“Actually, it seems strange, but I am not really so worried about me, I just don’t know how to tell my sons.” says Jane, a 52-year-old woman who was recently diagnosed with lymphoma. “If they were younger, maybe I could just hide it from them, but my boys are expecting me to be there at soccer games and teacher conferences, and drive them to friends’ houses. They have busy lives, they should not have to worry about me, and I definitely don’t want to be a burden on them.” For patients who are parents, figuring out how to share their cancer diagnosis with their children can be a real challenge.
If the children are babies or toddlers, things are straight forward from a psychological perspective, given their care does not require explanations about cancer or treatment. They need primary caregivers who will be attentive, warm, caring, cuddling, and mindful of their need for nutrition, proper sleep, and play time. Susan would often reassure herself during hospital stays for her myeloma treatment that her 1-year-old daughter Eliza was safe, and well cared for, with her mother-in-law. “Of course I want to be there, but I know Eliza is in good hands, and we will have time together next week. Reading her stories on FaceTime is the highlight of my day, and helps me feel connected to her.”
Children under the age of 10 are usually observant, curious, and caring. They respond well to straight forward answers to questions. Jennifer was in the middle of chemo for breast cancer, and her son Tom was 6. Tom would ask his mom about her bald head, but also gently pat her scalp from the backseat of the car. One infusion was on the same day as an event at Tom’s school, and Jennifer missed it. Instead of making up a work or traffic excuse, Jennifer told Tom she was getting medicine to “keep cancer under control.” Tom had already been told that cancer meant part of the body was growing too fast, so for him cancer being under control meant his mom was growing “at just the right speed,” which was a reassuring thought for him. For Jennifer being able to talk a bit about cancer, at Tom’s level of understanding, was a relief. “Trying to hide the side effects of treatment would have been exhausting, and Tom obviously saw the change in my hair.” Certainly there was grief because she missed the event, but Jennifer knew she and Tom would have other activities to share, and they specifically set aside time to catch up about the school event (and other school activities important to Tom) over a board game before bed.
Preadolescent children, ones in middle school, often want to be helpful as this is an “industrious stage” of development. When they are given a task, one that is matched for their ability, they tap into a sense of agency that is helpful in developing a healthy self-esteem. Jim was limited from doing physical activity after his surgery for colon cancer, which was disappointing because he had always been the one to build the sets for his 12-year-old daughter Judy’s school plays. While Jim was not able to do any of the construction himself, he was able to find a handy neighbor who was appreciative of the chance to build the set and make a little extra money. Judy and her school friends enjoyed working with the neighbor, and Jim was able to assist with the designs. Jim was especially proud to see Judy acknowledged in the play’s program as one of the set designers for the production, and when she took a bow on stage, she pointed to her dad in the audience. “Even though cancer slowed me down for now, it did not stop me from appreciating Judy and encouraging her to carry on with the play.”
Teens are tricky (no news flash there), and their reaction to cancer will vary depending on the teen’s personality, as well as by the day and maybe even the hour of the day. Fortunately, the same principles apply to manage teens as with children of other ages; provide a caring environment, explain things on their level (answer questions clearly as possible but not too detailed), and let them help as they are willing and able. Let them hang out with friends, even if the timing is not ideal (the day you get home from the hospital). They are likely to circle back home, and be attentive to a parent with cancer, when they are ready. Jane, the woman with 2 high school age sons, took this advice and gave herself permission to tell the boys her diagnosis and treatment plan. She had information available from a trusted group (Lymphoma and Leukemia Society) to share if they wanted to read more, and offered to let them meet her oncologist if they wanted. “I am doing everything I can to manage cancer, and be healthy, which is reasonable for them to know and see.” With specific instruction, the boys did a bit more picking up at home, cooked a couple dinners, and asked for rides to games from friends. “I know that when I take care of family I don’t think of them as a burden, so why should I consider myself one? Shoot, they probably feel good about contributing!” said Jane. While not all kids are going to be able to help in a way you may hope for, asking for specific help, small tasks on certain days, is reasonable.
There are many programs for kids whose parents are going through cancer. Ask at your cancer center about specific support for families including programs like CLIMB and Camp Kesem. Ask the guidance counselor at your child’s school about support too. For kids who are struggling with depression or anxiety, speak to their pediatrician about getting treatment.