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Explaining cancer treatment to children can be a tough job.
The parent already feels anxious enough without worrying about how
their child will react to their treatment, too. A lot of progress is
being made in cancer treatment, but the person with cancer's first
response is usually fear and uncertainty about the future.
Years ago, people often tried to keep a cancer diagnosis a
secret, which only made coping with the illness harder for them, their
family, and their friends. Today, we know it is impossible to keep
having cancer a secret and that trying to keep such a secret only harms
you and those you love. The challenge is blending cancer and its
treatment into a family's everyday life. This includes helping children
deal with the major disruption it causes. If you need to know more
about how to explain a cancer diagnosis to children, see Helping Children When a Family
Member Has Cancer: Dealing with Diagnosis.
Here we will focus mainly on talking with children when a
parent has cancer, but you can use these ideas when another adult loved
one has cancer. If a child in the family has cancer, you may want to
read Children
Diagnosed with Cancer: Dealing with Diagnosis.
Why tell children about the cancer
treatment?
Children sense problems and imagine the
worst
Children will often imagine the worst if they are not told
what is going on. They see a tired parent who may have less patience
with them and who feels sick a lot, and may think that the parent
doesn't love them or that they've caused the parent's illness. Even
very young children will sense that something is wrong. Once children
have come up with their own explanation about why something is
happening, it can be very hard to change their minds.
Children are likely to find out anyway
You probably know that children often hear adults talking
about subjects not meant for them -- even when the child is busy and
doesn't seem to be listening. Some kids even look for ways to listen
without being noticed if they think something is being kept from them.
When children overhear these conversations, to them it confirms that
adults are keeping things from them. Even if they don't hear anything,
they can see that others are acting strange and usually sense that
people are upset and something is wrong. They may even think that
something they've done or not done caused the problem.
Side effects will be obvious once treatment
begins
When the parent's treatment starts, the child may see side
effects such as tiredness, weight changes, hair loss, or vomiting, and
believe any number of things. They see that the parent is sick and may
think that he or she is going to die. They may think that others in the
family will get sick, too. Not knowing what is going on or how to cope
with it can be terrifying to a child.
It takes energy to keep secrets
Finally, the effort it takes to keep such secrets may rob the
parent of
precious energy, too. This energy can be put to better use by making
children feel safe and prepared for the changes that will happen in the
family. Parents need to explain cancer and its treatment in words that
a child can understand.
If the adults don't bring it up, the children may assume that
they are not allowed to talk about it, and come up with their own
reasons no one has told them. To avoid this, children need to be told
in advance about the kinds of side effects that are likely to happen
during cancer treatment.
What do children need to know about a
parent's treatment?
Children need to know enough to be prepared for what is about
to happen to their parent and how it will affect them Young children
(ages 2 to 8) do not usually need a lot of detailed information about
cancer and treatment, but older children (ages 9 to 12 and teens) need
and deserve to know more. All kids need to know the type of cancer (for
example, breast cancer or lymphoma), where the cancer is located in the
body, what will happen with treatment, and how their lives will be
changed by the cancer. If the children have not been told these basic
facts, this should be the first priority. (See Helping
Children When a Family Member has Cancer: Dealing with Diagnosis
to learn more about talking to children at the time of diagnosis. You
can find out more about opening the channel of communication so that
you have a way to talk with the children, as well as hear their
concerns, during and after cancer treatment.)
Children need to understand some basic terms about cancer. We
have defined some of the more common words in the section "Words to describe
cancer and its treatment."
How much should I tell my children about my
treatment?
What you tell your children depends on many things, such as
their ages, personalities, and what you know about your treatment. You
need to find the right balance between too much information, which
could be overwhelming, and too little information, which might raise
more questions. After talking about what cancer is and where it is
located, children should be told how it might affect you and them. This
discussion should include how their lives may change as a result of
your treatment, and what plans you've made to be sure that they are
cared for.
People sometimes talk about cancer and its treatment as if all
cancers are the same for everyone. But that is not the case. Different
kinds of cancer behave differently and require different treatments.
And people react differently to the same treatment. Make sure your
children understand this.
If you are going to lose your hair, tell your kids so they
will not be afraid when it happens. If you will be in the hospital,
children need to know where, for how long, what is going to happen in
the hospital, whether they can visit or at least call, and who will
take care of them. People are often anxious during treatment, so
children should be told that Mom or Dad might be a bit "grouchy" or
irritable, but that it is not their fault.
The goal is to tell the truth in such a way that children are
able to understand and prepare themselves for the changes that will
happen in the family.
How do we handle all the changes?
It's important to know that when someone becomes very ill, the
person and their loved ones may feel angry, sad, or afraid. This may be
noticed when the patient is feeling sick and can't carry on with his or
her usual responsibilities and roles. The other parent may be exhausted
and maybe not as aware of the children's needs. Some kids react to this
by withdrawing or being afraid they will burden their parent with their
own worries. Others may actively misbehave as a way of making sure they
get attention. Whether the behavior is a reaction to the cancer
diagnosis or something else, you still need to address it. It is easy
to understand that a child may be upset about what is going on, but
basic rules of behavior should still apply. It is important to try to
keep routines as much the same as possible, and to be consistent with
the children. Keeping the same rules makes children feel safe. They may
feel things are even more out of control if they find they can suddenly
"get away with anything."
Children usually have a tough time finding the words for what
they feel when a parent is being treated for cancer. Anger is hard for
most people to talk about. But it is a normal emotion when life seems
turned upside down. In general, the more honest family members can be
with one another, the better. Talking about how you feel is one of the
best ways to diffuse the tension that families are feeling. If you find
that you don't have as much time for your kids as you might like, think
about asking another person, your spouse, or other trusted relative or
friend, to spend time with your children. Try to talk about treatment
in a positive way if possible, rather than dwelling on all the
distressing or negative side effects. Be sure your children know that
you are still the same person inside you always have been –
even if you are
bald, or tired, or sleep more – and that you love them just
as much as you ever have.
How can I tell if my child knows enough
about my cancer treatment?
Young children need less information than older kids. They are
also more likely to be confused by the information they are given. They
may be able to repeat what you told them back to you but still not
understand it. One mother who talked about surgery for "cancerous
tissue" in her lung reported that her children thought she had Kleenex®
in her body. You and other caregivers can use play and art to help the
child understand what's happening. It will also help to give the child
some time each day to ask questions, such as at bedtime or during
breakfast. You may need to repeat explanations many times before the
child begins to understand.
Children, especially those under age 12 or so, may feel guilty
and be afraid that they somehow caused the cancer. This is the result
of the way that children think before their thought processes mature.
They should be assured that nothing they thought, wished, said, or did
(or didn't do) caused their parent's cancer or the side effects of the
cancer treatment. You may have to explain this more than once,
especially to younger children.
Children often don't understand the severe tiredness (fatigue)
which is a common side effect of treatment. They may expect that mom or
dad will bounce right back after the last treatment. In reality, this
profound fatigue may go on for months. It is a good idea to explain
that cancer treatment side effects may last for a while, including
periods of active treatment during which drugs and/or radiation
therapies will be given. There may not be new information to report but
assure your children that you will tell them what they need to know,
when they need to know it. Any time you talk with your children about
your cancer, always ask them if they have questions or if there is
anything else they want to know.
Children also learn about cancer from other sources
– from school, from television, from their classmates, and
from listening to other people talk. Some of this information is
correct but a lot of it is not, so a child must sift through the
information with their parents. Ask your children to tell you what they
have heard about cancer so you can correct any wrong information they
have. Tell them that everyone responds to cancer treatment in their own
way, so sometimes it really doesn't help to compare one person's cancer
or treatment to another's.
There are also certain myths about cancer and its treatment
that your children may hear. Some examples are: "all people die from
cancer," "cancer is contagious," "exposing cancer to the air during
surgery makes it spread," and "radiation treatment makes people
radioactive." None of these statements is true, but there are people
who strongly believe them. If your child can't talk openly with you
about cancer, he or she may worry about these myths for no real reason.
If your child wants to know more about cancer, please see the
"Additional resources"
section. You'll find toll-free numbers there to
call for the most up-to-date information.
What if my child starts acting differently
after I start treatment?
If your child still has questions after you have explained the
cancer treatment, there may be other issues that are causing distress.
Talking with a professional counselor may help. Watch your child's
behavior. Acting out, worrying constantly, fighting, or not being able
to focus, may point to a need for professional help. Parents usually
know how their children normally express distress. Typical behaviors
that are much worse may mean your child is troubled.
Sometimes when children have trouble talking about how they
feel, a cancer care professional or child care specialist may help them
open up about their fears or sadness. Since these experts know how
other children have reacted to illness in the family, they may be able
to offer a useful way of looking at the problem.
Although most children who have a parent with cancer seem able
to cope, there are times when it gets to be too much. If a child seems
to be having trouble, it may mean a more serious problem than a normal,
sad response to cancer. Extra help is needed if a child:
- is unable to handle the feelings of sadness
- feels sad all the time
- cannot be comforted
- admits to thinking of suicide
- feels extra irritable
- becomes very angry very quickly
- has changing grades
- withdraws or isolates himself or herself
- acts very differently from usual
- has appetite changes
- has low energy
- shows less interest in activities
- has trouble concentrating
- cries a lot
- has trouble sleeping
If the usual methods of handling these problems are not
working, or if the problem goes on for more than 1 or 2 weeks, the
child may need special help. (For more serious problems, such as if the
child is planning to hurt himself or herself, urgent help is needed.)
Talk with the child's pediatrician, school counselor, or with
the social worker or counseling staff at the hospital where the parent
is being treated. They can evaluate the child and make sure that any
needed help is given. Rarely, a child may need to see a psychiatrist
for medicine or counseling. (For more on mental health professionals in
cancer care, please ask for Children with Cancer in the
Family:
Understanding Psychosocial Support Services.)
Can I expect my children's lives to go on as
before?
As much as you hope it would be possible, it is not realistic
to expect life to be the same as it was before cancer. No matter how
you may feel about the treatment, having cancer is still a major
crisis. You may feel anxious about what your future holds. Be aware
that life probably will not feel "normal" again for some time. This
does not mean that life will be changed forever in a bad way or that
your children's lives will be ruined. Many people say that having
cancer resulted in some good changes for their family. People do learn
to live, even thrive, with cancer. The challenge is learning what works
best for your family.
It can be hard to figure out how children can be involved in a
parent's cancer without it taking over everyone's life. One of the best
ways to do this is to sit down and talk with each other about how
everyone is doing. Make a plan as a family to figure out how to meet
the challenge of changes in family routines. Setting up a regular time
for family meetings can be a good idea. Let your children call meetings
when they need to. Family meetings are a nice reprieve if they involve
topics other than cancer, too. Use these meetings as a way to gauge
everyone's feelings. Do some chores need to be reassigned because of
school demands? Is there a special event coming up that the family
should plan for? Who needs a pat on the back for making an extra
effort? What new information do your children need about the treatment?
Try to have back up plans for any changes to your family
routines that would be needed to deal with unexpected events. Making
lists of tasks to be done and assigning each of them to a family member
will help life run more smoothly. Regular family meetings can help the
family solve problems before they become huge and can help relieve
tension by airing small concerns. Concrete problem-solving makes
everyone feel less hopeless.
Even if you have family meetings, it will still be important
to check in with each child on a regular basis. Sometimes there will be
issues or feelings that they may not want to bring up in front of
brothers and sisters.
How can relatives and friends help my
children?
Some families are lucky to have a large network of people to
call on for help. If you do not have this resource, an oncology social
worker or nurse may be able to connect your family to community
resources that can help fill the gaps. Sometimes the issue is not
finding help, but feeling OK in accepting it. Many people hate feeling
like a burden to others and would prefer to solve all of their problems
alone. If you are one of those strongly independently people, this is
your chance to learn that accepting help can be good both for you and
for those who give it. Cancer is a major illness, and no one can, or
should, try to "go it alone."
People who want to pitch in are often most helpful with your
children. Look at your children's activities. Some examples include
getting to and from music lessons, being picked up at school, or having
a sleepover. Make a list of these errands and tasks, and decide which
of these a friend or relative could help with. Ask your friends to be
honest and tell you if the request is something they can do. Then let
people help. Your friends and relatives will feel good knowing they are
helping, and you can feel good about your children keeping their
regular routines. Prepare your children for these changes, and tell
them that they are only until you feel better again.
Sometimes friends or family may make things harder because
they don't know how to help. Patients may discover their friends
withdraw from them because they are afraid of saying the wrong thing.
Break the ice by telling your friends it's OK to ask about your cancer.
If you don't want to talk about it, you can tell them that as well.
Should the child visit the hospital or
clinic?
Generally it is a good idea to take your child to the office
or clinic at some point. This may not always be allowed -- especially
for children under 13 -- so, plan this kind of visit in advance. Talk
with your nurse or social worker, who might be able to schedule extra
time to spend with your child to explain what they see and answer any
questions. Having your child see where you go and what happens there
helps clear up the mystery. Most treatment takes place in the
outpatient setting and children may feel reassured when they see what a
treatment is really like and that their parent gets through it without
problems. You may want to schedule your child's visit on a day when you
are able to predict the outcome of the visit. For example, if you
routinely feel ill from chemotherapy, it would be best to save a
child's visit for a regular doctor check-up visit instead.
Visits to a hospital unit may scare children more since people
are often sicker when they are in the hospital. Again, there may be age
restrictions, so find out the hospital policy before making this offer
to your kids. It is best to plan this type of visit when the parent
feels up to it and can talk and laugh with the child in a normal way.
And, you may want to plan an activity for the child and parent to do
together so that the child sees the visit as a happy one. It is helpful
to have a nurse there to explain the strange-looking equipment or any
procedures. All staff can help children feel safe and confident about
the people who provide most of their parent's care.
What should I tell my child's school about
my illness?
Each family differs in their comfort level with giving out
information about a patient's illness. Some people want everyone in
their lives to know, while others tell only a chosen few. Most people
try to strike a balance in between. Try to think of your child's school
as your partner in keeping his or her life as normal as possible. If
your child is having problems dealing with your diagnosis or treatment,
teachers and school staff will probably notice the signs in your child.
Talk to your child's teacher or guidance counselor. They don't need all
of the details about your illness and treatment, just enough
information to understand what your child is going through. Some
children behave badly, some have trouble concentrating, their grades
may suffer, or they may seem sad or withdrawn. Some kids act agitated,
or begin to have physical complaints like an upset stomach or
headaches. If these reactions occur in the classroom, it will help your
child if the school staff is well-informed, know your situation, and
can use the chance to help your child.
Your child's teacher also can be helpful if other children ask
questions about your illness or in some way make life harder for your
child. Children may not mean to be cruel, but sometimes they are not
mature enough to know what is all right to talk about openly and what
is off-limits. If the teacher has some basic information, he or she can
help answer questions as they come up.
What if people ask my child about the
cancer?
You might also prepare your children for questions and
rehearse with them what they might say when people ask questions about
their mom or dad that they don't want to answer. Questions about a
parent's cancer can put kids on the spot if they are not prepared for
them.
If kids at school ask about the cancer, here are some ways
that your children can respond to questions they'd rather not answer:
- Maybe you can ask the teacher or the nurse about
that.
- Thanks for asking, but it's kind of hard to talk
about this at school.
- I don't know the answer to that question.
If adults or family friends ask about the cancer:
- Thanks for asking, but I'm not sure how to answer
that.
- You might want to ask Mom or Dad (or name another
adult family member).
- I don't know the answer to that question.
The child may want to follow up in a friendly way with talk
about school or an offer to play if another child is asking. Or they
can bring up a new subject not related to the cancer.
What if my child seems upset or embarrassed
about the treatment side effects?
Children are going to react to the physical changes that your
treatment causes. And children's reactions tend to be unfiltered and at
times brutally honest. Trying to prepare them can help, but when the
changes are staring all of you in the face, it can be a shock.
Hair loss is a good example. No matter how well you think your
children understand that this may happen, when it finally does, they
will react. Hair loss is such a dramatic event that many people react
negatively at first. Looking in the mirror is a constant reminder for
you that life is not the same. The way you react will affect the way
your child will react. Although both you and your child may be upset
about your hair loss, try to balance those thoughts with a reminder
that the purpose of the chemotherapy is to get rid of the cancer cells.
Although you look very different, most people think it is worth it if
the treatment works. You can admit to your kids that losing your hair
is upsetting, but if your children see you accepting the hair loss,
they will accept it, too.
Children can be quite sensitive to the way others react,
especially their peers, who are probably very curious about what is
happening. This may be harder for teens than for younger children,
since teens tend to think constantly about appearance and are afraid of
looking foolish or being different. With a little advance warning, it
will be easier for them to accept changes in how you look. Talk to them
about what they can say if their friends start asking questions about
your health. Assure them you will try your best to help them feel as
comfortable as possible until things get back to normal.
How do families deal with the uncertainty of
not knowing if treatment has worked?
Dealing with the unknown can be the hardest part of dealing
with cancer treatment. Your natural desire is to tell your children
that everything will be fine. But you really can't do that until some
time has passed. Because cancer can recur (come back) or grow in
another part of the body (metastasize), you may have to wait quite a
while after treatment to know what to expect in the future. Young
children might not understand this. Children tend to see things just as
they are. If your treatment is finished and you look good again, they
will probably think that the illness is over.
You may find that you have trouble relaxing and moving on
after treatment. You may feel as if you need to wait until you know for
sure that the cancer is most likely gone for good. Everyone hopes that
the end of treatment will be the end of cancer. And you probably want
everyone to feel hopeful and get on with life. Be honest about your
feelings and tell your kids positive things that are true. For
instance, tell your children that you are relieved to have treatment
behind you, or you're anxious for your hair to grow back, or you're
glad that you won't have to be away from them as much now that
treatment is done. You can let them know that if the cancer does come
back, treatment will start again, but for now you'd just like try to
enjoy the present. If you would like to learn more about dealing with
your uncertainty after treatment, please see Living with Uncertainty:
The Fear of Cancer Recurrence.
For most young children, this kind of open, positive talking
is all they need to begin putting the cancer behind them, especially
when you are looking and feeling better. Still, some children worry
more than others and may need more talks with you. If you think your
child is worrying a lot or seems to be afraid a lot, you may want to
talk with a mental health expert who works with children. Teens can be
very challenging, since they may often avoid talking openly about their
fears or concerns. Just as parents try to protect their children,
children may not talk about what frightens them because they don't want
to upset the parent. Sometimes it is easier for your children to
discuss their fears with someone outside the family.
Children worry about the worst, and want to
be prepared for it
Even though they may not ask, children will wonder who will
take care of them if a parent dies. People newly diagnosed with cancer
may not have a plan in place for what will happen to the kids if they
should die. It is important to make those arrangements and to let your
children know about them.
If you do not have relatives or friends who are logical
choices as caregivers, there are social service agencies that can help
designate potential caregivers. This is a painful issue to think about
when you learn you have cancer, but it is something that must be done.
It is one way you can be sure that your children will always be cared
for. If your children are older, tell them that they may have input
about who would become their caregiver.
After you have a plan, you may want help to come up with a way
to bring this up with your younger children, and decide if they are old
enough to understand it. Most school age children (6 or 7 years and
older) are able to understand that a having a back-up plan means that
you are thinking of their well being. Talking to your child about this
is even more crucial if the child has only one parent. The child knows
that you provide all or most of their care, and may not know who would
do it if you weren't around. Again, what the child imagines may be much
worse than reality.
This is a tough talk to have with your child, and you may have
to rehearse a bit before you can do it without getting very emotional
yourself. When you are ready, give yourself some uninterrupted quiet
time with your child. You can open the subject by saying that you know
that children often worry about what would happen to them if a parent
couldn't take care of them, or if their parent died. This lets the
child know that you won't be shocked or upset with them if they ask
questions. You can see how the child responds to this statement before
you explain your back-up plans.
In a divorced family, if the parent who left the home is the
one who is ill, the child may feel less connected to that parent, and
unable to be as involved with the sick parent. Everyone should still
make an effort to keep the child involved with the parent who is ill,
for both the child's and parent's sake.
Is it harder for teens to deal with a
parent's cancer?
Teenagers can be challenging to their families even when
parents are healthy. The task for this age group is to separate from
parents and begin to define themselves as individuals. Watching teens
develop can be a process tinged with worry as they test adult ideas and
behaviors. They often move back and forth between the security of
childhood and the world of adults. When cancer comes up in the middle
of this, family routines change and teens feel that life no longer
revolves around them and their activities.
Cancer means that, at least for a period of time, you will be
less available to your children and have less time with them. Other
people may be helping out and you may not feel as connected to your
kids as you were before. Your energy is divided between your family,
your job (if you're still working), and the physical and emotional
demands of cancer treatment. Teens can help a lot during these times
because they are grown up enough to take on some of the household
tasks. But it's hard to decide what they can do and how to balance what
you need from them with your teen's school and social life. Try to
gauge how much you are depending on your child and recognize when this
begins to feel like a burden or starts to overwhelm your teen. Because
teenagers can "clam up" and try to protect you from worry, they might
not tell you if things are becoming too stressful. They may feel
resentful, angry, and confused about what is happening. They may also
be afraid that the treatment will not work.
Teens still need to invest time and energy in their schoolwork
and maintain their relationships with friends. Staying in contact with
friends may not seem like a priority in light of what the parent is
going through, but these relationships are very important and can offer
your child a much-needed outlet. Ask your teens how their friends
reacted to your diagnosis. Unless they've had cancer in their families,
their friends may not know what to say or do. Teens may describe the
same sort of withdrawal with their friends that you have felt with some
of your friends. Your teen's friends may be asking questions that are
hard to answer. If this is the case, you might be able to suggest ways
that your child can handle these situations, so that he or she can
maintain peer relationships without too much attention to your illness.
Because teens are so aware of their own bodies, they may worry
that they might get sick too. They may worry about catching cancer as
in "catching a cold" or "inheriting the cancer." Teenage daughters of
women with breast cancer may especially worry about having breast
cancer. It is a good idea to discuss these concerns with your
oncologist so you can give your teenager accurate information.
If your teenagers seem worried or unable to share their
concerns with you, check with your hospital about a group for teens
whose parents are in treatment. Or there may be a counselor with
special expertise in helping adolescents deal with illness in their
families. Try to find your teen the help they need to get through this
time.
Cancer changes everyone in the family
The whole family will be affected by your illness, and no one
comes through this experience unchanged. Cancer treatment is quite
stressful at times but it is possible to learn creative and helpful
ways to deal with the changes and uncertainty that you and your family
will go through. You may not have as much time, but parenting can't be
postponed. Your kids need you a great deal during this time, and you
will still need to parent your children through your treatment -- even
when you don't have the energy and don't feel like it. You will need to
guide your children toward accurate information, hopeful ways of
looking at your situation, and healthy ways to cope. There will be
times that your kids don't listen, and that things don't work out the
way you'd hoped. But being a parent means that you will have to make
decisions based on incomplete information, and sometimes you will make
mistakes. In the words of Wendy Harpham, a mom with cancer who is also
a doctor: "There is no one right way to parent. Don't try to be
perfect."
Does having cancer cause special problems in
non-traditional families?
Single or divorced parents
One-parent households can have extra stress when the parent is
diagnosed with cancer. Getting to treatment, getting child care, and
paying medical bills are added to the already heavy load of cooking
meals, car pooling, shopping, and meeting the family's emotional and
survival needs. Adding cancer and feeling scared and sick can make
things truly overwhelming.
If children have already lived through the break-up of a
2-parent household and lost the security of both parents living
together, their grief over a parent's cancer can be worsened. The
crisis of having cancer may bring up feelings of loss as the child's
security is again threatened, this time by a parent's illness. Parents
may want to pay close attention if their children seem more insecure
during this time. If the other parent has a close relationship, extra
visits might be helpful to reassure children that they still have 2
parents who love them. If the divorced couple has problems, they need
to be resolved out of sight, away from the stressed child. Otherwise,
tensions make it harder for the whole family to get through the current
cancer crisis.
Role reversal in one-parent households
Without another adult in the household, sometimes an adult may
turn to a child for emotional support. Although a parent often knows
better, somehow it still happens. With an illness like cancer, the
chance of reversing roles with children is very real. The parent needs
more help in running the household and more emotional support. Children
may start taking on more responsibility than is healthy for their age
and stage of development. Single parents must set up a network of
friends and relatives who can be called on for emotional and practical
support. Usually, being aware that you might rely too much on your
children is enough to guard against this happening.
Same-sex couples
In a gay or lesbian household, the needs of children do not
change, but the issues can sometimes be more complex. Legal custody or
guardianship may become an issue if the legal parent is hospitalized or
unavailable. A guardian, either temporary or permanent, needs to be
appointed to act on the child's behalf in the case of a parent's
absence or an emergency. This may be a good time to look into adoption
if you haven't already.
Families with adopted children
Adopted children are often faced with questions about
themselves as they grow up and try to figure out who they are and maybe
even who their biological parents are. A parent's cancer diagnosis may
make adopted children feel more insecure. They may need special
assurance that they will be cared for if anything should happen to
their adoptive parents. This is especially true if their adoptive
parent is single, as it is with any one-parent household.
Prejudice and social isolation
In a single-parent, same-sex, or adoptive household, children
may already feel they are different from their peers. They may feel the
effects of prejudice or bias against homosexuals, or racial bias if the
adopted child is of a different race than others in the community.
Adding a cancer diagnosis to the mix may make a child feel even more
isolated from his or her peers.
Parents in same-sex relationships or cross-racial adoptions
may have talked with their children about being in a different type of
family. The same advice they give their children about being different
can also apply to having a parent with cancer.
If a child seems to be very anxious and the usual ways to
comfort them don't seem to be working, parents should talk with their
cancer care team about how to help the child. Talking with your child's
guidance counselor at school might also be helpful.
Access to a good support network can make a difference in how
well non-traditional families will cope. If a supportive network does
not exist, talk to the hospital social worker about other resources. In
many gay communities, for example, there are special support programs
with therapists who are familiar with the unique needs of this
population. Other special support groups may be available either in
your area or online. If you are not familiar with these resources, look
into what is available in case you need help.
What helps, by age group:
Infants or very young children
- Keep the baby or child near the parents or a
trusted adult who is a consistent part of the child's life, if
possible.
- Have a parent or trusted adult who is a consistent
part of the child's life see the baby or child daily.
- Get relatives, nanny, or day care providers to help
maintain the baby or child's routine.
- Record lullabies, stories, messages when parent
cannot be at home.
- Offer frequent reassurance to toddlers when a
parent is away for short times that Mommy or Daddy will soon be back.
- Cuddle and hug them often.
- Set up visits to the parent while in the hospital,
preferably at times the parent has more energy and can hold and play
with the child.
Children aged 3 to 5
The child this age will likely show more fear and anxiety when
away from the main caregiver. The child will need a consistent
substitute caregiver when the main one cannot be there, and will need
to be assured they will always be cared for. Simple, consistent
messages work best, and keeping as much as possible to the usual
routines make the child feel safer.
- Give a simple explanation that Mommy or Daddy is
sick and that the doctors are helping.
- Arrange for reliable daily care, and stick to usual
routines.
- Keep caregivers informed about family situation.
- Have a parent or trusted adult who is a consistent
part of the child's life see the child daily, if possible.
- Reassure them the parents' distress and sadness is
because of the cancer, not the children; and that the family will get
through this difficult time.
- Use play and artwork to show a child the
complicated things that are happening in the family.
- Set up a consistent time each day, such as bedtime,
when the child can ask questions and share feelings.
- Long emotional displays from a parent can frighten
a child at this age. But assure the child that it's okay to express
intense feelings for brief times. After such feelings are expressed,
it's common for the child to change the subject or go off to play.
- Arrange for one family member or trusted friend to
take a special interest in each child.
- Consult with cancer team professionals about any
concerns or changes in the child's behavior.
Children aged 6 to 8
Children at this age may come up with their own explanation of
things, like why their parent won't play with them ("Mommy doesn't love
me anymore because I told her I hated her.") It's important to explain
changes right away ("Mommy can't play with you because she's sick right
now. She loves you a lot and still wants you to have fun. Mommy will be
feeling better when her treatment is finished.") Once the child
believes their own interpretation, it can be hard to change their minds
and requires lots of repetition and reinforcement.
- Tell the child about the illness and keep the child
up to date about the parent's treatment, in words they can understand.
Be sure to explain what the child sees and hears.
- Set up consistent substitute caregiving when the
parent is away or unavailable.
- Let the children tour the clinic, meet the medical
team, and ask questions if possible.
- Find out if the cancer center has a special group
for kids with cancer in the family.
- Answer all questions honestly, including, "Will Mom
(or Dad) die?" Get help from the social worker and cancer care team if
needed.
- Listen for unasked questions, especially about the
child's own health.
- Tell the child's teachers, coaches, and other
school staff about the family's cancer situation.
- Offer repeated reassurance that the child did not
cause the cancer.
- Arrange for the child to stay in school and other
activities as much as possible.
- Support the child's having fun, despite parent's
illness—make sure they don't feel guilty about it.
- Plan for the daily availability of a parent or
trusted adult who is a consistent part of the child's life.
- Give the children permission to ask you questions
and express feelings that they think might upset others.
- Accept the child's unwillingness to talk about
feelings if they don't want to talk.
- Explain that even though the parents have less time
for the kids during treatment, they are still loved and valued.
- Suggest the child write, phone, send drawings, text
or voice messages to the parent when the parent is away.
- Explain that the parents' distress, sadness, or
crying is OK.
- Ask a family member or trusted friend to take a
special interest in each child.
- If the child shows severe anxiety, becomes fearful
or school phobic, blames himself, acts depressed, or shows low
self-esteem, consider an evaluation by a mental health professional.
Children aged 9 to 11
Usually after the age of about 9, children are able to
understand more about serious illness and may have many questions about
it.
- Give fairly detailed information about the
parent’s diagnosis: name of the disease, specifics, symptoms,
and as much as possible about what to expect. Explain what the child
observes. Answer questions honestly.
- Assure children the illness is not their fault, and
that it is not contagious.
- Tell the child that the uncertainty is stressful
for everyone, and remind that the family is strong and will get through
this painful time together.
- Have the child visit parent in the hospital.
Suggest topics to discuss; explain parent’s condition and
treatment. Children this age are helped by meeting medical and nursing
staff, and from exploring the hospital a bit. Explain any differences
in how the parent looks before you go.
- Help the child stay involved in afterschool
activities, sports, and in contact with friends. Remind the child that
it's okay to still have fun.
- Tell the child's teachers, coaches, and other
school staff about the family situation
- Remember that parents can't show special
preferences within the family without distressing or upsetting children
this age.
- Encourage children’s interest in reading
or writing about cancer or its treatment and their responses to the
parent's illness if they want to do this.
- Arrange for one family member or trusted friend to
take a special interest in each child.
Teens
Teenagers often behave in opposite ways--one day they feel
independent and the next they retreat into the safety of childhood. As
every parent of a teenager knows, it can be a delicate balancing act
between giving a teenager enough independence to learn and experience
the world while protecting them from what they are not yet mature
enough to handle. With older teens, it can be tempting to give them too
much responsibility while the parent is in treatment. And teens may try
to protect parents by trying to hide their sadness, anger, or fears, so
it's important to check in with them regularly.
- Arrange to let the teen tour the clinic or hospital
and ask questions of the cancer team if they wish.
- Give detailed information about the
parent’s diagnosis such as the name of the cancer, symptoms,
possible side effects of medicines, what they might expect, and other
information if they are interested.
- Keep the teen up to date with what's happening with
the parent's treatment. Answer all questions honestly.
- Find out if the cancer center has special group for
teens with cancer in the family
- Reassure them that cancer is not contagious
- Offer assurance that nothing they did or said
caused the cancer
- Tell the teen's teachers, coaches, and other school
staff about the family situation
- Discuss spiritual concerns related to the parent's
diagnosis
- Encourage sharing of feelings and talk about what
is normal
- Explain that even though the parents have less time
for the kids during treatment, they are still loved and valued
- Arrange to keep a normal daily life at home, as
close to the usual routine as possible
- When possible, let the teen help choose where to go
after school and have a voice in whose care they prefer when a parent
can't be there
- Provide assurance that the family will be able to
handle the crisis
- Encourage teens to keep up their usual involvement
in school and other activities
- Be sure that the teen knows parents are aware that
having fun and spending time with friends are important parts of their
lives, so there's no need to feel guilty about it.
- Don't expect the teen to take on caregiving and
other difficult tasks. Talk with the cancer care team about your family
situation and see if you can get other help.
- Check in with your teens often and let them know
that everyone has feelings that can be confusing and overwhelming. Tell
the teen it's OK to ask you questions and express feelings that they
think might upset others.
- Ask a relative or trusted friend to take a special
interest in each teen
Words
to describe cancer and its treatment
Here are a few words about cancer that your family might need
to know. You may want to explain them in a family meeting, so that all
the children (and adults) know what you mean when you use these words.
Be sure to check to find out if there are other words they've been
hearing that they don't understand. Also tell them who they should ask
if they hear other words they don't know. Older children can look up
some of the words for themselves, but know that some of the more
specialized medical terms may not be in a regular dictionary.
Benign
(be-nine):
not cancer (see also cancer,
malignant).
Biopsy
(by-op-see):
A procedure that removes a piece of tissue from a person's body so that
a doctor can look at it under a microscope. This test is used to see if
a person has cancer and if so, what kind it is (see also tissue.)
Cancer:
A name for the more than 100 diseases in which cells that are not
normal grow and divide rapidly. These abnormal cells usually develop
into a tumor (mass or lump). Cancer can also spread to other parts of
the body from where it started. Certain kinds of cancers can grow in
places like the bone marrow, where they don't make a tumor.
Chemotherapy
(key-mo-THER-uh-pee); also
called chemo:
Treatment that uses drugs to kill cancer cells. Common side effects of
chemo include short-term hair loss, nausea and vomiting, mouth sores,
feeling tired (fatigue), and a greater chance of getting infections.
The kind of side effects a person has depends on the drugs they are
getting. All chemo drugs do not cause the same side effects.
Clinical trials:
Research studies that are set up to compare new cancer treatments with
the standard or usual treatments.
Fatigue
(fuh-teeg):
a common symptom during cancer treatment, a bone-weary exhaustion that
doesn’t get better with rest. For some, this can last for
some time after treatment.
Malignant
(muh-lig-nunt):
Another word for cancer.
Metastasis
(meh-tass-tuh-sis):
The spread of cancer from one part of the body to another. The plural
is metastases
(meh-tass-tuh-sees).
Oncologist
(on-call-uh-jist):
A doctor who specializes in treating cancer. There are medical,
surgical, and radiation oncologists.
Prognosis
(prog-no-sis):
A prediction of the course of disease; the outlook for the chances of
survival.
Protocol
(pro-tuh-call):
A detailed, standard plan that doctors follow when treating cancer
patients.
Radiation therapy:
Treatment of cancer with high-energy rays to kill cancer cells. This
treatment is given by a machine or by materials put in or near the
body. The side effects of radiation therapy usually show up in the part
of the body being treated. For example: reddening of the skin where the
radiation is given, hair loss if the head is being treated, nausea if
the stomach is being treated, and trouble swallowing and eating if the
head and neck area is being radiated. Tiredness (fatigue) is the most
common side effect of radiation.
Recurrence:
The return of cancer cells and signs of cancer after a remission.
Relapse:
The same as recurrence.
Remission:
The disappearance of cancer symptoms and cells as a result of
treatment.
Side effects:
Problems caused by cancer treatments. Two people with the same cancer
and even the same treatments may not have the same side effects. Your
doctor can tell you what happens to most people, but cannot say for
certain what will happen to you. Not having side effects does not mean
that the treatment is not working. Tell your children what the doctor
has told you, and promise to tell them if you start to feel the effects
of the treatment.
Surgery:
A procedure done by a doctor who is an expert in doing operations.
Tissue
(tish-u): a
collection of cells that work together to perform a certain job or
function in the body. Different parts of the body, such as the skin,
lungs, liver, or nerves can be called tissue. Tissue can be cancerous
or normal. Doctors often biopsy tissue in a certain area to find out if
it has cancer cells in it. (See also malignant, benign, biopsy.)
Tumor:
An abnormal mass of tissue. Some tumors are cancer and some are not.
There will be other words that apply to your or your family
member's treatment that your child may want to learn. You can learn
more about these words and what they mean on www.cancer.org or call us
at 1-800-227-2345. You can also learn more about the type of cancer
that you are dealing with, and ask your own questions.
Additional
resources
More information from your American Cancer
Society
We have selected some related information that may also be
helpful to you. These materials may be ordered from our toll-free
number, 1-800-227-2345.
- It Helps to Have Friends When Mom or Dad Has Cancer
Books from your American Cancer Society
The following books are available from the American Cancer
Society. Call us at 1-800-227-2345 to ask about costs or to place your
order.
National organizations and Web sites*
Cancer Really
Sucks
An internet-only resource designed for teenagers by teenagers who have
loved ones facing cancer
Web site: www.cancerreallysucks.org
Cancercare for
Kids
Especially for children with a parent, sibling, or other family member
who has cancer
Toll-free number: 1-800-813-HOPE (4673)
Web site: www.cancercareforkids.org
Kids Konnected
For children and teenagers who have a parent with cancer and for those
who have lost a parent to cancer
Toll-free number: 1-800-899-2866 (If you get voicemail, leave message
to receive a return call within 24 hours.)
Web site: www.kidskonnected.org
Kidscope
Has special online materials, a comic book for children about
chemotherapy and another item about breast cancer in the family
Telephone: 404-892-1437 (voicemail is only checked once per week)
Web site: www.kidscope.org
National Cancer
Institute
To learn more about cancer, or to get special information for teens;
you can call to order a special booklet for teens whose parents have
cancer or read it online at: www.cancer.gov/cancertopics/when-your-parent-has-cancer-guide-for-teens
Toll-free number: 1-800-422-6237
Web site: www.cancer.gov
Other publications*
Books for adults
Can I Still
Kiss You? Answering Your Children's Questions About Cancer
by Neil Russell. Published by HCI, 2001
Helping Your
Children Cope With Your Cancer: A Guide for Parents by
Peter Van Dernoot and Madelyn Case. Published by Hatherleigh Press,
2002
How to Help
Children Through a Parent's Serious Illness by Kathleen
McCue and Ron Bonn. Published by St. Martin's Press, 1996
Life and Loss:
A Guide to Help Grieving Children by Linda Goldman.
Published by Taylor and Francis Group, 2nd Edition, 1999
When a Parent
Has Cancer: A Guide to Caring for Your Children by Wendy
S. Harpham. Published by HarperCollins, Publishers, 2001
When Someone in
Your Family Has Cancer. National Cancer Institute,
1-800-4-CANCER or www.cancer.gov
Books for children
Becky and the
Worry Cup, by Wendy Harpham. Published by HarperCollins,
1997. Best for ages around 5 to 10. (Sold with When a Parent Has Cancer,
by the same author.)
In Mommy's
Garden: A Book to Help Explain Cancer to Young Children by
Neyal J Ammary. Published by Canyon Beach Visual Communications, 2004.
Best for very young children. Also available in Spanish.
Lost and Found:
A Kid's Book for Living Through Loss by Marc Gellman and
Debbie Tilley. Published by HarperCollins, 1999. Best for ages around 9
to 12.
My Mommy Has
Cancer by Carolyn S. Parkinson. Published by Solace
Publishers, 1991. Best for ages around 4 to 7.
Sammy's Mommy
Has Cancer (Books to Help Children) by Sherry Kohlenberg,
Published by Gareth Stevens Publishers, 1994. Best for ages around 4 to
7
The Paper Chain
by Claire Blake, Eliza Blanchard, and Kathy Parkinson. Published by
Health Press, 1998. Best for ages around 4 to 9.
The Year My
Mother Was Bald by Ann Speltz and Kate Sternberg.
Published by American Psychological Association, 2002; Best for ages
around 9 to 12.
Tickles
Tabitha's Cancer - Tankerous Mommy by Amelia Frahm.
Published by Hutchinson,
Nutcracker Publishing Company, 2001. Best for around ages 4 to 7.
Vanishing
Cookies: Doing OK When a Parent Has Cancer by Michelle B.
Goodman, Published by Michelle B. Goodman, 1991. Best for ages around 9
to 12.
Videos for children and adults
We Can Cope:
Helping Parents Help Children When a Parent Has Cancer.
DVD has sections for teens, younger children, and parents, as well as a
guidebook on how to use it. Check your cancer treatment center library
or call Inflexxion at 1-800-848-3895, extension 276 (try extension 201
if no response from 276) to find out how to buy it. (Cost is $99.95 so
you may want to try to borrow it or buy a used copy.)
Kids Tell Kids
WhatIit's Like When Their Mother or Father has Cancer.
Children talk about coping with their parents' cancer; best watched as
a family, to help kids and parents talk about cancer's effects in their
lives. Check your cancer center treatment library or buy DVD from
www.cancervive.org (cost: $40.00 new)
*Inclusion on
this list does not imply endorsement by the American Cancer Society.
No matter who you are, we can help. Contact us anytime, day or
night, for information and support. Call us at 1-800-ACS-2345 (1-800-227-2345) or
visit cancer.org.
References
Christ GH, Christ AE. Current approaches to helping children
cope with a parent's terminal illness.
CA Cancer J Clin. 2006 Jul-Aug;56(4):197-212. Accessed online at:
http://caonline.amcancersoc.org/cgi/content/full/56/4/197 on April 2,
2009.
Fasciano K. ASCO Expert Corner: Returning to School After
Cancer. Accessed at:
www.cancer.net/portal/site/patient/menuitem.169f5d85214941ccfd748f68ee37a01d/?vgnextoid=b09be05611d54110VgnVCM100000ed730ad1RCRD
on March 6, 2009.
Harpham WS. When a Parent Has Cancer: A guide to caring for
your children. New York: HarperCollins 2004.
National Cancer Institute. Pediatric supportive care
(PDQ®). Accessed at:
www.cancer.gov/cancertopics/pdq/supportivecare/pediatric/HealthProfessional
on April 2, 2009.
National Cancer Institute: When Someone In Your Family Has
Cancer. Accessed at:
www.cancer.gov/cancertopics/when-someone-in-your-family/page1 on April
2, 2009.
Welch AS, Wadsworth ME, Compas BE. Adjustment of children and
adolescents to parental cancer. Parents' and children's perspectives.
Cancer. 1996 Apr 1;77(7):1409-1418.
Last Medical Review: 05/07/2009
Last Revised: 05/07/2009
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