Trouble talking with your child about cancer? Sanford CLIMB can help

FARGO — Like most kids would, 9-year-old Piper Schmidt got scared at first when she heard her dad had cancer.

The news came in 2019, when Ben Schmidt had a skin growth on his scalp that turned out to be melanoma.

Since then he’s had several surgeries as the cancer has popped up in other areas of his body.

“When you're a kid your mind wanders, so you might get freaked out,” Piper said.

Having Piper, youngest daughter Sloan, Ben and his wife Leslie all attend a program at Sanford Roger Maris Cancer Center, one of several such programs in the community, has made the cancer journey easier.

“It was helping me get to know more about it, but fun at the same time,” Piper said.

The CLIMB program, which stands for Children’s Lives Include Moments of Bravery, is a free, grant-funded support program for children and teens who have a close family member with cancer.

Children are grouped together by age and in some cases, by the type of cancer affecting their loved one. Child life specialists guide them through activities, crafts and age-appropriate explanations of certain aspects of cancer.

Meanwhile, the children’s parents or caregivers work with a psychologist and behavioral health therapist about how they can better navigate the cancer journey with their families.

Wendy Iwerks, lead child life specialist at Sanford Roger Maris Cancer Center, said the facility surveyed adult patients a while back about what was missing from cancer care and the results were clear.

“They didn’t know how to talk to their kids about cancer,” Iwerks said, which prompted the startup of CLIMB.

The program is open to any family in the community with a parent or caregiver who has cancer.

It’s best when the children involved are between ages 6 and 18, and when the family has had a little time to adjust to the cancer diagnosis, Iwerks said.

Participants meet once a week for six weeks, up to two hours at a time at Sanford Roger Maris Cancer Center. Meals and snacks are provided.

Children may get a tour of certain treatment rooms to help dispel fears, or might work on craft projects, such as making bracelets that they and a parent can wear at the same time while undergoing treatment.

Cancer is talked about in age-appropriate terms.

For the younger children, Iwerks likes to explain normal blood using corn syrup as plasma, red hot candies as red blood cells, white chocolate chips as white blood cells and sprinkles as platelets. Tossing in raisins represents cells that are dividing into cancer cells.

During the CLIMB program, they also focus on three C’s; you didn’t cause your parent’s cancer, you can’t catch it from them and that cancer can be cured.

Iwerks said the key is to communicate honestly, take time to answer children’s questions and prepare them for certain things, such as that treatment might cause them to lose their hair.

“When kids aren't told what's going on, they often formulate their own ideas in their head, which can often be much worse than what reality is,” Iwerks said.

Sloan Schmidt, age 6, is just starting to understand what her dad is going through.

Older sister Piper talks to close friends about it, but doesn’t say much to others because she doesn’t want anyone to worry.

David Samson/The Forum

After the melanoma scare, things were fine for their dad for a while until he developed swelling behind his left ear. That turned out to be Stage 3 cancer, which was surgically removed.

Ben, 41, received radiation to that area and started immunotherapy — a once a month infusion treatment designed to keep the cancer at bay.

More time went by and a routine scan found tiny specks on Ben’s lungs, which were Stage 4 cancer.

Doctors changed him from a single agent to a double agent immunotherapy.

Then a tiny spot showed up on his small intestine last fall, which required a third surgery.

Ben gets scans every three months as a precaution and is continuing with the monthly infusions, which his wife Leslie attends with him.

She said they make sure to use specific terms about Ben’s cancer and treatment.

They say “immunotherapy” instead of “medicine” so their daughters don’t get confused when they have to take over-the-counter medications.

“It’s just those little things you learn, too… something you never thought you'd have to worry about when you're raising young kids,” Leslie said.

Regardless of the kind of cancer someone is dealing with, Ben said there’s a feeling of togetherness and optimism.

The family is even seeking donations for melanoma research and hosting a gala fundraiser in May.

“At some point, someone's going to crack the code to all of it,” Ben said, referring to new treatments on the horizon, boosted by research.

For more information about the Sanford Roger Maris Cancer Center CLIMB program, call 701-234-7463.