What you can do
Some practical things that you can do to help during
this time include the following:
- Learn as much as possible about your child’s disease.
Your primary source of information should be your child’s physician and health
care team. They can provide you with additional written or electronic
educational materials that are accurate and reliable. At times, ignorance or a
lack of understanding is your worst enemy. Arm yourself with information in
order to lessen frustration. Do not hesitate to ask questions about your
child’s disease. You may wish to keep a notebook with all of the medical
records and information about your child’s diagnosis. Sometimes, a parent can
be too numb or too upset when at the hospital with their child and realize
later that they forgot everything the physician had said.
- Keep a journal of your feelings about your child’s disease and the
impact on your life. As time goes on, you will be able to look back
and see that things are improving and that you are moving forward, even though
at times it may not seem so.
- Learn about your health benefits so that you understand what
expenses will be covered by insurance.
- Continue doing your usual, daily activities. You will
still have grocery shopping, laundry, and going through the mail to do on a
daily or weekly basis. Having some of these "regular" activities will help you
cope and feel more in control. Using a cell phone or beeper to communicate
with the hospital is one way to accomplish these activities and still be in
touch with what is happening with your child.
- Take care of your family relationships. Although your
primary focus is on your child with cancer, it is important to also spend time
as you normally would with your other children and your spouse. It is healthy
to have fun together, even when a child in the family has cancer. Relieving
stress and strengthening family relationships will allow you to cope better
with your child’s disease.
- Utilize the support groups in the area, as well as national
support groups and their resources. Find out about supportive
services available at the hospital to help you cope, such as the availability
of social workers and/or meeting with other families. Do not be afraid to ask
for help. Each family’s need for support is unique. Friends and family members
will often ask "Is there anything I can do to help?" Consider saying "yes" to
this question and ask them to pick up your groceries, help with the laundry or
housecleaning, pick up your other children from their extracurricular
activities, or make dinner. "Assigning" a friend or family member something to
do to help you will also help them feel like they are contributing.
- Avoid emotionally draining situations. Sometimes,
well-meaning friends and family members will say the worst possible thing at
the time of a cancer diagnosis. They truly want to help or be supportive, but
sometimes do not know how to respond. Their words may hurt you or disappoint
you, even though that was not their intention. You must realize that people
will not know what your needs are unless you tell them. Sometimes, it is
simply easier to be forthright and tell someone "I would just like you to sit
quietly with me and keep me company" or "I need to spend some time alone right
now." Do not be afraid to express your needs during this time. Other parents
or acquaintances may want to talk to you about their experiences with cancer.
They may believe that they are being helpful to you, but instead may be making
your situation feel even more overwhelming. It is important for you to avoid
these discussions if they are not helping you. It is healthy to be "selfish"
and ask for what you need, as well as what you do not need during this time.
- Share what you have learned. You will have important
knowledge and skills that you learn as you experience your child’s illness.
You could help other parents and their families by sharing your experiences in
a support group or other setting.