Fear and helplessness

A diagnosis of leukemia strips parents of control over their child’s daily life. Previ-
ously, parents established routines and rules which defined family life. Children woke
up, washed and dressed, ate breakfast, perhaps attended day care or school, played
with friends, and performed chores. Life was predictable. Suddenly, the family is
thrust into a new world populated by an everchanging cast of characters (interns,
residents, fellows, pediatric oncologists, IV teams, nurses, social workers) and contain-
ing a new language (medical terminology); a new world full of hospitalizations,
procedures, and drugs.
Until adjustment begins, parents sometimes feel utterly helpless. Physicians they have
never met are presenting treatment options for their child. Even if parents are com-
fortable in a hospital environment, feelings of helplessness may develop because there
is simply not enough time in the day to care for a very sick child, deal with their own
changing emotions, begin to educate themselves about the disease, notify friends and
family, make job decisions, and restructure the family to deal with the crisis.
Parents also experience different levels of anxiety, including fear and panic. Many
develop problems sleeping and feel overwhelmed by fears of what the future holds.
Their world has turned inside out—they have gone from adults in control of their
lives to helpless people who cannot protect their child.
Sometimes I would feel incredible waves of absolute terror wash over
me. The kind of fear that causes your breathing to become difficult and
your heart to beat faster. While I would be consciously aware of what was
happening, there was nothing I could do to stop it. It’s happened
sometimes very late at night, when I’m lying in bed, staring off into the
darkness. It’s so intense that for a brief moment, I try to comfort myself
by thinking that it can’t be real, because it’s just too horrible. During those
moments, these thoughts only offer a second or two of comfort. Then I
become aware of just how wide my eyes are opened in the darkness.
Many parents state that helplessness begins to disappear when a sense of reality
returns. They begin to make decisions, study their options, learn about the disease,
and grow comfortable with the hospital and staff. However, feelings of fear, panic, and
anxiety periodically erupt for many parents at varying times throughout their child’s
treatment.
A friend who had lost her husband to cancer called soon after my
daughter’s diagnosis with acute lymphoblastic leukemia (ALL). I told her
that I felt helpless, confused, overwhelmed, and teary. I cried, “When will
I be my usual competent self again?” She assured me that the beginning
was the worst, but to expect to be on an emotional roller coaster for the
entire two years of treatment. She was right.