Childhood Cancer

Childhood Leukemia

Telling Your Child

Children and teens need age-appropriate information soon after diagnosis to create a supportive climate and help them begin to understand what is happening and feel comfortable asking questions. 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 are given age-appropriate explanations. Your child needs to know what is happening now and be prepared for 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. Remember that sharing strengthens the family, allowing all members to face the crisis together.

When to tell your child

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. It’s nearly impossible for children to make sense of their new world without an explanation: they’re in a strange place, none of their normal activities continue, strangers are performing scary and painful procedures on them, their parents are upset, and they see sick children everywhere they look. They may not talk about their fears, but they know something is very wrong.

We felt we had to tell our 4-year-old daughter 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 would grow back. 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.

The most loving thing a parent can do is to tell the truth before the child is overwhelmed by 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 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.

We feel that you have to be very honest or the child will not be able to trust you. Meagan (5 years old) has always known that she has cancer and thinks of her treatments and medications as the warriors to help the good cells fight the bad cells.

Who should tell your child

You can decide who should first talk to your child about the cancer, based on his age, level of understanding, and whether you think your child would rather hear this news from you or the doctor. This conversation usually takes place in the hospital at a quiet time soon after diagnosis. Generally, you’ll have time to talk with the medical team about the best way to explain the diagnosis to your child.

Some parents tell their child in private. Others prefer to have the treatment team (oncologist, nurse, social worker) present when explaining the diagnosis; this may help show that everyone is united in their efforts to help your child get well. Most children’s hospitals have child life specialists who can help explain the diagnosis and treatment to young children in an age-appropriate way. Often, they use age-appropriate materials (e.g., books, pictures, dolls) to help with the conversation. Staff members can answer the child’s questions and provide comfort for the entire family.

Children sometimes 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, and child life specialists can help explore these concerns 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 two 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 most teens are becoming independent, teens with cancer are suddenly dependent on medical personnel to save their lives and on parents for emotional support. Teenagers sometimes feel more comfortable discussing the diagnosis with their physician in private. In some families, a diagnosis of cancer can force unwelcome dependence and add new stress to the already turbulent teen years. Other families report that the illness helped forge closer bonds between teenagers and their parents.

Children and teens react to a cancer diagnosis 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 experience a variety of unexpected emotions.

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 for three 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!” Over the course of a few weeks, he seemed to calm down and made the decision to fight it, cooperate with all the caregivers as well as he possibly could, and 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 in late July, he’d made the transition to where he is now: hopeful and committed to “killing the cancer.”

What to tell your child

Children need to be told that they have leukemia and what that means, using words and concepts that are appropriate for their age and level of emotional development. The sooner they are comfortable with the word leukemia, and with the name of their disease, the less mysterious it will seem and the more powerful they will feel as they deal with it. Very young children might be satisfied to hear, “Leukemia is a disease that makes part of your blood sick, and we need to go to the hospital for medicine to make it better.” Older children may benefit from reading books alone or with a parent, reading information on reliable internet sites, or asking members of the treatment team questions to get the information that matters most to them.

Older children and teens may have some knowledge of cancer, which might mean they will need a more detailed explanation of their cancer and how it is treated. They may also have a lot of worries, fears, and misconceptions. Providing them with encouragement and reasons to feel optimistic and empowered is as important as making sure they have accurate information.

When my daughter went into the hospital to get the mediastinal mass diagnosis, I told her doctor if she got a bad report that I wanted him to tell her father and me and not give her any such news. Her doctor, who I had never met before this encounter, informed me that she was 15 years old and would be the one dealing with cancer and it was very necessary that she be told everything and that nothing be kept from her. I thought that was so mean of him, but I liked him and had never shown any disrespect for a doctor before, so I decided since he had dealt with kids with cancer before and I hadn’t that he must know something I didn’t know. He did! There have been so many times I have been so thankful that he had the wisdom to tell me that right off the bat.

It is important to share the name of the disease and an age-appropriate description of it with your child. Here are some other key concepts to talk about:

  • No one knows what causes cancer, and it is not the child’s fault she got sick.
  • Some things about cancer 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 your 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, and your child did not catch it from anyone.
  • Cancer is caused by cells that grow the wrong way, and it is no one’s fault.

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 cancer, 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.

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My daughter Kathleen Rea knew she had cancer when she was three. She knew that her motor oil wasn’t running her engine right—but she called it cancer. Young children need to be reassured that they did nothing to cause the disease. It is important that they understand the disease is not contagious and they cannot give it to their siblings or friends. They need to have procedures described realistically, so that they can trust their parents and medical team.

Children will have many questions throughout their treatment. Parents must assure their 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.

When I told Christine (3 years old) that she had a disease in her blood, I told her I would always be with her, and that I would make sure that there were never any surprises. (This is difficult sometimes in the hospital setting, but it can be done.) She is very artistic and wanted me to draw a picture of the cells that were a problem. We drew lots of pictures of white cells being carried off by chemo drugs to be “fixed.” Although many of the other parents successfully used images of good cells killing off bad cells, I thought that would upset my extremely gentle daughter. So we imagined, drew pictures, and talked about chemo turning problem cells into helpful cells.

When your child asks a question, take a moment to be sure you heard and understood it correctly, and then formulate a thoughtful answer 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 a superficial answer or answer a question the child did not ask; but doing so can increase the child’s confusion and undermine 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.”