Follow up matters… forever
Once your child is cured, it’s tempting to want to forget all about cancer, Dr. Reichek says. You can’t. “Your child will be followed for five years from diagnosis or two years from stem cell treatment in the general oncology clinic to make sure their tumor doesn’t recur,” Dr. Reichek says. After that time, your child will likely receive care in a survivor clinic or program for the long haul. “Even if they don’t have short-term side effects as a child, they can as an adult.”
Some young women who are treated for Hodgkin’s lymphoma receive radiation to their chest and are at higher risk for breast cancer as they age. “Children who have leukemia undergo spinal taps to see if the cancer has spread, and we know that resulting cognitive changes may not manifest until high school,” she says. “Doctors in a survivor’s clinic are vigilant about asking questions about school, grades, and the ability to keep up with peers.”
Your kids have a right to know what’s happening
Children always want to know what is coming next, and this is true during cancer treatment as well. “The best thing parents can do is be honest with children in an age-appropriate manner,” says Julia A. Kearney, MD, clinical director of Pediatric Psychiatry for MSK Kids at Memorial Sloan Kettering Cancer Center in New York City. “This also helps them maintain their trust in you so they will come back to you later with questions or concerns.” Some parents may not want their children to know they have cancer, but for older children, this may not be a good call. The child may hear about it from someone else or even while in the hospital for treatment, she says.
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It’s OK to say, ‘I don’t know’
Some of your kid’s questions won’t have easy answers. If you don’t know the answer say, “That’s a great question, we can ask your doctor at the next visit,” Dr. Kearney says. There are some questions that don’t have answers. If your child asks if they are going to die, make sure they know that most kids with cancer do very well today.
“Say, ‘You are thinking of adult cancer like your aunt had and you don’t have that. We may have a rough year, but the doctor thinks you are going to be OK,’” she says. If the prognosis is uncertain, the best way to answer is to say, “Not right now. Right now, we are focused on getting rid of all cancer.”
Fear is normal
Cancer is scary and it’s normal for your child (and you) to be scared, Dr. Kearney says. “Tell your child to let you know when they are scared so you can address it together.”
There’s a lot of misinformation out there
Kids have access to so much information today on the internet and not all of it is going to be accurate or appropriate. Ask your doctor to recommend articles or books for your child if they like to read, Dr. Kearney says. This advice holds for parents too. When New York City mom Tara Lipton’s son was diagnosed with brain cancer, she had a hard time reading the information in chat groups of other moms going through similar ordeals. “I couldn’t handle it, but there was some good information on coping with side effects so I have a close friend follow the relevant threads for me.”