To cope with the child's illness and the changes this brings in
your own life, you may want to consider the following
- Make a special effort to find private times to communicate with
your spouse, or if you are a single parent, with others close to
- Don't allow all your discussions to revolve around the sick
- Make time to do things you enjoyed doing together before your
child became sick.
- Find ways to reduce the frustration you may feel when clinic
visits require waiting for procedures, test results, or
consultations with physicians. When your child is hospitalized, try
to make it as easy on yourself as possible. Bring something to read
or do while the child is sleeping or doesn't need your individual
- If work schedules permit and the distance between hospital and
home is close enough, you and your spouse may alternate staying
with the hospitalized child. Weekends may be a good time for a
switch: the parent who has been at home or work can stay at the
hospital, and the other parent can spend time at home with the
other children and rest. This also allows both parents to become
familiar with the child's life in the hospital and various aspects
of treatment. It reduces the gap that may grow between parents when
one becomes much more actively involved in the treatment than the
- If you are a single parent, other family members or friends who
are close to the child may be able to stay at the hospital
occasionally so you can rest.
- Don't hesitate to turn to treatment staff for support. Most
treatment centers have psychologists, social workers, nurse
clinicians, or chaplains available to talk about special
You may want to look for other sources of support. Talk to other
parents of children with cancer informally in the hospital or
clinic. Your treatment center may have a parents' group supervised
by a staff member for more formal discussions. In addition,
organizations outside the center may also exist. Such groups may
provide support and information on how others have dealt or are
dealing with situations you are facing. One national group, the
Candlelighters Childhood Cancer Foundation
chapters. Treatment center staff may be able to help you locate
such a group.
A diagnosis of cancer affects not only the patient's parents and
siblings but also the grandparents, other relatives, and family
friends. Ideally, these people can provide
. They can babysit and spend time with the
siblings, stay with the sick child to relieve you, or assist in the
many practical problems that arise when a household must continue
to function under stress. Unfortunately, they are not always able
to do this.
Grandparents may feel particularly lost and helpless, because
they are concerned about their grandchild and at the same time
cannot stop the suffering of their own child.Treatment team members
may be helpful; they can explain the child's condition to the grand
parents. Being allowed to participate in meetings of parents'
groups may also help grandparents deal with their feelings about
the child's illness.
Each family has its own way of relating to relatives, friends,
and neighbors. Above all, initial honesty is of real value in the
long-term handling of any problems. People want and need to help,
but they may need assistance from you to do so. They will need
information about the disease and its treatment. Some may have to
be told such basics as the fact that cancer is not contagious.
In general, you and your sick child must take the lead in
showing others how you want to be treated. You may need to point
out to family and friends that too much attention or indulgence
does not help the patient. For yourself, you may need to show
others that you want to be treated as you were before, and although
your time may be limited, you would like to be included in
activities you previously enjoyed together.
Your employers may also need to be told about your child's
sickness so they can understand the reason for requests for time
off from work. If you feel it is necessary, the child's doctor may
write your employer and explain the situation. Finally, in their
efforts to help, people will give all sorts of advice. If their
comments are confusing or upsetting, make a point of discussing
them with medical personnel.
The cost of your child's treatment may cause additional pressure
in an already tense situation. The desire to have the best in care
may be offset by fear about the costs and how they will be met. As
soon as financial questions arise, ask your doctor or the social
worker for help. Because health and life insurance questions can
influence major health decisions, you'll need a clear understanding
of the coverage your policies offer. Caregivers, particularly
medical social workers,
can clarify individual policies and
help you fill out forms.
You should also keep complete records; store your
together for easy reference at tax time.
Keeping track of bills, your payments, and insurance payments by
date and type of charge will simplify this further. Treatment
center staff may also be able to help you with other costs
associated with cancer treatment. Check with them to see if you are
eligible for special rates for parking or food at the hospital. If
your child is hospitalized or needs daily treatment away from home,
lodging costs for parents may be substantially reduced if a Ronald
McDonald House is available or other special arrangements have been
made. Medical social workers may be familiar with other programs
such as those of voluntary cancer related organizations or state or
local programs, that may be able to assist you.
The National Cancer Institute,
Please be aware that this information is provided to supplement the care
provided by your physician. It is neither intended nor implied to be a
substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER
IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the
advice of your physician or other qualified health provider prior to
starting any new treatment or with any questions you may have regarding a
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