Childhood Cancer

Childhood Cancer

Telling your child

It is important to provide age-appropriate information soon after diagnosis and to create a supportive climate so your child begins to understand what is happening and feels 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

Our daughter was 8 at diagnosis. She had emergency surgery to fix a “twisted” ovary, which turned out to be an ovarian germ cell tumor. The surgeon removed the mass and our daughter’s ovary along with it. We got the initial pathology before we left the hospital, but wanted to wait for final pathology before we told her of the cancer diagnosis. We took our daughter to her regular pediatrician the next week and gave her the news. I told her the surgeon found cancer on her ovary and took it out, but she would need special medicine called chemotherapy to get rid of any cancer that was left. Our daughter loves her pediatrician so we thought it would help to tell her with him so he could answer questions and reassure her. We were honest with her and she handled it very well.

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 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.

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.

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 how comfortable he is in his current environment. If your child is very ill due to the cancer or has had to be rushed to surgery, this conversation may need to take place in the hospital at a quiet time. In most cases, however, you will be able to gather your thoughts after receiving the initial diagnosis and talking with the medical team about the best way to explain the diagnosis to your child.

Some parents tell their child in private, while others prefer to have a family physician, oncologist, social worker, member of the clergy, or other family member present. Most children’s hospitals have child life specialists who can help explain the diagnosis and treatment to young children in an age-appropriate manner. 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, 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 booboo, 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 the pain or bandages, 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 (oncologist, nurse, social worker, child life specialist, or psychologist) present when told about their diagnosis. It promotes 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 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, child life specialists, and nurses 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 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 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.

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 tumor and sometimes she said I’d saved her life.

It is not always possible to control how your child or teen finds out about the cancer diagnosis, especially if you find out at the same time she does. Finding out about the cancer abruptly or with little warning can be difficult, but be assured that both you and your child can recover from this upsetting experience by gathering more information and building a trusting relationship with the medical team.

We were told that Kasey (age 13) had a massive sinus infection that was resisting treatment, and on Thursday they had taken a biopsy of the infection to determine what antibiotic to use on it. On Sunday, we were an hour from home, leaving my daughter’s soccer game. The ENT [ear, nose, and throat doctor] called from the children’s hospital while the girls and I were sitting in the car waiting for my husband to pack up the last of our things. She didn’t ask me where I was or if I was alone, she just said “Your daughter has cancer and you need to come in tomorrow.” We had never suspected cancer. I jumped out of the car and just yelled it to my husband. He got on the phone to talk to the doctor and fell to his knees on the sidewalk. Kasey came to us saying, “What is going on?” So we told her there on the sidewalk. We couldn’t keep that from her when she saw we were so upset.

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 for 3 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, 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 in late July, 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 body 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 cancer, 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, “A tumor is growing in your arm 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 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.

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 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.

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 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.

My husband died after battling brain cancer for 2 years. My older son was in remission from osteosarcoma when my 16-year-old son was also diagnosed with osteosarcoma. It made telling my younger son about his cancer especially difficult and complicated. I decided to have the orthopedic oncology surgeon tell him while I was in the room. The surgeon then took the time to build him up and give him the confidence to move forward by telling him that he “could see the fight in his eyes.” My son held on to that for his entire treatment.

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.

Will was 13 when he was diagnosed with osteosarcoma. When we were called into the doctor’s office to go over the MRI, Will and I were together and the doctor spoke to both of us at the same time. I was impressed that the doctor looked at both of us while speaking. I don’t remember exactly how much he spoke directly to Will, but he did listen to both of us and answer the questions we had. He did not in any way ignore Will. The most important thing to Will was the truth. He wanted to know everything: the good, the bad, and the ugly. Not all of the information was given at one time, but was shared as questions came up. We never sugarcoated anything and we didn’t try to stop Will from reading anything. I don’t honestly know how much he read or researched on his own; I’ve never asked. Will and I were inseparable from the moment we got to the hospital, so it was only natural that we would hear things at the same time.

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 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.”