A cancer diagnosis in a child is completely devastating. It changes everything in a family. Emotions, routines, finances and realities are fundamentally altered. The young cancer patient and parents are fully in the trenches fighting this horrible disease, but additional and often forgotten victims are the siblings.
Imagine this. A young boy arrives at school. He sees all the kids laughing and playing. He observes a bit. His friend finally walks over and says “hey, why are you standing here?” He fakes a smile and says, “no reason, let’s go play,” He wants to say that he feels terrible, but he keeps it inside. His brother has cancer. His parents are frequently gone. The mood in the house is somber. He’s worried his brother will die. The medical machines and physical affects of treatment are scary. He feels frustrated (even jealous) that his sick brother gets so much attention. He feels guilty for feeling that way. There are so many confusing and emotional struggles. But he joins the other kids at school and pretends everything is fine.
How does an adult cope when a loved one is diagnosed with cancer? Even as adults, it’s a huge blow. Imagine being a child and hearing that news. Life changes all around you, but you don’t fully understand it. The medical terms, the partial explanations, the sadness of your adult circle, daily life is turned upside down, everyone is tired, your brother or sister looks and feels horrible. You’ve heard stories of people with cancer dying. You hear conversations that scare you, but you’re afraid to ask for details or explanations. And you have no idea how to process or cope with such tragedy at a young age.
Having a child with cancer is as bad as you might think, probably worse. You never want your child to hurt or suffer. Cancer takes hurt to a new level. The ever-present and terrifying concern for survival looms daily as well. Parents try desperately to care for their sick child while also maintaining responsibilities at home, work and to other children, but it’s impossible to handle everything as you once did. When my oldest son, Jake, was diagnosed with cancer, I was instantly concerned about his brother Avery too. He was young and I knew he’d have to face a lot of challenges. We tried to do everything we could to make it easier for him. We made sure he stayed with loving family members, that he had good meals, that we kept in touch with him as much as possible, that we constantly told him how much we loved him. When we were home with his recovering brother, we tried to take turns spending special time with him. We tried to include him in games and limited activities with his brother. It was not the same though. His brother was fragile, hurting and scared. He didn’t sleep well and took a lot of medicine that made him different. We weren’t the same either, even though we tried to be as upbeat as possible with him. Unfortunately, cancer took a long and arduous toll with medical procedures continuing for 15 years. Another brother (Pierce) joined the family and both siblings essentially grew up watching Jake endure one thing after another. There have been constant surgeries, hospital stays, procedures, worries, tests, mobility issues, horrible side effects, and emotional struggles. That’s a lot for any child to take in, both for the patient and the siblings.
I’ve constantly worried about my children because of this harsh fate. I’ve read books and articles about how to help them, prayed for them, talked to professionals, asked for help, tried to keep them occupied and entertained, and showered them with as much love as possible. Of course, life will sometimes throw hard realities at us and our children. We can’t always protect them or make things better. That doesn’t mean we don’t try. To this day, I wish I had known more and done better.
The sad reality is that my son’s cancer diagnosis not only caused tremendous struggle and hardship for him, it hurt his brothers as well. They’ve had to contend with issues of jealousy and abandonment. They’ve had to alter plans and daily routines constantly. They’ve witnessed very scary and sad realities. They’ve been worried when things are not going well. All of this while just trying to grow up.
On the good side, they have learned more compassion for others. They’ve gained a resilience in coping with struggles. They’ve felt and understood the blessing of community and support. They’ve joined us in charity/fundraising activities for childhood cancer. They’ve seen continual efforts at trying to remain hopeful and optimistic in hard times. These are all positive things, but of course I wish that cancer had never affected our family.
When tragedy strikes, we all just do the best we can. I firmly believe that information and reminders are very helpful though. A conscious and mindful approach to handling the stress is important as well. In that regard, below are some insights that I have learned first-hand and through years of researching ways to help siblings of a cancer patient. Parents, grandparents, aunts, uncles, teachers, friends and neighbors can help siblings by keeping the following in mind:
- Be aware and try to understand that siblings will have varied emotions. They may face fear and anxiety, confusion, abandonment, jealousy, sadness and/or guilt. They often won’t talk about these feelings, but be on the lookout and be available to talk with them or seek help as appropriate.
- Know that their behavior may change in many ways. Siblings have experiences of sleep disruptions, bad dreams, moodiness, changes in appetite or regression. If these behaviors develop, realize that it is likely connected to the tragedy facing the family. Be patient and offer extra support.
- Most hospitals have child life specialists, social workers or counselors that can offer guidance. Some even have programs specifically for siblings. Ask for help in the form of meetings, literature, websites, activities or otherwise.
- It’s important to try to maintain a sense of normalcy. It helps for siblings to stick as close to their previous schedule as possible. School is important and socializing with friends can do wonders. Let siblings know that it’s ok to laugh and have fun still. Allow them to participate in planning their care and help make decisions about changes that must occur.
- Explain the cancer diagnosis in age-appropriate terms. Let them know they are encouraged to ask questions and that their feelings are very important to you. Assure them that you understand this situation impacts them too. Constantly reassure your love for them. Spend as much time with them as possible. Call and FaceTime if you can’t be there regularly. Try to remain positive so they will feel a sense of hope and calm.
- Contact the school and let the teachers and administrators know what’s going on. Ask them to keep an eye on the sibling and watch for changes in behavior. Also ask for a little extra support as they navigate the difficult time.
- Make sure the sibling knows they didn’t do anything to cause the cancer and that it is not contagious.
Most importantly, just love the siblings and let them know you care about them too. Trust your instincts and do the best you can. This is an extraordinarily hard time. You can’t be everywhere and everything to all family members, but if you lead with your heart you can’t go wrong.