'A safe environment for people to ask questions'

LARIMORE, N.D. -- Ellen Gregoire's kindergarten classmates knew the 5-year-old had been really sick over the summer. So, when the girl with blue eyes and a sprinkling of freckles across her nose started school this fall, her peers had questions: Will she get better? Why did she lose her hair? Why did she get cancer?

Such questions can be overwhelming and awkward in a school setting. To help ease Ellen's transition, staff from Fargo's MeritCare Children's Hospital traveled to talk with her classmates and the classmates of her two older brothers.

Called the school re-entry program, it is designed to help children get back to the business of being a kid after being diagnosed with a serious illness or after suffering a life-altering injury.

Students who deal with these experiences often are afraid to walk through the school doors, said Marcia Stubstad, a MeritCare pediatric oncology nurse. They know they've been talked about. They need the support of their friends but worry their classmates might avoid them or treat them differently.

"This makes it OK to be talked about," Stubstad said. "We're creating a safe environment for people to ask questions and for the child to let peers know what he or she needs."

Providing information

Stubstad sits on a classroom floor surrounded by bookcases and a group of wiggly kindergartners.

"Does anybody have a story about being sick or in the hospital?" she asks. Hands shoot up.

Ellen's classmates know their friend has been sick. Doctors diagnosed her with leukemia in June, and the news quickly spread through the small town.

But understanding cancer is difficult for adults, much less for youngsters not yet old enough to read.

"She had owies in her blood," is how one boy in her class describes it.

Within an hour, Stubstad and Wendy Iwerks, a child life specialist at MeritCare, explain leukemia, chemotherapy and side effects in ways 5-year-olds can understand.

They explain that the things that make up Ellen's blood forgot how to do their job. They describe how doctors give the kindergartner medicine to make her cancer go away, but those medicines also make her feel lots of different ways.

"Some days, Ellen's tummy might hurt. She might feel very, very tired," Stubstad says. "Sometimes, the medicines might make her very hungry or very cranky."

Throughout the entire conversation, Ellen cuddles on father Brian's lap and holds her mother Ann's hand. Ann is a longtime Herald employee, while Brian works at the Human Nutrition Center at UND. The family lives in rural Larimore.

On a stuffed doll named Erin, the nurse shows students that Ellen has a port catheter inserted under her skin that lets them take out blood and put in medicine without using a needle to poke a vein.

"Maybe if you're playing ball, it might hit her port and she'll say 'ouch,' but you'll never notice it otherwise," Stubstad tells the kids.

Tapping

the experts

Each year, about 15 similar meetings are held in schools across the region. The MeritCare team reassures classmates that diseases such as cancer aren't contagious. If the disease is terminal, they talk about that.

Determined to be honest and direct, the team addresses rumors and misinformation. Team members give classmates and friends ideas of things they can do for the child who is sick.

"We want to take an 'oh, no' and turn it into an 'ah-hah' moment," Iwerks said. "We want to give schools the tools to help a child feel as normal as possible."

In Ellen's case, there are no longer any signs of cancer cells in her blood. The MeritCare team tells her classmates that Ellen is getting better and will grow up to someday be a nurse, a teacher or a veterinarian.

But because childhood cancer can be sneaky, she'll undergo treatments for the next three years. As a result, there may be times she misses school because she's in the hospital, an experience she knows too well.

"When I started the cancer, I had to go to the hospital a lot for fevers," the kindergartner tells her classmates.

Iwerks reassures the kids that Ellen is still the same person she was before she was sick. The 5-year-old can go to birthday parties as long as she's feeling well. She can run on the playground, although some days she might not be as fast as she used to be.

"What else does Ellen like to do?" Iwerks asks.

The children pipe in: She likes to chase. She likes to play with the girls. She likes horses and school.

"When you get cancer, that doesn't change any of that," Iwerks says.

When Ellen's not at school, her peers can send cards or draw pictures to make her feel better, Iwerks says. When she comes back, her friends should ask her to play or ask to be her partner.

Stubstad explains that Ellen's infection fighters are low because of the medicines she needs to take. To help the girl stay healthy, the nurse challenges students to become the best hand washers in Larimore, an assignment the children enthusiastically accept.

And if the students have any questions about cancer or Ellen's treatment, Stubstad encourages them to ask.

"Because who's the smartest person here about cancer?" Stubstad says.

The kids look around the group. Ellen raises her hand and pauses before answering: "Me."

Readers can reach Forum reporter Erin Hemme Froslie at (701) 241-5534