As I went into work yesterday, I walked past a mom carrying her son out of the cancer center. The boy in his mom’s arms could not have been more than 7 years old, and had his head resting on her shoulder with his arms wrapped around her in a gentle hug. His status as a “cancer patient” was immediately obvious, even just in passing. The boy was bald and thin, weak to the point of needing to be carried, and had black marks on his chest indicating he was in the cancer center for radiation therapy. The tenderness with which the mom carried the boy spoke volumes about her love for the child. My first thought was about how the cancer had changed the physical appearance of the boy, but then I started thinking about how much the cancer has likely changed the mom. Even without knowing the specifics of the child’s diagnosis, or prognosis, it was clear that the mom was in the middle of a profoundly life-altering experience.
Finding out your child has cancer is traumatic. All of a sudden, you’re questioning the future in new and profound ways: Will my child live to adulthood? What will the chemotherapy or radiation do to his body and mind? Will he finish school? Get married? Will I ever be a grandparent? Not only is there doubt and worry about the future, but there is major life disruption from the time of diagnosis through treatment. Instead of going to work, you’re scheduling doctor’s appointments and spending time in the hospital. Instead of going to t-ball games or gymnastics, you’re going to the pharmacy and learning about medication regimens. Instead of going to the beach with cousins, you’re at home, keeping your child out of the sun and away from other kids who may have colds.
The trauma of a child’s cancer diagnosis may also lead to depressive type symptoms. You may wonder, “Why him? Why not me instead?” The grief may be so profound that activities you used to enjoy now lack meaning or value. In caring for your child, you might lose track of taking care of yourself – eating unhealthy food, not getting enough sleep or avoiding friends. When you spend too much time on caregiving (yes, this is possible, even when your child has cancer), and no time on self-care, you’re at risk for depressive symptoms such as fatigue, trouble concentrating and irritability.
While there is no one right way to get through the experience of parenting a child with cancer, there are some steps that can help:
Allow for grief. Set aside a little time daily to allow for sadness. After 30 minutes or so, take several long, steady, deep breaths, stand up and stretch your arms over head then release. Take a short walk and then return to your daily activity.
Let other people help. Be specific about what would be helpful. Give friends and family chores. Tasks may include driving to appointments, cooking meals, housekeeping, or babysitting a sibling.
Keep an organized medical notebook. Keep medication lists, appointments, questions for doctors, test results all in one place. You don’t want to waste energy trying to keep track of everything in your head.
Control your internet time. Stop doing cancer education and research before dinner. This will help you relax before bedtime. Cancer worry can be a major sleep disruptor.
Pick a new activity. Even if you can’t play sports with your child during cancer treatment, there are definitely other ways to “play.” Pick up a new board game, buy some playing cards, or get some art supplies and create your own game. Games and the giggles that may come along with them are good medicine.
Don’t go it alone. Meet with another parent whose child is living with cancer, or attend a support group. A good support group allows people to communicate, but also problem solve together, not just complain.
Take breaks. This recommendation holds for all parents. The truth is that you are a better parent if you take time to refuel, catch your breath, and engage in self-care. No one person is able to be a 24/7 caregiver – it is not possible. Spend time with your other children. See a friend. Walk outside and look up at the evening sky.
Parenting a child with cancer is a traumatic ordeal that comes with grief, worry and major life interruption. But, although it may not feel like it at times, you can survive.