Chapel Hill mother helps other families of children with cancer

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The last thing Elise Herman remembers saying before her family’s life changed forever was as she and her husband were walking through the lobby of N.C. Children’s Hospital. She saw a young girl with no hair after cancer treatment. “I told Justin how lucky we were not to have a child with cancer,” Herman recalls.

Then, 20 minutes later, the rheumatologist told Herman and her husband, Justin, the results of the MRI he had ordered for their 2-year-old son, Cooper. For two months she had been dogging doctors for a reason behind Cooper’s complaints of “a little neck pain.”

“When he told us,” Herman recalls, “he said, ‘I’ve never really had to tell parents this before, but your son has a brain tumor.'”

Thus commenced the odyssey that led to Elise Herman of Chapel Hill being named one of four North Carolina semifinalists in the 2011 Energizer Keep Going Hall of Fame, a national program that celebrates everyday people who persevere and use their determination to make a difference.

Life changes quickly

On Aug. 20, 2009, Cooper was admitted to Duke Medical Center for his first surgery, which lasted 13 hours. He was in the Pediatric Intensive Care Unit for a month and in and out of the hospital for three months. That was when Herman started living in the moment, she recalls with brown eyes sparkling.

“She hit the ground running,” says Jennifer Thompson, a neighbor. “Her mother died of ovarian cancer a few years ago and she learned how to ask the questions,” of doctors to be a good advocate.

Cooper has now spent most of his life in hospitals through nine major surgeries, seven rounds of radiation and, currently, a new form of chemotherapy administered directly into the brain five days a week, every other week.

It’s the road the Hermans take to keep those precious days coming.

But Cooper is not their only child. Grace, now 7, embodies her name with her acceptance of the disruption of her own childhood.

“She’s amazing with Cooper. She struggles with not being able to do a lot together any-more – and every time Cooper goes into the hospital,” Herman says. “All the siblings of kids with cancer change.”

Herman recognizes how fortunate her family is, that she and Justin both have jobs with good insurance benefits and a knowledgeable, supportive cadre of friends, mostly within their Southern Village neighborhood in Chapel Hill.

Arms of support

In October 2009, Herman and Cooper “moved” to Boston for treatment that Cooper couldn’t get in the Triangle. Cooper had just undergone a craniotomy and could not travel on a commercial airliner, but Children’s Flight of Hope based in Cary transported them.

In Boston, the best hotel rate they could find for a room close to the hospital was $200 per day, until Herman learned about Christopher’s Haven, which provides apartments for families of children who receive cancer treatment at Boston’s MassGeneral Hospital for Children. There she paid $30 a day, and it was far more comfortable, especially when Justin and Grace were able to visit.

Giving back and forward

Herman shared with her friends that she wanted to do something to help the other families, the ones she saw sleeping in hospital hallways, the mother who never ate, those who lost jobs because of the difficult choice parents face – go to work or stay by their child’s side.

Super Cooper’s Little Red Wagon Foundation began after the Hermans and a group of 15 neighbors decided that the best way to make a difference for others was to support the systems already in place, like those that had helped the Hermans.

“Elise is the inspiration but she also keeps things going,” Thompson says. “She’s always looking outside for ways to help people who don’t have what they have.”

Fundraising started with sales of Carolina-blue wristbands engraved with “Cooper,” providing funds to launch the Rockin’ Run and Family Fun Event held Sept. 18, 2010, in Southern Village. Only 300 runners registered, but more than 600 showed up, raising $55,000 in one action-packed day.

In March, Eric Montross, a former UNC basketball champion, kicked off PJ Day at Scroggs Elementary School where Grace is a first-grader. “He came to school wearing pajamas. Cooper went – everybody knows Cooper – the principal, teachers, kids, everybody wore PJs,” Herman says. “The student council went around to each classroom with pillowcases to collect a freewill donation and collected $3,100!”

Cooper’s illness “puts everything in perspective,” Herman says. “Enjoy the day you have. It can change in the blink of an eye.”  n

Valarie Schwartz is a freelance writer and author of Remembering Chapel Hill: The 20th Century As We Lived It.

Super Cooper’s little red wagon

In 2010, funds raised provided the following:

* Children’s Flight of Hope – Cost of two flights

* Christopher’s Haven – 200 days of accommodations

* Tanner Seebaum Foundation – $5,000 for research

* UNC and Duke Hospitals – 30 $25 gift cards for families

Learn more at www.supercooperswagon.org.

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