sisters, Ali, 8. Her other sister, Kara, 12, and their dad, Kurt, weren't at the hospital that day.

"I never wear make-up," Megan told Paige Krembs, a first-time volunteer from the Ultimate Spa and Salon in Monona.

"We'll just keep it kind of natural," Krembs promised, commenting on Megan's already beautiful skin. "Can we trade?"

She dabbed on foundation, set it with powder and applied subtle eye make-up to help make Megan's eyes "pop," then turned to Ketterhagen and asked, "What do you think, Mom?"

"You look gorgeous," Ketterhagen told her daughter, who was indeed striking even without the hair that used to reach the middle of her back.

Dealing with change

"Losing my hair really upset me a lot," Megan later said when asked about the most difficult part of her cancer diagnosis and treatment. Diagnosed with osteosarcoma in late April, she had chemotherapy, which would be followed by surgery to remove the growth on her left femur. The Aug. 6 surgery included a total knee replacement because of the location of the cancer, which the surgeon was confident was totally removed, her mother said.

While Megan said her hair is coming back a little now, she doesn't expect that to last during the four additional rounds of chemotherapy she'll undergo before Christmas.

"I kind of just wanted to remember this later," she said, explaining why she had her photo taken at the hospital.

Her mom said, "We went to the Flashes of Hope Web site and checked out the pictures, and they were so well done and they captured some really great expressions. But it was totally her decision. I wanted her to do this, but I wasn't going to force that on her if she wasn't comfortable with it."

Megan would recommend the service to other teens dealing with a serious illness. "It's an important thing that happened to them in their lives and they should be able to remember it and what they looked like. And it's something fun for them to do," she said. "I think it's a really good program and it worked really well for me."

Her family looks forward to receiving a package of two 8-by-10-portraits in a leather portfolio, a set of 4-by-6 proofs and a CD with all the images for making copies as desired. The photographers volunteer their services and the cost of materials, about $25, are covered by donations. All photos are black-and-white and sometimes are touched up.

"The photographers have been very sensitive," said Trudy Brule, a nursing coordinator who on her days off volunteers as the Flashes of Hope Madison chapter director. Photographers, she explained, can avoid showing IV access sites and mitigate skin and weight changes sometimes caused by the illness or medication. Younger children occasionally wear costumes if they're in, say, a princess or pirate mood, but the black-and-white photography shifts the emphasis from clothes to the subjects' expressions and relationships to the family members or hospital staff invited to pose with them. The invitation is not extended right after a diagnosis but somewhat later when the child is feeling more settled and up to the photo session.

While the timing might seem odd for a family portrait, Flashes of Hope volunteer photographer Barry Sherbeck said, "This is real. Family portraits in some imaginary context where there is no hint of worry or concern - those are not as 'real.' "However, the thing that strikes me about the kids and families is their resilience, the determination they have to be fully human and to face their health challenges with boldness," he continued. "I imagine that some might not feel bold at all, even while they still demonstrate a measure of boldness that you can sense in a photograph."

The children and teens feel good about themselves when they see the pictures, said Sandy Bakk, a patient and family advocate at the hospital. The pictures, she said, convince them that "I'm a great-looking kid. I'm attractive."

Allison and Kip Clarke founded Flashes of Hope in Cleveland when their 20-month-old son was undergoing treatment for cancer in 2001. He now is 9 years old and the program has spread to 34 hospitals in 29 cities, including a new program at Children's Hospital of Wisconsin in Milwaukee. Executive director Sondra Miller said 1,750 children had their photos taken through the program in 2007 and she estimates the number will grow to 3,000 in 2008.

Since June 2007, 107 inpatients and outpatients from infants to age 20 have had their photos taken at American Family Children's Hospital. Fifteen have since died.

"Whatever the outcome, it's just a very important keepsake for the family," Bakk said.

Capturing hope

Flashes of Hope relies on the services of volunteer professional photographers - many of whom are award-winners in their field. The Madison chapter has tapped the talents of Greg Anderson, Vance Dovenbarger, Jim Gill, Andy Manis, Jeff Miller, Barry Sherbeck and John Urban of the Madison area and Phil Weston of Oshkosh.

For information on volunteering, contact Madison chapter director Trudy Brule at 513-4006 or tlbrule@terracom.net.

To find chapters in other cities or to donate to the organization, visit www.flashesofhope.org.

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