This is purely a personal decision, influenced by ease of communication within the family, age and temperament of the child, religious beliefs, and sometimes physician recommendation. Young children (ages 1 to 3) primarily fear separation from parents. The presence of strangers in an already unfamiliar situation may cause additional fear. Many parents tell their small child in private, while others prefer to have a family physician, oncologist, social worker, clergy, or other family members present.
Older children (4 to 12) sometimes benefit from having the treatment team (oncologist, nurse, social worker, or psychologist) present. This may create a feeling that all present will unite to help the 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 that they did wrong. Social workers and nurses can help explore unspoken questions, provide reassurance, and identify the needs of parents, the sick child, and siblings.
My 6-year-old son Brent was sitting next to me when the doctor called to tell me that he had leukemia. I whispered into the phone, "What should I tell him?" The doctor said to tell him that he had a disease in his blood and needed to go to a special children's hospital for help. As we were getting ready to go to the hospital, Brent asked if he had AIDS (it was right after Magic Johnson's announcement), if he was going to die, 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 Brent first, and answered all his questions before talking to us. When Zac (Brent'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 Brent later confided to me that he had first thought he got leukemia because he hadn't been drinking enough milk.
Adolescents' need for control and autonomy should be respected. Teenagers sometimes feel more comfortable discussing the diagnosis with their physician in private. At a time when teens' developmental tasks include becoming independent from their families, they are suddenly totally dependent on medical personnel to save their lives and on parents to provide emotional support. 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 leukemia helped to forge closer bonds between teenagers and their parents.
When my daughter went into the hospital to get the mediastinal mass diagnosis done, 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 really didn't know 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. My daughter has continually told me over the years if the doctor had not always talked with her in our presence, she would have felt like she was dying.
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, children and parents will experience a variety of emotions..
We've really marveled as we watch Joseph go through the stages of coping with all of this just as an adult might. First of all, when he was diagnosed in April, he was terrified. Then in May and June 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 fifth birthday on July 26th, he'd made the transition to where he is now: hopeful and committed to "killing the cancer"
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