Cincinnati Family Magazine

Your # 1 Hometown Family Resource

July 23, 2024

Living with a Serious Illness

When a child is gravely sick, the most redemptive power comes from friends and family who stay involved to stick it through.

Full2377.jpgDo you remember being sick as a kid? You felt cruddy, you had to take disgusting medicine and worst of all, you couldn’t play with your friends. The decadent thrill of staying home from school quickly turned into boredom and longing to hang out with your buddies.

So imagine what it’s like for children with serious illnesses or catastrophic injuries that force them to miss weeks of school only to return with a missing limb, burned skin or a bald head. Their friends haven’t seen them in a while and aren’t sure what to say. Bullies tease them because they look different or appear weak. What should have been a joyful homecoming feels awkward and strange.

The unfortunate truth is that when children become ill, friendships can sometimes deteriorate along with their heath. At a time when they need their friends the most, these kids are often left to fight for their lives – alone.

Janet Cross, director of Child Life Services for the Monroe Carell Jr. Children’s Hospital at Vanderbilt in Nashville, TN explains, “Some children jump in and want to help while others shut down. Young children may think they did something to cause the illness or that they’ll catch it.” She says that, like adults, older kids don’t want to say the wrong thing or upset their friend, so they hold back and say nothing at all. On the other hand Cross says, “Kids can be pretty blunt and say things that are hurtful or ask questions that are uncomfortable,” unwittingly making their classmate feel bad.

But her department works hard to keep sick kids from feeling isolated by sending child life specialists into patients’ schools to talk to their classmates. “One of the most effective things we’ve found is to interact with the schools and provide information about the child,” she explains. Children are generally curious about a friend’s disease, so when they understand it and know what to expect when their classmate returns, they’re typically eager to reconnect and learn even more.

Such was the case with 12-year-old Wes Yates. When Wes was diagnosed with Crohn’s Disease (a chronic disorder that causes inflammation of the digestive tract), he not only told his buddies all about it, he stood up in front of his fifth grade science class and delivered a detailed report about Crohn’s when they were studying the human digestive system.

“They thought it was interesting,” says Wes, “because some kids didn’t know what the intestines are.” Once his peers became familiar with his disease, they backed him 100 percent when he had surgery to remove part of his intestines. “The whole school sent me a card and kids love poking my scars.”

Wes’ sense of humor has been a tremendous asset, too. When kids who don’t know about his ailment ask about the scars on his abdomen, “I tell them I got into a knife fight,” he laughs.

The Importance of Keeping in Touch

While Wes’ health hasn’t been perfect, fortunately, he hasn’t missed much school for treatment. But plenty of children do. That’s why Vanderbilt Children’s Hospital employs a teacher, certified to teach kindergarten through grade 12, so students can keep up with their studies. It’s the only accredited hospital school program in the state.

While it’s great for patients to stay current on their algebra, when they’re hurting and away from home, staying in touch with their pals is even more important. So the hospital has bedside computers with Web cameras in 60 patient rooms, a perk that enables kids to build Web sites, create blogs, email classmates and even video conference with friends, teachers and relatives.

Sometimes though, when the going gets rough, the best person to understand what chemotherapy feels like or how hard it is to miss the prom is another patient. Cross says, “We host several support groups at the hospital like Gilda’s Club (a cancer support group), and our department hosts activities designed to draw kids with a common diagnosis together.” The child life services team recently held a Wheel of Fortune tournament. “Those fun events are the icebreakers to more serious and touching conversations,” she says.

Another way young patients can get to know one another is through Patchworx, an international online community with games, chat rooms and virtual events to help sick kids connect with each other around the world. A young lady named Elle posted this entry on Patchworx: “I can’t even tell you how much it meant to be part of such an amazing organization and to feel so loved and surrounded by people who understood, 100 percent, what was going on and who I didn’t need to explain a thing to – they just knew.”

Knowledge is Power

A loving and ingenious father in Clarksville, TN used the same kind of cutting edge technology that Vanderbilt (Nashville, TN) patients enjoy to allow his daughter to physically attend middle school while she battled bone cancer. Catie Summers was diagnosed with Osteosarcoma (a type cancer that creates tumors inside growing bones) when she was 12-years-old. Her chemotherapy treatments left her with no hair and very few white blood cells, making her body vulnerable to the most common cold or virus. Doctors forbade her to be around other kids, lest she pick up germs that could derail her recovery.

But that didn’t deter her father, Bill, who set up a computer with a Webcam on a rolling cart that Catie’s friends would roll from class to class while Catie sat in front of a duplicate PC/Webcam station in a spare office at the school. Summers says, “Her teachers would hook it up and she could watch the board and listen in. If there was a handout, one of the kids would slide it under the door. Her friends would monkey around in front of the camera. They had a ball. It was amazing.”

What about her bald head? The kids bought her cool scarves like skull and crossbones biker bandanas from Harley Davidson, and her friends eventually visited her at home when she couldn’t be at school. “Once they got past catching up on her treatments, they wouldn’t dwell on it. They didn’t even notice how she looked and would talk about normal teenager stuff,” says Summers.

Her dad credits Catie’s outgoing personality with her ability to maintain as normal a childhood as possible despite her illness. He says that her fellow students like to ask her what’s happening and “they all like the gory details.” Catie obliges them by patiently answering everyone’s questions because she realizes that if someone cares enough to ask, she should do her best to educate them. She’s even gone so far as to bring her X-rays into biology class and discuss what the tumors look like that plague her body. Catie is an expert on Osteosarcoma because her parents have never had a meeting with a doctor without her present. Summers says, “We’ve been up front with her about everything and answered every question.”

That kind of raw honesty is exactly what healthy kids need to stay close to their sick friends. Cross says, “Adults find it uncomfortable to talk about a serious illness because we don’t want to scare children, but we can help healthy kids by providing them with clear, accurate information on their level. Wes Yates agrees, “I know a lot about my disease because my parents tell me about it.” And he advises other sick kids to do the same. “You need to learn more about it and once you feel comfortable you should tell your friends when you want to. I mean, it’s just a disease – and everybody’s got some kind of problem.”

Deborah Bohn is a local mother and freelance writer.

books about friendship

A Bird and His Worm
By James Kaczman
(Houghton Mifflin; $15; ages baby/preschool)

All the Way Home
By Patricia Reilly Giff
(Turtleback Books; $5.99; ages 9 – 12)

Fab Friends and Best Buds
By Erika V. Shearin Karres
(Adams Media; $8.95; ages 4 – 8)

The Stone Soup Book of Friendship Stories
Edited by William Rubel and Gerry Mandel
(Tricycle Press; $8.95; ages 4 – 8)

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