The following excerpt is taken from Chapter
14 of Childhood Cancer: A Parent's Guide to Solid Tumor Cancers
, 2nd Edition by Honna Janes-Hodder & Nancy Keene, copyright 2002 by
O'Reilly & Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
The diagnosis of cancer can be a frightening and isolating experience. Every
parent of a child with cancer has a story to tell of lost or strained
friendships. Yet we are social creatures, reliant on a web of support from
family, friends, neighbors, and church. We need the presence of people who not
only care for us, but try hard to understand what we are feeling. Many parents
experience deep loneliness after the first rush of visits, cards, and phone
calls end, when the rest of the world goes back to normal life.
Members of families struck by childhood cancer--parents, the child with
cancer, and siblings--are turning increasingly to support groups and various
other methods of psychological help. Families join support groups to dispel
isolation, share suggestions for dealing with the illness and its side effects,
and talk to others who are living through the same crisis. Individual and
family counseling can help address shifting responsibilities within the family,
explore methods to improve communication, and help find ways to channel strong
This article describes support from social workers, clergy, counseling, and
camps for children with cancer. Support groups will be discussed in a later
While the need for skilled pediatric social workers is widely recognized,
shrinking hospital budgets often prevent adequate staffing. If you bring your
child to a children's hospital well-staffed with social workers, child life
specialists, and psychologists, consider yourself lucky. Sadly, millions of
dollars are spent on technology, while programs which help people cope
emotionally are often the first to be discarded. If your pediatric center
offers no support, explore the other methods described later in the chapter to
get help in dealing with the pain of childhood cancer.
Pediatric social workers usually have a master's degree in social work, with
additional training in oncology and pediatrics. They serve as guides through
unfamiliar territory by mediating between doctors and families, helping with
emotional or financial problems, locating resources, and easing the young
patient back into school. Many social workers form close, long-lasting bonds
with families, and continue to answer questions and provide support long after
Over the course of my son's treatment, I became very close to the hospital's
social worker. I came to see her as not only a person who was very good at her
job and providing me with wonderful support, but also as a friend. She was very
much "in tune" with my personality, and seemed to sense when I was
having a rough day, even if I had been doing my best to hide it. So many times
she would stop by my son's room and invite me to join her for coffee in the
cafeteria, her treat. And we would sit and talk about anything and everything.
She seemed to have a natural talent for making me laugh when I really needed to
most. And she never expressed discomfort when I needed to cry or curse the
unfairness of the situation we were in. She was a very good listener.
We went to a children's hospital which was renowned in the pediatric cancer
field. The medical treatment was excellent, but psychosocial support was
nonexistent. The day after diagnosis, we were interviewed for twenty minutes by
a psychiatric resident, and that was it. I never met a social worker, and the
physicians were so busy, they never asked anything other than medical
questions. If I started crying, they usually left the room. I didn't know
Candlelighters existed; I didn't know that there was a local support group; I
didn't know that there was a summer camp for the kids. I felt totally
In addition to social workers, some hospitals have on-staff child life
specialists, psychiatric nurses, psychiatrists, psychiatric residents, and
psychologists who can help deal with problems while your child is an
After I relapsed, I had a hard time with nausea, so I went to learn
self-hypnosis. The doctor who taught the hypnosis also counseled me, and that
was very helpful. He was somebody that I could relate to and talk to about what
was going on. Talking about how I felt about having cancer, and how that
affected my life, was very helpful to me.
Religion is a source of strength for many people. Many parents and children
find that their faith is strengthened by the cancer ordeal, while some begin to
question their beliefs. Others, who have not relied on religion in the past,
turn to it now.
Most hospitals have staff chaplains who are available for counseling,
religious services, prayer, and other types of spiritual guidance. Often, the
chaplain visits families soon after diagnosis and is available on an on-call
basis. As with any mental health encounter, approaches that work well for one
family may not be helpful to others.
When Shawn was first diagnosed, Father Ron came in, and we all just really
bonded with him. Shawn was in the hospital most of the first year, so we had a
chance to become very close. Often Shawn would ask for Father Ron before he had
to have a painful procedure. Father Ron would talk to him, give him a little
stuffed animal and a big hug, and then Shawn would feel fine.
When Shawn was very ill, I began to worry about the fact that he had never been
baptized, and I asked Father Ron to baptize him in the chapel. We ended up
going to his own little church nearby, and we had a private service with just
godparents and family because Shawn's counts were so low. It was a wonderful,
special service; I'll never forget it.
When our son was first diagnosed, we didn't feel as if we could discuss any of
our fears with the hospital chaplain. I believe it was simply because our
personalities didn't "click" well together, and we would feel more
uncomfortable than anything else whenever he would visit. Several months into
treatment, the hospital had a new chaplain, and we hit it off immediately. It
was a joy to see him walking down the hall toward my son's room. He seemed to
have a natural gift for making me feel better, even when things seemed to be
crumbling around me.
Parents who were members of a church, synagogue, or mosque prior to the
diagnosis of their child's cancer often derive great comfort from the clergy
and members of their home church. Members of the congregation may rally around
the family, providing meals, babysitting, prayers, and support. Regular visits
from the priest, minister, or rabbi provide spiritual sustenance throughout the
initial crisis and subsequent months of treatment.
We belong to a religious group that has met weekly for eight years. In our
group during that time there have been three cancer diagnoses and one of
multiple sclerosis. We have all become an incredibly supportive family, and we
share the burdens. I cannot begin to list the many wonderful things these
people have done for us. They consistently put their lives on hold to help.
They fill the freezer, clean the house, support us financially, parent our
children. They do the laundry covered with vomit. They quietly appear, help,
then disappear. I can call any one of them at 3 a.m. in the depths of despair
and find comfort.
Cancer is a crisis of major proportions for even the strongest of families. Parents do not need to face this crisis alone and unassisted. Many find it helpful to seek out sensitive, objective mental healthcare professionals to explore the difficult feelings-fear, anger, depression, anxiety, resentment, guilt-that cancer arouses.
Family responsibilities and authority undergo profound changes when a child is diagnosed with cancer. Sometimes members of the family have difficulty adjusting to the changes. Although some families discuss the uncomfortable changes and feelings openly and agree on how to proceed, many need help.
Seeking professional counseling is a sign of strength, not failure. In dealing with children with cancer, problems often become too complex for families to deal with on their own. Seeking advice sends children a message that the parents care about what is happening to them and want to help face it together.i
One of the first questions that arises is, "Who should we talk
to?" There are a number of resource people in the community who can make
referrals and valuable recommendations, including:
- Nurse practitioner
- Clinic social worker
- School psychologist or counselor
- Health department social worker
- Other parents who have sought counseling
Ask your community resource people for a short list of highly regarded mental health care
professionals who have experience working with your issues (for example,
traumatized children, marital problems, stress reduction, or family therapy).
Generally, the names of the most well respected clinicians in the community
will appear on several of the lists.
Choosing to get therapy isn't easy. And going to a psychologist isn't easy. The only way to really work through the emotional pain is to look closely at it. Sometimes they ask hard questions. But it has been very beneficial for me. The best part about therapy is the person you are talking to is impartial. They aren't related to you, don't go to church with you, don't live with you, and have no connection to you or your situation. A totally unbiased perspective can be helpful when it feels like you are at the bottom of the pit, with no handholds, no ladder, but a shovel right beside you to help you dig deeper.
If you decide to go with one, do your research. I called and asked for references from a cancer help line and the social worker at the clinic. Then I talked to a couple of therapists before I decided which one to go with. She was willing to work with me on a payment schedule.
In making your decision, it helps to understand the different levels of
training and education of the various types of mental health care
professionals. You will be able to choose from individuals trained in one of
these four related fields:
Psychology (EdD, MA, PhD, PsyD). Marriage and family psychotherapists have
a master's degree, clinical and research psychologists have a doctorate (in
some states, the use of the title "psychologist" may also be allowed
for those with only a master's degree.)
- Social work (MSW, DSW, PhD). Clinical social workers have either a
master's degree or a doctorate in a clinically emphasized program.
- Pastoral Care (MA, MDiv, DMin, PhD, DDiv). Some laymen and members
of the clergy have received specialized training in counseling.
- Medicine (MD, RN). Psychiatrists are medical doctors (and only they
are able to prescribe medications). In addition, some nurses obtain
postgraduate training in psychotherapy.
- Counseling (MA). In most states, school and agency counselors must have a master's degree and a year of internship before they can be hired as a counselor. To be a licensed professional counselor (LPC) requires a master's degree, additional coursework, thousands of hours of supervised counseling experience, and passage of a state licensing exam.
The designations LCSW (Licensed Clinical Social Worker), LSW (Licensed Social Worker), LMFCC (Licensed Marriage and Family Child Counselor), LPC (Licensed Professional Counselor), LMFT (Licensed Marriage and Family Therapist) refer to licensure by state professional boards, not academic degrees. These initials usually follow others that indicate an academic degree. If they don't, inquire about the therapist's academic training.
You may hear all of the above professionals referred to as counselors or
therapists. Most states require licensure or certification in order for
professionals to practice independently; unlicensed professionals are allowed
to practice only under the supervision of a licensed professional (typically as
an intern or assistant in a clinic or licensed professional's private
When you are seeking a counselor for yourself, ask the professional how long she has been in
practice. A licensed marriage and family therapist who has been seeing patients
for ten years may be a much finer clinician for your needs than a licensed
psychologist or psychiatrist in their first year of practice.
Another method to find a suitable counselor is to contact The American Association
for Marriage and Family Therapy, in Washington, DC, (202) 452-0109 or online at http://www.aamft.org. This is a
national professional organization of licensed/certified marriage and family
therapists. It has more than 23,000 members in the U.S. and Canada, and its
membership also includes licensed clinical social workers, pastoral counselors
(who are MFCC /LMFTs), psychologists, and psychiatrists.
A psychiatrist who is the mother of a child with cancer offers a few thoughts:
Counseling helps, preferably from someone who regularly deals with parents of seriously ill children. This therapy is almost always short-although there may be some pre-cancer problems complicating the cancer issues that need to be hammered out.
Antidepressants definitely have a role in the "so your child has cancer" coping strategy. They cannot make the diagnosis go away. They can improve concentration, energy, sleep, appetite, ability to get pleasure in life, and hope for the future-all of which you, your child with cancer, your spouse, and your other kids need you to have! They are not a magic bullet. They take two to eight weeks to work, and you may need to change once before you get the right medication, but it can make all the difference.
Also, nurture yourself. Take bubble baths. Buy flowers. Let people pamper you. Say yes when people offer to help. Redefine normal so things can be good again. Make time for yourself. Spend time with your spouse (even an hour to walk and talk and hold hands). Find time for your non-cancer kids, reveling in their accomplishments. Celebrate what is good about your life.
Pick out things that you feel are important to keep up with and do them. (For me it was laundry.) Ignore things that don't matter for the time being. (For me it was tidy rooms and cooking.) Make peace with your decisions and follow them.
To find a therapist, a good first step is to call two or three therapists who appear on several of your lists of recommendations. During your telephone interview, the following are some suggested questions to ask:
- Are you accepting new clients?
- Do you charge for an initial consultation?
- What training and experience do you have working with ill or traumatized
- How many years have you been working with families?
- What is your approach to resolving the problems children develop from
trauma? Do you use a brief or long-term approach?
- What evaluation and assessment procedures will be used to define the
- How and when will treatment goals be set?
- How will both parents be involved in treatment?
- What are your fees? Will the insurance company be billed directly?
The next step should be to make an appointment with one or two of the
therapists who you think might be able to best address your needs. Be honest
about the fact that you are interviewing several therapists prior to making a
decision. The purpose of the introductory meeting is to see if you feel
comfortable with the therapist. After all, credentials do not guarantee that a
given therapist will work for you. Compatibility, trust, and a feeling of
genuine caring are essential. It is worth the effort to continue your search
until you find a good match.
I called several therapists out of desperation about my daughter's withdrawal
and violent tantrums. I made appointments with two. The first I just didn't
feel comfortable with at all, but the second felt like an old friend after one
hour. I have been to see her dozens of times over the years, and she has always
helped me. I wasn't interested in theory; I wanted practical suggestions of how
to deal with the behavior problems. My four-year-old daughter asked why I was
going to see the therapist, and I said that Hilda was a doctor, but instead of
taking care of my body, she helped care for my feelings. She asked to go to the
"feelings" doctor, but was concerned about whether her conversations
would be private. I asked the counselor to explain about the limits of
confidentiality. So that began a very helpful course of therapy for my very
traumatized daughter. To this day I don't know what was said, nor would I ever
ask my daughter or Hilda. I do know that they did a lot of art therapy, and I
know that it helped immensely.
We went into family therapy because every member of my family experienced
misdirected anger. When they were angry they aimed it at me--the nice person
who took care of them and loved them no matter what. But I was dissolving. I
needed to learn to say "ouch," and they needed to learn other ways to
handle their angry feelings.
Children need to be prepared for psychological intervention as for any
unknown procedure. The following are several parents' suggestions on how to
prepare your child:
- Explain who the therapist is, and what you hope to accomplish. For
instance, you might be taking the whole family to improve communication or
resolve conflicts. If you are bringing your child in for therapy, explain why
you think talking to an objective person might benefit him.
- Older children should be involved in the process of choosing a counselor.
Younger children's likes and dislikes should be respected. If your young child
does not get along well with one counselor, change.
- Make the experience positive rather than threatening.
- Reassure young children that the visit is for talking, drawing, or playing
games, not for anything that is physically painful.
- Ask the therapist to explain the rules of confidentiality to both you and
your child. Do not quiz your child after a visit to the therapist.
David had a very difficult time dealing with his brother's cancer. Realizing
that we were unable to provide him with the help that he needed, we sought
professional help for him. I think the reason that he feels so comfortable with
his therapist is that he is aware of the rules of confidentiality. After his
sessions, I'll always ask him how it went. Sometimes he'll just grin and say
that it was fine, and other times he might share a little of his conversation
with me. I never push or question him about it. If it is something he needs to
discuss, I wait until he decides to broach the subject.
- Make sure that your child does not think that she is being punished;
instead assure her that therapists help both adults and children understand and
deal with feelings.
- Go yourself for counseling or to support group meetings to model the fact
that all ages and types of people need help from time to time.
In the beginning of treatment, my son had terrible problems with going to sleep
and then having nightmares, primarily about snakes. We took him to a counselor,
who worked with him for several weeks and completely resolved the problem. The
counselor had him befriend the snake, talk to it, and explain that it was
keeping him awake. He would tell the snake, "I want you to stop bothering
me because I need to go to sleep." The snake never
Some other types of therapy commonly used to help children are music therapy (www.musictherapy.org), art therapy (www.arttherapy.org), and dance therapy (www.ADTA.org).
In Armfuls of Time, Barbara Sourkes quotes Jonathan, a boy with
cancer, who told her, "Thank you for giving me aliveness." She
discusses the importance of psychotherapy for the child with a life-threatening
Even when life itself cannot be guaranteed, psychotherapy can at least
"give aliveness" to the child for however long that life may last.
Through the extraordinary challenges posed by life-threatening illness, a
precocious inner wisdom of life and its fragility emerges. Yet even in the
struggle for survival, the spirit of childhood shines through.
Summer camps for children with cancer, and often their siblings as well, are
becoming increasingly popular. These camps provide an opportunity for children with cancer and their siblings to have fun, meet friends, and talk with others in the same situation. Counselors are usually cancer survivors and siblings of children with cancer, or sometimes oncology nurses and residents. Supervised by experts, children can have their concerns addressed without involving their parents. These camps provide a carefree time away from the sadness of the family or the all too frequent hospital visits.
Of all the ways to get support, I think the camp really helps the most. You are
all there together for enough time to break down the barriers. Although camp
does not focus on cancer, many times we really got down to talking about how we
really felt. I have been a counselor at the camp for eight summers now. Most of
the campers know that I relapsed three times and I'm doing great many years
later. They see the many other long-term survivors who are counselors, and it
gives them what they need the most--hope. The best support is meeting
survivors, because nobody else truly understands.
Some camps are set up to accommodate not only the child who has undergone treatment, but their siblings and parents as well. Many camps offer separate weeklong camping experiences just for siblings.