Helping Children Cope with a Parent's Cancer

Empowering Children to Understand and Cope

With an immune system cancer, my late husband and I both knew the road could get rough. Like most young parents we were not experts in parenting and in a heartbeat we were faced with a daunting existential experience. We didn’t have guidebooks, nor social media for easy to join support groups. Comprehensive cancer centers didn’t exist, and local resources were minimal. But we realized that how we handled the situation could have a lasting impact on our children.

We were both in the healthcare field, my late husband much more so as a gastroenterologist, and we grasped the realities early on of what we were looking at. We were gifted with a relatively calm first two years before cancer started dictating much of what our family could and could not do.

Building Openness and Trust

Right away Nasir and I promised each other that as tough as his course of treatments might get, or as frustrated as we might find ourselves, we would not talk disparagingly about the doctors or other healthcare providers in front of our children. We knew his cancer care was not going to be easy, and we didn’t want our kids growing up not trusting medicine or its providers. Keep in mind our youngest was three weeks from being born and our older two were just 4 and 6 years old when he was diagnosed. They were young and impressionable and could be easily influenced by our language and actions.

Maybe this decision was rooted in Nasir being a physician. To this day I think it was an important decision. Mostly because his type of cancer required much specialized medical care and there were plenty of opportunities for our conversations to become negative in front of our children, bringing them undue stress, fear and anxiety, and possibly resistance to receiving medical care in the future.

Another promise we made to each other was that we would always be honest with our children. It can be tempting to shelter children from bad news. But downplaying cancer treatments to protect children can create anxiety. Children are very perceptive and we felt if ours were kept in the dark, they might imagine the worst scenarios and feel confused by changes at home that they didn’t understand. We provided our children with age-appropriate information and let them tell us what details they wanted to know. By our being truthful I feel they learned they could rely on us for information and feel secure knowing it was the truth.

Years later, I was grateful we took this approach when I was diagnosed with breast cancer. Our youngest was only 16 when I had to share the news. He knew he could trust that what I told him was indeed the situation, no different than when we were honest during his father’s cancer treatments.

Encouraging Emotional Connections - Helping Kids Feel Included

I asked my youngest last night, “What is something we did that you feel helped you when your Dad was ill?” Immediately he responded, “Taking us to see him when he was in the hospital. Visiting there helped me know he was going to be okay when he wasn’t at home.”

Nasir was hospitalized multiple times over the years. This is not uncommon for some cancer patients, especially post stem cell transplant. Balancing a donor’s immune system with his old immune system caused many problems. At one point, he developed a mycobacterium avium complex (MAC) infection, related to the tuberculosis family, in his tibia bone near his ankle. He was in an isolation room at Stanford University Hospital for 84 consecutive days (almost three months), while they waited for the pathology to confirm the diagnosis and treat the infection. Hospital isolation rooms are cold, lonely places. They are designed to ensure the safety of the patient and others, including hospital staff and visitors. There is restricted access, special air filtering systems, sealed windows and doors, and special communication systems that prevent unnecessary entry for staff when a patient needs something.

It was the summer of 2010 when the kids and I spent many days driving to and from Palo Alto (a three hour drive each way on a good day) to visit Nasir in isolation. Before entering his room we’d put on the yellow gowns, helping each other tie them in the back, then mask up, wrap booties over our shoes, and put on blue gloves that reached halfway up our arms. For our youngest, the gloves were near his elbows. Nasir’s face would light up when the children arrived, and we’d push the time limit in the room to the maximum allowed knowing it would be a couple of days before we’d see him again.

Nasir took this photo in 2010 during one of our visits in his isolation room at Stanford University Hospital where he stayed for 84 days because of an infection.

Over the years, I’ve heard people talk about not taking their children to see a loved one in the hospital, fearing it would traumatize the child. Sure, in an ideal world a child would never have to visit their parent in a hospital. But sometimes when cancer becomes part of a child’s family life, hospitalizations happen and including the child in visits can encourage emotional connections and provide them a better understanding of illness and recovery. Most of all it can create positive, meaningful memories that can be comforting for the child in the future as they look back and remember the ways they helped comfort their parent during a tough time.

Creating a Sense of Normalcy

Before Nasir was diagnosed, we already had our oldest daughter on the local recreation swim team. We figured it was a good way to teach her how to swim. At the time, we had no idea the role sports would play helping our family feel a sense of normalcy. For 18 years, our three children were involved in a revolving combination of swim, soccer, basketball, water polo, and baseball. For our kids, being part of a team, showing up, and focusing on the practice, meet, or game provided an emotional outlet. It encouraged social connections and helped provide them with a sense of control when they set personal goals and could see their progress. For Nasir and me, it was a beautiful distraction getting to watch them do something they enjoyed, while cheering them on. At one point, Nasir had trouble walking. So he’d sit in the car in the parking lot just behind centerfield watching our youngest play baseball, a sport Nasir loved to play as a child.

It wasn’t easy keeping three kids in sports when Nasir was ill. There were times when I didn’t know if I could keep the pace balancing the demands of his illness with maintaining our children’s involvement. In our hearts though, we both knew that what our children were getting from being a part of something beyond our family helped them get through some challenging days. For some families, sports may not interest their child. Whether it’s music, art, or dance, any activity that helps create a sense of normalcy for children and the chance to focus on something they enjoy is going to help support a sense of purpose and connection.

Bottom Line

Each situation, like each family and each diagnosis, has its own unique subtleties. Being open and honest with children in an age-appropriate way, encouraging emotional connections, and creating a sense of normalcy are some ways to help support children through their parent’s cancer.

Resources

Following are resources (with links to the website) that may be helpful for parents caring for a child whose parent is dealing with cancer or who has lost a parent to cancer. Our daughter worked with Camp Kesem as a camp counselor while in college.

Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.

National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.

The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.

CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.