When a child has a brain tumor, it affects the entire family. Emotions can be raw. Stress and anxiety levels rise. Family schedules are more hectic than ever. Parents and others can quickly find themselves sleep deprived, worried and stretched beyond their capacity. To help you, the American Brain Tumor Association (ABTA) offers a wide range of support services for parents, caregivers, patients and others.
You don’t have to have all the answers when your child is the patient, but you do need to have conversations. Most medical teams have a social worker or child life specialist who can help you explain the diagnosis, tests and treatments in a way your child or teen will understand. Accurate information presented in a non-threatening, age-appropriate way can prevent children from imagining explanations that are scarier than the truth and can help them better cope with tests and treatments. Avoiding the topic does not eliminate the concerns or questions your child has, even if they do not express them.
Open, honest and loving conversations help to address fears and misconceptions. Create an atmosphere where your child will want to ask questions or return to the topic whenever new questions or concerns arise. Some children will want lots of details, others will not. Follow your child’s lead.
Discussing the diagnosis, tests and treatments is also an important opportunity to reassure your child or teen. Children and teens have misconceptions that must be addressed, including:
- This illness is not the result of something you did or did not do. It is not related to your behavior or your thoughts. It is not a punishment.
- A tumor is not contagious. You cannot “get it” or “give it” to anyone.
- You are still you. Having a tumor in your brain does not change who you are. It also does not change my love for you.
Be prepared for difficult questions including “Am I going to die?” Be honest and direct. Tell your child that everyone is different and reacts differently to the illness and the treatment. Together with your medical team you are doing everything you can to make the illness go away.
Talking to Siblings
When a child has a tumor, the impact of the situation quickly extends to the entire family. Routines are disrupted. Priorities are shuffled. Parents are pulled away from other day-to-day activities to attend to the needs of the child. Necessity requires brothers and sisters to be left in the care of other family or friends. Everyone is worried.
Siblings can feel confused, neglected and guilty. In the rush of medical needs, it can be easy to short change conversations with brothers and sisters. Even at an early age, children sense when there is something wrong. They may even think that they created the problem. Keeping them informed helps them feel connected to their sibling. Provide honest, age-sensitive information.
Address Their Fears and Concerns
Common misconceptions arise among siblings, too. “Can I catch it?” “Did I cause it?” “Will I get it?” The social worker or child life specialist on your medical team can help you communicate effectively with family members, too.
The treatment process can be lengthy. Siblings can feel as if all the attention and energy is spent on just one child in the family. Once the immediate crisis passes, find ways to reconnect. Share a meal, a goodnight book, a conversation while driving. Focus on quality, not quantity. Even if you have just a little time to spare, devoting your undivided attention to others in the family will make a difference.
Oftentimes, brothers and sisters want to help. They want to visit the hospital, send cards or organize a bake sale. If that is the case, try to find ways for them to help. It will give them a concrete way to process their own emotions and to demonstrate some small measure of control over what is happening in their lives.
Impact on Relationships
A crisis can bring out the best in relationships, but that is not always the case. A crisis and its aftermath can strain healthy relationships and expose cracks in struggling relationships.
Whether you are married or divorced, maintaining a relationship with a co-parent can be difficult while caring for child with a brain tumor. Issues you have struggled with in the past can return. Guilt, anxiety, exhaustion and stress can complicate relationships even further. Try to maintain communication and honor the experience of others going through the situation. Be open and honest with your care team regarding relevant family history, custody and other emotional concerns that may spill over into the care environment.
Be aware the problems that can emerge in other family relationships including those with extended family members, in-laws, step families and the like. Each person has a legitimate interest in the child and the child’s treatment. Yet, it can be very frustrating and time-consuming to communicate with each of them. Consider designating a close friend or other family member to serve as a “spokesperson” keeping all informed and updated.
Support from Someone in Your Shoes
Sometimes the very best support comes from someone who truly lives the life you live. The ABTA can put you in contact with other families who are in a similar situation through our Connections Online Community, powered by Inspire. It is comforting to talk to other parents about the challenges they have overcome, to share practical advice, insight and friendship. Many Connections participants are inspired by the people they meet and the experiences they share.
Support from ABTA Care Consultants
One of the single best resources families have are the ABTA Care Consultants. Our Care Consultants work with families, caregivers, and patients daily to address a wide variety of needs. They are caring, compassionate, trained counselors who listen with their heart and respond with wisdom and resources accumulated over many years. They can help you connect with a wide range of support services available to you through the internet and through community-based or institution-based resources. To connect with the ABTA Care Consultants, please call the CareLine at 800-886-ABTA (2282) or email us at ABTAcares@abta.org.
Care for the Caregiver
If you are the primary caregiver, you have a lot to juggle. It is critically important that you care for yourself while you are caring for another. You are managing tremendous change. Your day-to-day activities, your role, your routine and your priorities dramatically shift.
It will take time to reach a new “normal.” Keep communications lines open in your family and among your support system Ask for and accept the help you need to care for yourself, the rest of your family and your child. Look to friends, other family members, your faith community and others to help lessen the impact and lighten the load.
Be open to new ways of doing things. Accept that some of the things you “always did,” you simply will not be able to do. When someone offers to lend a hand, realize their way of doing it may not be your way, and that’s OK.
Take time to care for yourself. In the first few difficult days and weeks, try to maintain a healthy schedule for eating and sleeping. As the treatment process progresses, maintain your health and strength. Seek out help from social workers, clergy and others. They can help you manage your fears, concerns, stress and anxiety.
For more information, go to our Caregivers page.