It is important to defy any urge you have to shield your child from the truth, because honesty is one of the most important gifts you can give him. Your child needs to know what is happening now and what is to come. Because you are coping with a bewildering array of emotions yourself, sharing information and providing reassurance and hope may be difficult. In the past, shielding children from the painful reality of cancer was the norm. Most experts now agree that children feel less anxiety and cope with treatments better if they have a clear understanding of their illness. It is important to provide age-appropriate information soon after diagnosis and to create a supportive climate so children feel comfortable asking questions of both parents and the medical team. Sharing strengthens the family, allowing all members to face the crisis together.
Before Alissa’s first surgery for spinal astrocytoma when she was 6 years old, I took a little chalkboard, drew a stick figure with circles for vertebrae. I pointed to her back, and explained what the spinal cord does. I told her, “You have something growing in there that needs to be removed. The doctors need to cut your back and remove it.” We didn’t use any baby talk. We told her and her brother Nicholas exactly what was going on.
You should tell your child as soon as possible after diagnosis. Sick children know they are sick, and all children know when their parents are upset, frightened, and withholding information. In the absence of the truth, children imagine—and believe—scenarios far more frightening than the reality. With no warning, they have found themselves in strange surroundings; all of their normal activities stop occurring; total strangers are performing scary and painful procedures on them; their parents are upset; and everywhere they look, they see sick or disabled children. They may not be talking about their fears, often in an effort to protect their parents, but they know something is very wrong.
We immediately told Ethan that he had a brain tumor. His father and I were crying and he knew something was wrong, so we felt this was the best approach. He was 6 years old at the time, and we told him he had something growing in his head that should not be there and he needed surgery to take it out. He knew about cancer before he had it, and he knew that it was a bad thing to have, but he has handled the knowledge that he had it very well. Now that he is older, when he looks back on those early days he says that he was glad that we told him what was going on and that he was never frightened. I wish that I could say the same, but I am grateful that we were able to make him feel comfortable about what he was facing.
The most loving thing a parent can do is to tell the truth before the child is overwhelmed by the fear of what she has imagined. Staying silent has another side effect: it undermines the credibility of the parent with the child. This will be a very long and frightening journey, and your child must believe you are in this together and that she can always count on you to support her and tell her the truth.
Who should tell your child
We felt we had to tell Jessica the truth from the very beginning. She needed to know that she could trust us. Talking about it helped her understand why the treatments were necessary. We told her that her hair would fall out, but that it didn’t matter. She would still be beautiful to us, with or without hair. We told her when something would hurt and when it wouldn’t. We told her we were all in this together and that we would discuss everything every step of the way.
Who tells your child about his illness is a personal decision, influenced by the age and temperament of the child, religious beliefs, and sometimes physician recommendation. Children ages 1 to 3 usually fear separation from parents, so the presence of strangers in an already unfamiliar situation may increase their anxiety. Many parents tell their small child in private, while others prefer to have a family physician, oncologist, social worker, member of the clergy, or other family members present. Many children’s hospitals have child life specialists who can help explain the diagnosis and treatment to children in an age-appropriate manner. They can help you develop a strategy to speak with your child about the diagnosis. Often, they have age-appropriate materials (books, pictures, dolls) to help with the conversation.
When we first found out that the MRI showed a moderately large tumor, we didn’t tell Billy, who was 2 years old, until a few days later. I think we needed to be clear for ourselves what the plan was going to be. Over the next few days, we started to tell him that the MRI pictures showed that he had a boo-boo in his head, and soon we would take a trip to a hospital with Grammie where the boo-boo would be fixed. When the day came for surgery, Grammie was with us when we told him again about the boo-boo inside his head, that this was the day for it to be fixed, and that he would take a nap while the doctors fixed the boo-boo. He asked if we would be with him, and we each reassured him that we all would be there when he woke up. I had decided not to mention any pain or about bandages near his eyes, but I think now that we know a little better, we might have said something about that, too.
Children ages 4 to 12 sometimes benefit from having the treatment team (neurooncologist, nurse, social worker, child life specialist, or psychologist) present. It provides an opportunity to promote the sense that everyone is united in their efforts to help your child get well. Staff members can answer the child’s questions and provide comfort for the entire family. Children in this age group frequently feel guilty and responsible for their illness. They may harbor fears that the cancer is a punishment for something they did wrong. Parents, social workers, psychologists, child life specialists, and nurses can help explore unspoken questions and provide reassurance.
My 6-year-old son Brian was sitting next to me when the doctor called to tell me that he had cancer. I whispered into the phone, “What should I tell him?” The doctor said to tell him that he was sick and needed to go to a special children’s hospital for help. As we were getting ready to go to the hospital, Brian asked if he was going to die, and what were they going to do to him. We didn’t know how to answer all the questions, but told him that we would find out at the hospital. My husband told him that he was a strong boy and we would all fight this thing together. I was at a loss for words.
At the hospital, they were wonderful. What impressed me the most was that they always talked to Brian first, and answered all his questions before talking to us. When Zack (Brian’s 8-year-old brother) came to the hospital 2 days later, the doctors took him in the hall and talked to him for a long time, explaining and answering his questions.
I was glad that we were all so honest, because Brian later confided to me that he had first thought he got cancer because he hadn’t been drinking enough milk.
Adolescents have a powerful need for control and autonomy that should be respected. At a time when teens’ developmental tasks include becoming independent from their families, teens with cancer are suddenly totally dependent on medical personnel to save their lives and on parents to provide emotional support. Teenagers sometimes feel more comfortable discussing the diagnosis with their physician in private. In some families, a diagnosis of cancer can create an unwelcome dependence on parents and can add new stress to the already turbulent teen years. Other families report that the illness helped forge closer bonds between teenagers and their parents.
Just when I had expected her to become a rebellious teenager, Florence (15 years old) became even closer to me than before. She knew that I had believed her when she started having symptoms from the pituitary tumor and sometimes she said I’d saved her life.
Children and teens react to the diagnosis of cancer with a wide range of emotions, as do their parents. They may lapse into denial, feel tremendous anger or rage, or be extremely optimistic. As treatment progresses, both children and parents often experience a variety of unexpected emotions.
What to tell your child
We’ve really marveled as we watched Joseph go through the stages of coping with all of this just as an adult might. First of all, after he was diagnosed in April, he was terrified. Then in for 2 months he was alternately angry and depressed. When we talked to him seriously during that time about the need to work with the doctors and nurses against the cancer no matter how scary the things were that they asked him to do, he looked us right in the eye and screamed, “I’m on the cancer’s side!” Then over the course of a few weeks he seemed to calm down and made the decision to fight it, to cooperate with all the caregivers as well as he possibly could and to live as normal a life as he could. It’s hard to believe that someone could do that at 4 years old, but he did it. By his 5th birthday on July 26th, he’d made the transition to where he is now: hopeful and committed to “killing the cancer.”
Children need to be told that they have a tumor in their head or spine and what that means, using words and concepts appropriate for their age and level of emotional development. The sooner they are comfortable with the word tumor, the less mysterious it will seem and the more powerful they will feel in dealing with the disease. Very young children might be satisfied to hear, “A tumor is growing in your head and it should not be there. We are going to the hospital so the doctors can take it out.” Older children may benefit from reading books, alone or together with a parent; surfing reliable Internet sites; or asking members of the treatment team questions to get the information that matters most to them.
- The disease is called a brain (or spinal cord) tumor and this is what it means (supply age-appropriate description).
- No one knows what causes brain tumors, and it is not the child’s fault she got sick.
- Some things about brain tumors are scary—for the child and the parents—and it is okay to feel afraid, confused, angry, or sad.
- It may be necessary to spend a lot of time in the hospital.
- There might be some unpleasant side effects, such as hair loss and nausea, but most of them are temporary.
- The parents, the child, and the healthcare team all have jobs to do to help the child get well, and everyone will work together to make that happen.
- Questions or worries are normal, and the child should feel free to ask a parent or someone on the healthcare team any questions she wants to ask.
- There are many things you as parents cannot control, but you will never lie to him and will always try to make sure there are no surprises.
- School-age children might not be able to go to school for a few months, but there are ways they can keep in touch with their classmates while they are out of school.
- Cancer is not contagious; friends and family cannot catch it.
My 4-year-old daughter told me very sadly one day, “I wish that I hadn’t fallen down and broken inside. That’s how the cancer started.” We had explained many times that nothing she did, or we did, caused the tumor, but she persisted in thinking that falling down did it. She also worried that if she went to her friend Krista’s house to play that Krista would catch cancer.
Children will have many questions throughout their treatment. Parents must assure the child that this is normal and that they will always answer the child’s questions honestly. Gentle and honest communication is essential for the child to feel loved, supported, and encouraged.
Our daughter was diagnosed as a preschooler. The older she gets, the more she asks: where’s my tumor, why do I have it, what are all the medications for. She wants more of the details, and she needed to know the brain tumor wasn’t her fault. We were talking about it recently, and she asked, “Why do I have it, Mommy, was I bad?”
When your child asks a question, take a moment to be sure you heard and understood it correctly and to formulate a thoughtful answer that your child will understand. Parents are under tremendous stress and have many things on their minds. In this distracted state, it is easy to toss off an easy answer or answer a question the child did not ask; but doing this can increase the child’s confusion and undermine their trust in the parent as a source of information. Barbara Sourkes, PhD, explains the importance of understanding the child’s question before responding:
Coping with the trauma of illness can be facilitated by a cognitive understanding of the disease and its treatment. For this reason, the presentation of accurate information in developmentally meaningful terms is crucial. A general guideline is to follow the child’s lead: he or she questions facts or implications only when ready, and that readiness must be respected. It is the adult’s responsibility to clarify the precise intent of any question and then to proceed with a step-by-step response, thereby granting the child options at each juncture. He or she may choose to continue listening, to ask for clarification, or to terminate the discussion. Offering less information with the explicit invitation to ask for more affords a safety gauge of control for the child. When these guidelines are not followed, serious miscommunications may ensue. For example, an adult who hears “What is going to happen to me?” and does not clarify the intent of the query may launch into a long statement of plans or elaborate reassurances. The child may respond with irritation, “I only wanted to know what tests I am going to have tomorrow.”
Table of ContentsAll Guides
- 1. Diagnosis
- 2. The Brain and Spinal Cord
- 3. Types of Tumors
- 4. Telling Your Child and Others
- 5. Choosing a Treatment
- 6. Coping with Procedures
- 7. Forming a Partnership with the Treatment Team
- 8. Hospitalization
- 9. Venous Catheters
- 10. Surgery
- 11. Chemotherapy
- 12. Common Side Effects of Chemotherapy
- 13. Radiation Therapy
- 14. Peripheral Blood Stem Cell Transplantation
- 15. Siblings
- 16. Family and Friends
- 17. Communication and Behavior
- 18. School
- 19. Sources of Support
- 20. Nutrition
- 21. Medical and Financial Record-keeping
- 22. End of Treatment and Beyond
- 23. Recurrence
- 24. Death and Bereavement
- 25. Looking Forward
- Appendix A. Blood Tests and What They Mean
- Appendix C. Books and Websites