16 Things Every Parent Needs to Know About Childhood Cancer
No parent should ever hear the words, “Your child has cancer,” but unfortunately many do. In 2019, 11,060 children in the United States under the age of 15 will be diagnosed with cancer, but there is much reason for optimism given advances in treatment and high survival rates.
This is not your mother’s, father’s, or even your best friend’s cancer
Cancer in children is very different from cancer in adults, says Rabi Hanna, MD, a pediatric hematologist-oncologist at Cleveland Clinic Children’s Hospital in Ohio. For starters, children are affected with different types of cancer than adults, namely blood cancers like leukemia, brain tumors, and Wilms tumor (a type of cancer that starts in the kidney), according to the American Cancer Society. They also tend to respond better to treatment than adult cancers, he explains.
It’s time to wipe the slate clean
The first thing Jennifer Reichek, MD, an attending physician in the Hematology, Oncology, Transplant department of the Ann & Robert H. Lurie Children’s Hospital of Chicago, tells parents when their child is diagnosed with cancer is to forget everything they think they know about cancer. The social worker turned physician is also the director of the STAR (Survivors Taking Action and Responsibility) Program at the hospital and an assistant professor of medicine at Northwestern University Feinberg School of Medicine. More than 80 percent of children with cancer now survive five years or longer, according to the American Cancer Society. “We expect to cure your child and that is the outcome we are working toward,” she says.
Knowledge is power
Hearing your child has cancer is gut-wrenching, but the best thing to do for your child is to try and gather as much information on the cancer and its treatments as possible, Dr. Hanna says. Because it’s hard to process all this information, it’s a smart idea to bring a friend along to your child’s appointments. “Always bring a second set of ears to your doctor’s visits, take notes to review later, and ask the doctor if you can record the conversation,” he says.
Second opinions help
If you’re unsure about the diagnosis, treatment options or side effect profiles of the recommended treatment, get another opinion, Dr. Hanna suggests. “Not all cancer needs to be treated immediately. You can wait a week or two to make a long-term plan.”
You need a dream team
Your child’s cancer treatment team should include an oncologist and other doctors or surgeons who will administer the treatments, social workers, nurses, art therapists, and more. “You are not alone and should never feel that you are,” Dr. Hanna says. These are services offered at some of the 50 best cancer hospitals in the United States.
Your other children need support too
Support groups are also helpful for the child with cancer as well as any siblings, Dr. Hanna says. “Other siblings are often profoundly affected when their brother or sister has cancer.” They likely have a lot of questions and may also feel left out and guilty for feeling that way. Ask your doctor what resources are available to help them cope with what is happening.
Thinking ahead matters
It’s only natural that your initial focus is on treating and beating the cancer, but children who are treated for cancer may experience short- and long-term side effects down the road. Some chemotherapy regimens can impair their ability to have children of their own (even though they are just children themselves), for example. In a study of childhood cancer survivors, 70 percent of women had kids by the age of 45 compared to 80 percent of their healthier sisters. Fifty percent of male cancer survivors had fathered a child (or got a partner pregnant) by age 45 compared to 80 percent of the siblings who served as they control group. The findings appear in the Lancet Oncology. “Freezing sperm in boys is possible,” Dr. Hanna says. Girls don’t have mature eggs to freeze before they enter puberty, but ovarian tissue freezing, an experimental procedure for preserving fertility, may be an option in some cancer centers, Dr. Hanna says. “It’s important to know your options.”
It’s your story to share or not share
If your child has cancer, you don’t have to tell anyone until you are up to it. 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.
There’s no room for blame and guilt
Parents also need to 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. One example: This 6-year-old was diagnosed with a brain tumor during a routine eye exam.
There is a crystal ball
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.”
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 ant 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.
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 (MSK) 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.
It’s OK to say, ‘I don’t know’
Some of your kids’ 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.”