By: Michael Terao, MD, FAAP & Mary Jane Hogan, MD, MPH, FAAP
If you are reading this, you are a parent or someone who cares for a child or teenager recently diagnosed with cancer. Having a child of any age diagnosed with cancer is an upsetting experience. We would like to provide you with information to help support you through this difficult time.
All feelings are valid
Hope is an important part of coping. But hope can mean many things. Some parents focus on hope for the day, such as hoping that their child has a good day. Some parents focus on longer-term hope, such as hope that their child will one day be cured. Hope can change during cancer treatment.
Try to find both little and big things to hope for. Focus on keeping that hope by sharing it with your child, family, friends, and your child's medical care team so that they can share their hopes with you.
Fear. It is okay to be afraid. Many parents are afraid of what
chemotherapy and other cancer treatments will do to their child. Many parents are afraid that their child's cancer will not be cured. Often parents are afraid of not knowing what will happen today or tomorrow. Cancer treatment can have likely and unlikely effects.
Please let your child's doctors or nurses know whatever you fear so that they can answer your questions about cancer treatment. This will help you and your child work through and deal with these fears. Talk to your child's doctor and medical care team about these feelings so that they can address any doubts or questions that arise.
Anger. Often parents feel angry for not being able to do more for their child during this time. Some parents are angry at family, friends, their doctors, or even God for not being able to immediately cure their child's cancer. Cancer treatment is a long and confusing journey.
Ways to relieve your anger include taking a slow, deep breath, counting slowly to ten, or taking a walk. Try talking to a friend or family member or asking your child's doctor or medical team for help.
Guilt. Some parents blame themselves for not catching the cancer sooner, or for their child having cancer. Other parents feel guilty for not being able to do more to alleviate their child's suffering. Cancer is not any person's fault. The causes of cancer are complicated. Typically, cancer is only detectable when there are enough cancer cells to cause
symptoms, so it is hard to find cancer before cancer appears.
Sadness. Sadness is another normal reaction to cancer. Many parents feel sad because cancer has turned their lives upside down. The change from a child who was healthy to a child who needs cancer treatments affects the child, family and friends in different ways. Some parents have feelings of sadness for losing their previous way of living.
Discuss these feelings with your family, friends, your child's doctor, or even your own doctor. It's also important that you find ways to take care of yourself so that you can stay strong and support your child through these challenging times.
Finding balance
A child's cancer diagnosis affects the entire family. While caring for your child with cancer is important, you will also need to find ways to balance that care with your job, your spouse, and your other children. This is never easy.
Everyday needs. When family and friends offer to help, take them up on it. Make a list of the kinds of things that would be the most helpful, like making meals for your family, giving rides, or running routine household errands. It might also be helpful to simply sit and listen to your feelings. If friends and family can provide the help you need, please ask your doctor or social worker for resources that can help.
Relationships. Your child's cancer diagnosis can also put an incredible strain on your relationship with your significant other. Often both parents cannot go to every clinic visit or be together with their child during their hospital stays. It can become difficult to understand what the other parent is going through. This is especially true if one parent is taking on more of the daily caregiving and knows more about things like, how they like to take their medications, which medications to take and when, or even what it is like watching them go through treatment.
Help each other out by writing out questions and instructions on paper, keeping in contact throughout the day, and making important decisions together. Spend time together to talk about things as well as to enjoy each other's company. Ask your child's doctor and medical care team to provide information to both of you so you both have the support you need.
Finances. A cancer diagnosis can also be an incredible financial strain. Often a parent will have to leave their job to take care of their child. Financial difficulties can be made worse by the cost of medical care. If you find yourself having financial difficulties do not hesitate to ask your child's doctor or social worker for help. Your child's medical team may be able to find financial resources that can help.
When you are up late worrying and researching your child's diagnosis…
It is normal for parents of children with cancer to search the internet for answers. But it's important to keep in mind that cancers in children and adolescents are different from adult cancers. You may read about a child with the same cancer as your child, but their experience may be very different. Remember, cancer statistics are based on large numbers of people and cannot say what will happen with your child.
The best way to get information about your child's cancer is to talk directly with your child's doctor. Do not be afraid to ask specific questions, such as the chances of your child being cured, or what will be done if your child's cancer doesn't get better with initial treatment.
Although not all information found on the internet will be reliable, there are sources we recommend for learning more about your child's cancer, including the links below.
More information
About Dr. Terao
Michael Terao, MD, FAAP, a member of the American Academy of Pediatrics Section on Hematolgoy/Oncology, was diagnosed with cancer at 20 years old during his sophomore year of college and underwent surgery and chemotherapy. Prior to being diagnosed with cancer his original plan for life was to be a high school English teacher but after his cancer experience he decided to become a pediatric hematology/oncology physician. He recently completed a pediatric hematology/oncology fellowship at St. Jude Children's Research Hospital and is now a pediatric hematology/oncology attending physician at Medstar Georgetown Hospital.
About Dr. Hogan
Mary-Jane Staba Hogan, MD, MPH, FAAP, is an Assistant Clinical Professor at Yale School of Medicine, Pediatric Hematology Oncology section. She contributes educational commentary about cancer and blood disorders as the American Academy of Pediatrics Section on Hematology/Oncology education committee chairperson, Benign Hematology and Cancer survivorship policy review committees, and for the editorial boards of AAP Grand Rounds, Pediatrics, and PREP Self Assessment publications.