It’s your story to share or not share
If your child has cancer, you don’t have to tell anyone until you want to. There are online blogs such as CaringBridge and services that can make it easier for you to share any news. “This way you don’t have to tell the same painful story over and over,” Dr. Hanna says.
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There’s no room for blame and guilt
Parents should understand that there is nothing they did or didn’t do that caused their child’s cancer, and they certainly didn’t miss the signs. Unlike cancers in adults, childhood cancers are not strongly linked to lifestyle or environmental risk factors. “These are not caused by diet or environment,” Dr. Hanna says. “Childhood cancers are most often due to abnormal gene development.”
And you didn’t miss the signs, Dr. Reichek adds. Sometimes there are no symptoms whatsoever. “Nobody instinctively thinks of cancer in kids. We tend to rule out common reasons before we go to cancer,” she says.
There is more information than you think
Thanks to the Childhood Cancer Survivor Study, researchers have been able to track childhood cancer survivors for a long, long time. There is now data on 35,923 childhood cancer survivors diagnosed between 1970 and 1999 as well as 5,000 siblings who serve as the comparison group. “We have a lot of information on what happens as they age,” Dr. Reichek says. “This is why we are very specific about what drugs we use and the order in which we use them as well as the dosing schedules.”
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Fever means an ER trip
It’s not always clear when you need to dial 911, but if your child is receiving chemotherapy through a central line (a thin tube in their chest that stays there until treatment is done), infection is a concern. “If your child has a fever, they must be evaluated in the emergency room to rule an infection out,” Dr. Reichek says. If their white blood cell count is low and indicates an infection, your child will likely be admitted to the hospital for more testing and antibiotic therapy to kill the bacteria causing the infection.