Telling your child

In the first harrowing days after a diagnosis of leukemia, parents must decide when
and what to tell their children. Because parents are coping with a bewildering array
of emotions themselves, sharing information and providing reassurance and hope
may be difficult. In the past, shielding children from the painful reality was the norm.
Most experts now agree that children feel less anxiety and cope with treatments
better if they have a clear understanding of the disease. It is important to provide
age-appropriate information soon after diagnosis and to create a supportive climate
so that children feel comfortable asking questions of both parents and the medical
team. 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. It is impossible to
prevent a child from knowing that he is seriously ill. The child has been whisked to an
unfamiliar hospital by frightened parents, endured painful tests, and received drugs
and transfusions. Cards and presents begin to arrive, and friends and siblings are
absent or behave in a strange manner. The child may meet other children with a
variety of physical problems at the hospital.
Delay in providing age-appropriate information escalates the child’s fears. Well-
meaning parents may cause great anguish by isolating their child in a conspiracy of
silence. Parents may delude themselves into thinking that the diagnosis is a secret,
but children are extraordinarily perceptive. They frequently keep their thoughts and
feelings to themselves in order to protect their parents from more pain. In this case,
not only must the child deal with having cancer, but he must do it on his own with
no one to console him. Lacking accurate information, children can imagine scenarios
far more frightening than the reality.
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
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 (oncolo-
gist, 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 some-
times 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.”