ATLANTA, Georgia (CNN) — Not every mother would allow her hair to be cut by her 4-year-old daughter, but Cindy Hurst thought it was a perfect idea.
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Hurst, a 42-year old single mother from Phoenix, Arizona, has breast cancer and was going to lose her hair anyway during chemotherapy.
Not only was Hurst worried about her own prognosis, but she was afraid of her daughter Ellie’s reaction to the news. “I’m the center of her universe,” Hurst said. “I started thinking about how I would tell her.”
Hurst is among hundreds of thousands of parents in the United States with the same dilemma, the American Cancer Society says. They are faced with the terrifying task of telling their children that Mommy or Daddy has cancer.
The cancer society recommends parents not keep their illness a secret and suggests they find a way to talk about it with their children. The group offers age-by-age advice on its Web site.
Two weeks after her diagnosis last October, Hurst broke the news to Ellie. She tried using vague terms and age-appropriate information. “I was expecting her to ask questions, but she would change the subject, so I didn’t know if I was getting through to her.”
Hurst thought it might help if she involved Ellie in the haircut. “She was so excited,” Hurst recalls. “She got her little kid scissors and I said, ‘Go for it! Cut it short everywhere!’ ”
An adult friend shaved the rest of Hurst’s head. Young Ellie was intrigued by the change. “She was calm afterwards and she kept rubbing my head,” Hurst said.
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The hair-cutting session helped, but Hurst said Ellie didn’t open up until she bought a doll aimed at helping children understand cancer, from a group called Kimmie Cares. “I noticed a turning point,” Hurst recalled. “She finally understood.”
The Kimmie doll comes with removable hair and a bandanna, similar to the kind worn by many cancer patients who lose their hair during chemotherapy.
The doll was the brainchild of Kim Goebel, who died of breast cancer nearly four years ago. Her sister, Kris Kalnow of Cincinnati, Ohio, has taken over the project.
Kids and cancer
What children of all ages need to know about cancer:
- Nothing your child did, thought or said caused you to get cancer.
- You can’t catch cancer from another person. Just because you have cancer does not mean that others in your family will get it, too.
- Just because you have cancer does not mean you will die from it. In fact, many people live with cancer for a long time.
- Scientists are finding many new ways to treat cancer.
SOURCE: National Cancer Institute
“Kim never had children of her own,” Kalnow said. “But she would see other women going through treatment, and many of them wondered how they would explain what they were going through to their children.”
Kalnow points out that her sister was able to see the first doll completed two days before she died. “Kim’s dream came true,” Kalnow said. “It makes me look up to heaven and say, ‘You did it.’ ”
The Kimmie doll is among a growing number of efforts to help children cope with the fear and uncertainty when a parent has cancer. For example, Gilda’s Club, a national support organization for cancer patients and their families, has “Noogieland,” whose programs serve children specifically.
The Children’s Treehouse Foundation serves a similar purpose. The counseling program was started seven years ago in Denver, Colorado, and is now available at 21 cancer centers around the United States.
Through art therapy sessions and hospital tours, the Treehouse program helps the children of cancer patients deal with feelings of sadness, anxiety and anger. Health Minute: Watch more on the Treehouse program. »
During a recent session at the Erlanger Cancer Center in Chattanooga, Tennessee, about a dozen children ages six to 12 toured the chemotherapy infusion and radiation rooms.
Guided by oncology nurse Janet Kramer-Mai, herself a breast cancer survivor, the group learned firsthand how tough having cancer can be.
“Cancer impacts the entire family,” Kramer-Mai said. “We give kids the tools they need to cope with whatever’s going on with Mom, Dad, Grandma or Grandpa.”
That’s what Chris Johnson of Trenton, Georgia, was looking for when he enrolled his two young sons in the program.
Johnson’s wife, Stacey, learned she had breast cancer four years ago. He says the kids’ support group has taken a lot of pressure off his wife. “The biggest benefit for the kids is just that it’s a safe place to ask questions that are emotional to them.”
Hayden Johnson, 11, gets something else from the sessions. “I like to know that I’m not the only one going through this,” he said. “You can talk about it and nobody will go out and tell and make fun of you.”
Chris Johnson admits he needs all the help and support he can get in reassuring his children. “You walk a fine line. You don’t want to throw all the medical terms at them and be cold and clinical, but you don’t want to shelter them either from the fact that this is a disease that kills people.” E-mail to a friend
Judy Fortin is a correspondent with CNN Medical News.