Introduction

For a person with cancer, one of the most difficult situations occurs if the cancer continues to grow during treatment or comes back after treatment is over. It is also hard for their loved ones, including friends, family members, and young children and teens. You may find that you are even more worried (if possible) than you were when you were first diagnosed. Depending on the kind of cancer you have, it may have been many years since you were first diagnosed. No matter how much time has passed, you may find yourself facing all-too-familiar feelings of fear and uncertainty. Each of those close to you relives the experience in his or her own way. This discussion is written from the standpoint of a parent with cancer, but it can also apply to any well-loved family relative.

How Can I Help Anyone Else When I'm Feeling So Upset About My Cancer Coming Back?

Sometimes recurrence can seem so overwhelming you feel that you can't help yourself, much less anyone else. All of a sudden, life feels chaotic again and your survival is in question. But remember that you don't need to be perfect and that you are your children's best source of security. Your steadfast love for them is the most important factor in how they will manage, so try to be realistic about what you expect of yourself. You may need to rely on the help of others again for some time during active treatment. While it is often hard to ask for help, remember it is only a short-term measure until you are feeling more in control.

You may now feel sadness and grief as you prepare to do battle with cancer again. You realize that your comfortable, normal life will go away again, at least for a while. Patients often describe a feeling of "betrayal" from their healthy body for letting them down. They say things like "I did everything that was recommended (surgery, chemotherapy, or radiation) and the cancer still came back!” You may wonder what you can count on. Some people describe feeling completely open to any attack and unable to defend themselves against anything. All of these feelings are normal. At some point, you will be able to gather up your resources and fight the cancer again. One of the biggest mistakes you can make at this point is to expect to meet this challenge alone. You and your family and loved ones must meet it together since this battle may be even harder than the first one.

So, take some time to feel badly. Talk to your family about how they are feeling. Then you can pull yourself (and your resources and support systems) together to begin doing the things you need to meet the challenge of your cancer. You may be facing many more months of treatment and will need to make a plan for how you and your family can best manage.

What Is The Bottom Line? Does Recurrence Mean The Situation Is Hopeless?

There are many different ways of looking at this issue. Is there a chance you might not survive your cancer recurrence? Yes. Does that mean there is no hope? No. What it does mean is that your hope may change a great deal from the kind of hope you had when you were first diagnosed.

To be more specific, the type of cancer you have and your response to treatment will determine the status of your cancer. Today, a cancer recurrence does not mean you will not live long. Advances in cancer treatment and the management of treatment side effects have improved over the years. There is no denying the situation is more serious if the cancer has recurred, but for many patients it simply means that treatment will be different and perhaps more aggressive than it was at first.

It is often very hard to think about beginning more treatment for cancer. You may have feelings of panic and desperation. But there often are more (or different) treatment options available. If you are unsure about more treatment, it may help to get a second opinion from a doctor at a cancer center or university teaching hospital (if you have not previously been treated in such a center). Make sure you have covered all your bases and given yourself every chance that modern medicine can offer in fighting your illness.

What If My Cancer Is In Many Areas Of My Body? Should I Still Consider More Treatment?

There is no one answer to this question. It depends on your cancer and the effect it is having on your body, the information you are getting from your health care team, and you and your family's thoughts and feelings about the situation. During cancer treatment (even if the treatment is not working well), you are under a doctor's care, the tumor's progress is being checked, and side effects and symptoms are being assessed and treated. For some, receiving cancer treatment helps them feel better emotionally. For others, being in treatment works the opposite way-- it may make them feel less free. Only you can decide how you want to live your life. Of course, you will want to hear how your family feels about it, too. Their feelings are important since they are living through the cancer with you.

Whatever you decide in terms of aggressive cancer treatment, there is always the option of supportive care, or palliative care (treatment that relieves symptoms, such as pain, but is not expected to cure the disease). Palliative care is a whole different branch of medical care that deals with making your life the best it can be even if there is not a good chance of curing your cancer. That means that symptoms such as nausea, pain, fatigue, or shortness of breath are aggressively controlled,. Sometimes medications are used, but other approaches may involve different types of treatments. There are many resources available for giving you the latest in palliative care options. (Check our resource section at the end of this document.)

This is also an opportunity to seek assistance with any family issues or to get help for your children or other loved ones. Oncology social workers, nurses, or doctors can usually get you started in the process of finding mental health resources.

How Should I Explain Cancer Recurrence To My Children?

Hiding the reality of cancer from children is almost impossible. What a child imagines is often much worse than the reality. We may not tell our children the truth because we want so badly to protect them. However, we set our children up for more trouble in the future by "sparing" them the truth.

Children who have not been told the truth about a parent's illness tend to have a harder time dealing with reality when it hits. A child doesn't need to know every detail of your cancer situation. However, assuring them that you are a trustworthy parent and will continue to be -- no matter what -- will help them to feel safe even when there is difficult news. The truth is always easier to remember because it is the truth. Take the pressure off yourself and your child.

Children are by nature most interested in what is happening with them -- in other words, how your recurrence affects their lives. They need to know enough to manage their own fears and continue to function in school, with their peers, and with as much security and normality as you can provide.

When you first talk with your children about your cancer's return try to find out what they remember from the last time you discussed it. You may be surprised by some of their memories or misperceptions. Correct any misperceptions and add to the information they were given in the past. Explain that the cancer has now come back and will need to be treated again with stronger medicines or other treatments. Make sure that children understand basic cancer terms. Even though they are older now, don't assume they understand cancer language. For example, one child believed that because his mother's hair had grown back, her cancer had gone away forever. This makes sense as we know that children often think in concrete terms. If we look healthy, we must be healthy.

Children need preparation to know exactly how your treatment will affect their lives. They need to know what the side effects of treatment will be, what changes in the family routine to expect, and when to hope for a return to a normal life again. It is painful to see the upset in your children's lives. Even though you know the cancer is not your fault, you might find that you blame yourself. Perhaps this expression states it best: "You can visit there, but don't live there!" Spending time feeling guilty is futile and a waste of the energy you need to fight the cancer. Try to make your children part of the problem-solving sessions about how to manage the changes that will occur because of your cancer and treatment. This will empower them, make them feel valued, and help them become part of the solution.

Weekly family meetings are a good way to manage the anxiety that can build up over time. Meetings are a wonderful way to help everyone feel that their concerns are important. As the parent or adult in the group, it is your job to keep everyone focused in a positive way—toward solving the issues, and providing an opportunity for sharing feelings in a caring and supportive way. At the same time, you get a break from thinking about yourself all the time and can feel you are effective in another area of your life. The weekly family meeting is a special time reserved for everyone to talk about anything that is bothering them. If you are expecting a difficult week ahead with treatment side effects or time spent away from your children, you can prepare them by talking about what plans you have made to keep the wheels turning as normally as possible

The family schedule of activities may need to be changed to work around more intensive treatment. You might need to make other arrangements so that their routines can continue, with other people filling in, until you are feeling better. Even though you can't do certain things, you might want to substitute some activities that won't take quite as much energy. Arrange times to be together to watch TV, read a book, make up a story, play a board game, or whatever else you can think of to spend time with your children. Children would rather you be present, even if a little tired, than not there at all.

What If My Children Ask If I Am Going To Die?

This topic should be discussed with your children whether or not they ask you the question directly. It is on your children's minds whether they ask you or not. The prospect of death can be frightening for both you and your children. It takes real courage to move ahead and break ground. This willingness to go to a scary place for them is a priceless gift you can give your children. And this is a gift much better given by you than by an adult who is not close to them. Directly confronting this issue will help not only your child but will also help you prepare for whatever the future holds.

Under the best of circumstances, death is often a possibility with recurrence. Here are some suggestions on how you might answer the question, "Are you going to die?" in a way that is realistic but that will not make your child overly anxious:

"Some people with cancer get all better and some don't -- I am trying my best to get better."

"I don't think that is happening right now. If I think that is something we need to think about in the future, I'll let you know."

"You know this is a serious situation. It's possible that I could die, but I'm not dying right now, so let's take every day, and think of one good thing about the day. That will help us be happy about the time we have right now."

"It all depends on how I react to my treatment--let's give the chemotherapy (or radiation) a chance to work. It worked before, so hopefully it will work again."

In your answers you are trying to give your child a balanced response. You want to admit that there is a chance you could die. However, there is also a chance you could live—for a long while or a short time. Children tend to focus more on the present. So they can be content with the here and now. Even if you are pretty sure that death will be a reality sooner rather than later, your family needs to live until you actually die. And so do you. There is no way people can live anything like a normal life if they are totally immersed in thinking about death. If death is an unwelcome possibility, it should be faced but put into perspective.

By around the age of 8, children can begin to understand death as a permanent state. From the age of 13 through 18, a child is capable of thinking more abstractly about things that they have not experienced themselves. They have a new understanding that people are fragile. They may also try to deny fear and worry to avoid talking about them.

How Is It Possible For Children (Or Anyone) To Live With This Kind of Uncertainty?

There are long and short answers to this question, but both acknowledge that it is not easy to live with uncertainty. There is no other option but to simply put one foot in front of another, day by day.. Sometimes even having sad and discouraging news is slightly easier than the unknown.

One way to master the unknown is to find something positive in the situation every day. Write down one good thing or one thing you are thankful for every day. Over time, you may find you are beginning to search each day for the one "good thing" to write in your journal. Doing this together with your chldren can be a great task to share. Sometimes, you may be so low you can't think of one positive thing to say. But your child may have 5 small things that have made his or her life fun or interesting. Children are amazing in their resilience. Since they are always learning and everything sems new to them, their precious insights may help you appreciate each day even more.

This is not to say that there are not really hard days where there is just no getting past the lack of good news. Give yourself and others permission to feel down, then help them come back up. No 2 people see the world alike. There are some people who are see the cup as half full and those who will always see the cup as half empy. You can't change that.

While there is nothing good about the possibility of a parent's death, there are stories in every family about how a hard time had a silver lining. For example, when Aunt Mary died, the kids all grew much closer to their Dad—he really came through for them. A teenager who had a grandparent go through a long illness marked by confusion decides to volunteer in a nursing home and considers making medicine or nursing a career. Children dealing with a relative who has a cancer recurrence learn to be more sensitive to peers with other family troubles. As parents we want to protect our children from all pain, but in the process of allowing them to feel some of life's harsh realities, they become more mature.

What Is A Child's Greatest Worry If A Parent's Illness Progresses?

Clearly, children worry about their fate if a parent must leave them due to their cancer. In today's world of divided and single-parent families, this concern can be especially distressing. Depending on the age of the children, the "who will take care of me?" question can be the most critical. This question must be addressed whether the child actually verbalizes it or not. We all fear being abandoned. Children are not able to survive without someone to take care of them, so this question is basic and critical. Dealing with this question is probably one of the most painful experiences a parent can have. As a parent or caretaker, you might want to seek help from a professional.

Today, families come in many shapes and sizes. There may be many people involved in the discussions that take place about these issues. Extended familiy members, beloved friends, teachers, or spiritual leaders can all be invited into the family to help with decisions—both making them and talking about them. Most importantly, these burdens are not meant to be carried on only 1 or 2 sets of shoulders.

In an ideal world, parents, whether they are ill or not, will have made arrangements for their children. Accidents can happen and life can change in one instant, and children can find themselves in a very different world. Regardless of the expected progression of your illness, you and your partner or you and your family members may want to sit down and discuss the best plan for your child's living situation. A lawyer can draw up a will or legal document that will outline your wishes if you die. You should simply sit down with your children and explain the decisions you have made and explain why these decisions have been made. Questions should be encouraged and answered as honestly and directly as possible. Make clear to your children that you are making the best plan for them, but that you do not expect to have to put this plan into place right away. This is a "just in case" plan.

For example, it will reassure your children to know that you have already talked to your sister about the plan. Say something like, "As sad as your Aunt Sara would be about my death, she would be thrilled to have you as part of her family forever. We have talked about it and it's all settled." For a 2 parent family, changes need to be discussed because things will never be the same. For example, a mother might say to her two children, "Your dad has an insurance policy that would give us some money to help us live here in the house. But just to make sure we would be ok, I would probably go back to school and get my teacher's certificate, like I've always wanted. Someday I would probably go to work, but not right away. Your dad and I have talked about this, and he thinks this is a good idea too. What do you guys think?"

You can expect that with any change children will have questions. They may even have some resistance to the change as well as feelings of sadness and loss. It is unrealistic to expect them to "get behind the plan" right away. But at least you are giving them information and structure to make them feel safe and secure should the worst happen. Even though the cancer may change everything in the family, they will still be taken care of. That's how important they are. That's a great message for children to get. So give yourself a pat on the back for getting this one accomplished.

What About The "Why" Questions?

Both adults and children deal with the question "why?" throughout the cancer experience. This question becomes more intense the more serious the situation is.

For some people, looking for an answer to the "why me" question can cause many sleepless nights and incredible soul searching. Others find that it doesn't really matter why something has happened--how to best deal with it is more important. Many people think that if they knew why something has happened--if they do or stop doing something--somehow the situation will change. While this notion is not necessarily rational, it illustrates the way people think. We all look for reasons for what happens in our lives. It is hard to accept that cancer can be a random event and that there may be no answer to why a person develops the disease. There are many forces that can influence the development of cancer--these can be genetic, environmental, or related to behavior, like smoking. Most people never know why they have cancer, so trying to find the answer to this question only produces frustration and drains the energy needed to cope with the illness.

For some people, the answer to the "why me" question does relate to something they did, such as smoking or drinking heavily. These people can have a much harder time living with their choices because they feel guilty about doing something that could have caused their cancer. Their job is to forgive themselves. If they just can't let go of that, living with the consequence of cancer is usually much harder. Many times it helps to talk to an oncology social worker or cancer counselor to make peace with this issue.

The bottom line in answering the "why me" question is that knowing the answer to the question will not change what happens next. Worrying about "why" drains people of energy which is better used in dealing with the illness. Consider getting some counseling if you find yourself unable to move beyond this question. Children should be told that while we do not know for sure why someone gets cancer, we do know that the child did nothing to cause the cancer. This point should be made often and clearly to your children.

Children are exposed to a lot of information about health and illness--in school, on television and in talking to their peers. Some of this information is accurate and some of it is not. Some of it may be misunderstood. Ask your children to tell you what they know or what they have heard about cancer before you talk about it. In many instances, you can honestly say that doctors do not know why a parent has cancer. You should also make it clear that cancer is not contagious and there is no risk of anyone else in the family "catching" it. In cases where a person's behavior may have helped cause the cancer (smoking and lung cancer) it is best to admit that, and express regret. Children expressing anger is normal and should be expected. Redirecting those emotions to the present and future, however, help turn the situation to a more positive light.

How Might My Advancing Cancer Affect My Child's Religious Faith?

For some families, a strong faith makes all the difference in getting through life's biggest hurdles. During cancer treatment, faith can be an ongoing source of comfort when the going gets rough. For some, faith is tested in unexpected ways during the cancer experience. Children at any age may also be asking questions about how God or their higher power could allow their parent to have cancer, especially if there is a chance that a parent might die.

How you address this with your children is a reflection of your own beliefs. The issue of why bad things happen to good people is one that many humans struggle with. Do you believe that people get cancer as some sort of punishment for past mistakes, or is cancer a random event? Your own answer reflects who you are, your family beliefs about these things, and your own philosophy of life. At times like these, a talk with a spiritual counselor or leader might bring comfort or help you to refocus your spiritual direction. Do not hesitate to reach out for help for yourself and your children. Sometimes your spiritual advisor can help you explain things better to your child—which soothes you in the process

The word "faith" implies that trust or belief is necessary. So faith is not a "proven" or scientific theory. Therefore faith is more about asking questions than giving out answers—more about the process of searching rather than knowing it all. For instance, if you believe that your higher power is merciful and not punishing, you may want to share that belief with your family. If you are not sure exactly how religion fits into your life, it's ok to share that uncertainty. You can say something like "I'm not really sure at this point how I feel-- some days I'm really angry and not sure what to believe." By being honest you lay the foundation for more truth and openness within the family.

You may be feeling quite angry about having cancer back and feel you have to hide this anger from your children. But it's better to talk about your anger at the cancer. Be very sure not to direct your anger at the children. Encourage them to express their anger to you. Show them that being angry doesn't mean that you will fall apart, or that your family will suffer more. Show them that calming talking about these feelings can even make you closer as a family. Explain to your children that you know that some of their angry feelings are not directed at you personally, even though it may sometimes seem like that. Tell them that you understand the cancer is the real culprit and you share their feelings. Make this a bonding experience and find release over the anger together.

Children, depending on their age and personality, often try to protect their parents from their true feelings. We all do this to one degree or another with people we love. Asking your children if they are angry and assuring them that these are normal feelings may open the door to a necessary and healing discussion. Often underneath the anger is a profound sadness which needs to be shared in order to move on. While these feelings can be painful to express and to listen to, getting them out into the open can take away some of their power and help people to regroup and feel closer.

There may be times when friends or relatives try to reassure you with comments like "God doesn't give us anything we can't handle," or "God must have a reason that this has happened." While people say these things with the very best of intentions, if you are struggling with spiritual doubts, such comments might only increase the amount of stress you're feeling. Sometimes people say these things because they just don't know what else to say. It can get very annoying and even make you angry at their insensitivity. Sometimes this can be a good topic to talk over with another cancer patient or your nurse or support group. They will understand where you are coming from. How to respond to such comments? Usually this is a battle you just don't want to fight. Since people are trying to help, just a simple "thank you" may be the best response.

How Do Children React To A Parent's Potential Death?

Of course, children react individually to this complicated and heartbreaking issue. The answer depends on many factors such as the child's personality, his or her relationship to the sick parent, the age of the child, his or her maturity, and the child's developmental needs-- along with how close or distant the death is. Some children refuse to believe that their parent is seriously ill and demonstrate this in their behavior. For instance, they may refuse to accept their dad's inability to play ball with them, become whiny and irritable, and act out their sadness and anger by refusing to go along with the family rules.

Sometimes children will withdraw and isolate themselves from others in the family or their friends. They may refuse to listen to an explanation of what is going on or pretend that nothing is wrong. Children may regress and do things they did when they were younger, such as having trouble separating from the parent to attend school, picking fights with a favorite sibling, or changing toileting habits that had been under control. This change in behavior can be very upsetting for a parent. And these things happen when parents have less energy than usual to deal with them. Children often "act out" because they don't have the words to "talk out" their distress.

Anger is probably the most common reaction to the stress associated with a serious illness. Anger is also one of the more difficult issues to deal with directly. Many of us have been told, in one way or another, that it's not ok to be angry. People can spend a lot of energy hiding such feelings. Then along comes a situation like cancer and we aren't supposed to express anger!

Being angry doesn't mean that you are less of a person or that you are not coping well. Anger is a valid response to the unfairness of life and needs to be recognized as such. If you as the patient or family member can claim your right to feel cheated because of the impact that cancer has had on you and your family, it will be easier for your children to express these normal feelings. Trying to suppress such feelings takes up energy that could best be used elsewhere.

Remember that teenagers are already usually somewhat rebellious and don't like feeling different. Feeling angry about the illness is another layer to add to their insecurities and anxieties. If they won't talk to you as the parents, they may open up to other adults such as teachers, church leaders, or coaches.

Isn't Having A Positive Attitude Crucial To Fighting The Cancer?

In recent years, much attention has been paid to the importance of having a positive attitude. Some go so far as to suggest that such an attitude will prevent the progression of disease or the possibility of death. Patients are even told that they will never beat the cancer if they don't stop feeling "sad," "bad," "depressed," or some other so-called "negative" reaction. This kind of message is destructive to patients who must already deal with having cancer and a recurrence. They are fighting for their lives and then have to deal with feeling responsible for causing their own illness! Please do not allow others' misguided attempts to encourage positive thinking to place the burden of your cancer on you. That is not fair or even accurate.

Cancer is not caused by a person's negative attitude nor is it made worse by a person's thoughts. You might be better able to manage your cancer if you are can look at things in a positive light, but that is not always possible either. It is much healthier to admit that cancer can cause you or your loved ones to feel sad. Once you can admit the reality, it is much easier get on with your life, whether that life is measured in days, months or years. Some of those days will be good days, some of those days will be not so great. Most of us know that this is the natural course of life anyway—with cancer or without it.

People may tell you about studies which have been done to prove that patients with a positive attitude live longer. These studies often offer anecdotal evidence (people's stories) based on too few patients and questionable research methods. No solid, well-accepted research has shown that a patient's attitude has anything to do with whether the person will live or die. There are patients who live longer than they are expected to, but we do not know why. If we did, we would certainly use that information to try to help many people. In the meantime, having a positive attitude will help you live each day more meaningfully.

Depending on the age of the children, parents might want to plan for ways to distract them from the illness. Ask for help from people in your family or support network. It may be easier for someone else to listen to the child's distress and to arrange for activities that will distract her or him from the sad realities of a parent's impending death.

How Can I Help My Child When I Have So Little Energy?

This is probably the one of the toughest parts about dealing with advanced disease. There may be days when treatment side effects are harsh and you don't have an ounce of extra energy to spare--days when it's hard enough to figure out how you are going to get through it yourself, let alone deal with what your children may need from you.

The ages of your children will influence how you respond to their needs. Younger children who need a great deal of attention may seem harder to manage than those who are more self-sufficient. All children, however, have needs that you may not be able to meet. Feeling guilty about having cancer is another burden that you don't need right now in your life. Think about this: if someone else in your family were ill, would you be there for them? The answer is probably yes. So as stressful as it is to deal with relationships which are tested by serious illness, you don't need to apologize for being sick. Eplain that you know how tough it is on everyone and ask for help in getting through the rough times together.

Your unique family circumstances will play a role in getting through those times when you have little to give to the family. In a two-parent family, adults can switch roles back and forth when one or the other parent is unable to fulfill their usual roles. Even in such families, the well parent usually feels more pressure to keep things going and needs to take an honest look at how they are managing with all the extra tasks. If you are the patient, you may suspect that your spouse is feeling tired and even resentful at times. That is to be expected, even though people usually have a hard time being honest about it. Any anger you perceive is likely not directed at you but rather at the situation. There will be times, however, when everyone has run out of patience. It's best to admit that you are at the end of your rope and need a break.

It's also a good idea to let children help in the day-to-day routines. Are there small jobs that your children might do for you that will make them feel they are included in a special way? Can they make you a cup of tea after school, bring your medicines to the bedroom for you, retrieve or sort the mail if you're not feeling up to it? Children enjoy having special jobs and being rewared with praise. Helping you makes them feel special.

In families with a large support network, it's nice to have even more people to share the workload. However, the number of people is not the important thing. Some families just naturally roll up their shirt sleeves and get to work together. Others consider that an intrusion of privacy. Some family relationships are troubled before the cancer hit. Asking people for help is probably one of the hardest parts of having cancer in the family. For the most part, people prefer to be self-sufficient and take care of their own problems. However, cancer is not an "independent sport"—you need a team of players to compete. Family members often want to help so they are winning, too, when you ask for their help.

If this is hard for you to do yourself, is there someone in your family who can organize things for you? That person might take on the role of "team captain." Make a list of the things that need to be done. There may be someone who can easily pick your children up from an activity at the same time they are picking up their own children. There may be other people who can help during an emergency or on an "on-call basis" even if they can't help on a daily basis. Is there a stay-at-home mom who shops for her family every Thursday morning? If so, can she call Wednesday evening to see if she can pick something up for you? When people say to you "let me know what I can do," answer the question concretely with specific suggestions about what they can do.

What About The Times When I Can't Be There -- Mentally Or Physically?

There will be times when you must be absent either physically or emotionally. Even physically healthy parents must travel for work or for other reasons, and there are times when parents "leave" emotionally in their minds. This is the kind of test that we spend our entire life as parents preparing our children for. If we have laid the proper foundation, our children will be fine during short absences like this. It may not be either the parents' or the child's first choice, but both will get through any short-term separations because you have spent your life teaching your children they are loved and safe. Therefore they can tolerate short separations when they are cared for by others.

How Will I Know If My Children Need Extra Help?

Parents usually understand the behavior of their children and how they typically react to stress. We all have fairly consistent ways of reacting to upsetting events and parents can usually predict how children in a family differ from each other. When children are upset, they often react with a more dramatic version of how they behave normally. Quiet children may become more withdrawn, loud and active children crank it up a notch, and children with learning problems start doing worse in school. Some children complain of physical illnesses or may seem sad or lonely much of the time. Any type of change that persists for weeks may be a signal that the child needs more attention.

It may be useful to watch how your children play with their friends, what they say to their dolls, or what they draw in school. Because young children usually cannot talk easily about their feelings, their behavior will usually tell you what might be going on. We've talked before about the tendency of young children to regress in their development during times of stress. For example, a child might have trouble maintaining his or her toilet training. Although teenagers probably won't regress in such dramatic ways, they may argue more or be more distant as a way of acting out their distress. If the changes you see in your children are persistent and more extreme than usual, they probably need some sort of extra attention.

Remember that all problems are not necessarily related to the cancer. Sometimes it can feel as if cancer has totally taken over a family's life. People may need to work very hard to look beyond cancer as the source of all problems. This is especially hard when the disease has progressed, as everyone will be more upset than usual. However, look closely at your child's behavior and consider what else might be going on. Is your child having trouble adjusting to a new teacher; are they upset about not being invited to a party; are they struggling for more independence? While cancer in the family can certainly add a lot of stress, there may be other things going on in your child's life that could explain their behavior.

Try to get your children to tell you, if they can, what's troubling them. A simple "you seem very thoughtful these days (or sad, worried, etc.)--can you tell me what's troubling you?" may open a door to your child's behavior. Check with the school to see if the behavior is also noticeable there. Perhaps a teacher is incorrectly assuming that because a parent is ill, the child should be treated differently. Often this just makes the child feel more isolated. Check out all of the possibilities before you decide what needs to be done to help your child feel better.

Also remember that a child's personality is an important factor in how they will react to illness in the family. Some children are easygoing and "roll with the punches" while others create a "mountain out of a molehill." Different things work for different children in a family, so think about how you handled each of your children before cancer was part of your lives. Those same methods will often work again, even though the problems may be different.

It often helps to get as much information as you can about a problem from all possible resources. That means speaking with your child's teacher, guidance counselor, pediatrician, or a counselor on staff where you are being treated. It's also a good idea to ask your child what you might do to help them feel better. Don't forget to remind them that they had nothing to do with your getting sick or your cancer coming back. As illogical as this idea may seem to us adults, we know from experience with cancer in the family that children usually believe, at one time or another, that they had something to do with a parent's illness. If your child seems distressed and talking about it together doesn't help, it may be useful to talk with a counselor who has experience with cancer and how it affects families

Will The Experience Of Advanced Cancer Within The Family Leave My Children With Emotional Scars?

This is a question that many people struggle with and one for which there is no simple answer. A child will never forget the stress and pain of losing a parent from cancer. However, there will be many positive memories and many important life lessons learned through the cancer experience as well. The cancer experience will certainly have an impact on children, but it should not be assumed that it will necessarily be terribly harmful. Parents should do their best to be honest with their children and maintain as much normalcy in their lives as possible. That's a good start in helping children get through the experience. Over time, children may even become stronger people because of it.

There are many factors that influence how a child will grow and develop into adulthood. These factors include genetics, social class and culture, personality, education, spiritual orientation, and the quality of child/parent relationships. Even when the child has all of those things going for him or her, there are some who are never able to really take full advantage of all of their resources. There are others who, in spite of the most chaotic homes, achieve beyond what might be expected. So it's hard to make statements about how the experience of chronic illness will affect any particular child.

Most parents do the best they can to deal with a cancer diagnosis and treatment, and that's really all that can be expected. Unfortunately, people are rarely satisfied with their best efforts and might feel guilty and worried about what the experience of cancer will do to their child's future. It may help to remember that children are extremely resilient and even if you feel you are making mistakes with them, these mistakes will not destroy them. If you find yourself in turmoil about how you or your children are doing, consider getting some help. For many people, especially those young enough to have children still living at home, having a parent with advanced or recurrent cancer is probably the most stressful or serious situation they have ever faced. It is not reasonable to expect a young family to automatically know how to deal with all of the problems that come with a serious illness.

Many people don't want to seek help because they think that means there is something wrong with them. The more help you ask for, the more help you get, and the more resources there are in place for the rest of your family if you are not around to tend to all the details.

In the end, all you can do is your best. We have given you some ideas about how to help yourself and your family. None of us escapes life pains or problems. The best we can hope for is that we continue to grow and love each other through the experience.

Bereavement Resources For Children and Parents*

The following list of books, Web sites, and organizations may provide useful information for people who are going through a loss or discussing death with children.

Books for Adults

A Broken Heart Still Beats: After Your Child Dies, by Anne McCracken and Mary Semel. Published by Hazelden, 2000.

After the Darkest Hour the Sun Will Shine Again: A Parent's Guide to Coping With the Loss of a Child, by Elizabeth Mehren and Harold Kushner. Published by Fireside, 1997.

Bereaved Children and Teens: A Support Guide for Parents and Professionals by Earl A. Grollman. Published by Beacon Press, 1996.

Beyond the Innocence of Childhood: Helping Children and Adolescents Cope With Death and Bereavement. (Professional Practices in Adult Education and Human Resource) by David W. Adams and Eleanor J. Deveau. Published by Baywood Publishing Company, 1995.

Children's Conceptions of Death by Richard Lonetto. Published by Springer, 1980.

Children and Grief: When a Parent Dies by William J. Worden. Published by Guilford Press, 1996.

Explaining Death to Children by Earl Grollman. Published by Beacon Press,1987.

Gili's Book: A Journey Into Bereavement for Parents and Counselors by Henya Kagan Klein. Published by Teachers College Press, 1998.

Grieving: How to Go on Living When Someone You Love Dies by Theresa A. Rando. Published by Lexington Books: 1995.

Guiding Your Child Through Griefv by James P. and Mary Ann Emswiler. Published by Bantam, 2000.

Helping Children Cope With the Loss of a Loved One: A Guide for Grownups by William C. Kroen and Pamela Espeland. Published by Free Spirit Publishing, 1996.

Healing Children's Grief: Surviving a Parent's Death from Cancer by Grace Christ. Published by Oxford University Press, 2000.

Helping Children Cope With the Death of a Parent: A Guide for the First Year by Paddy Greenwall Lewis and Jessica G. Lippman. Published by Praeger Publishers, 2004.

How to Survive the Loss of a Child: Filling the Emptiness and Rebuilding Your Life by Catherine Sander. Published by Prima Lifestyles, 1994.

It's Okay to Cry: A Parent's Guide to Helping Children Through the Losses of Life (Workbook) by Norman Wright. Published by Waterbrook Press, 2004.

Never the Same: Coming to Terms with the Death of a Parent by Donna Schuuman. Published by St. Martin's Press, 2003..

On Children and Death by Elisabeth Kubler-Ross. Published by Touchstone, 1997.

Relative Grief: Parents And Children, Sisters And Brothers, Husbands, Wives And Partners, Grandparents And Grandchildren talk about their experience of death and grief by Dorothy Rowe, Judy Merry, and Clare Jenkins. Published by Jessica Kingsley Publishers, 2005.

Talking with Chidren About Loss: Words, Strategies, and Wisdom To Help Children Cope With Death, Divorce, and Other Difficult Times by Maria Trozzie. Published by Childhood Education, 2000.

The Bereaved Parent by Harriet Sarnoff Schiff. Published by Penguin, 1977.

The Bereaved Parents' Survival Guide by Juliet Cassuto Rothman. Published by Continuum International Publishing Group, 1997.

The Child and Family Facing Life-Threatening Illness: A Tribute to Eugenia Waechter by Tamar Krulik, Bonnie Holaday, and Ida S. Martinson. Published by Lippincott Williams & Wilkins, 1987.

35 Ways to Help a Grieving Child, by the Dougy Center Staff. Published by The Dougy Center, 1999.

The Death of an Adult Child: A Book for and About Bereaved Parents (Death, Value and Meaning) by Jeanne Webster.Blank. Published by Baywood Publishing Company, Inc., 1997.

The Worst Loss: How Families Heal from the Death of a Child by Barbara D. Rosof. Published by Owl Books, 1995.

Unspoken Grief: Coping with Childhood Sibling Loss by Helen Rosen. Published by Lexington Books, 1990.

Understanding Children's Experiences of Parental Bereavement by Jessica John Holland. Published by Kingsley Publishers, 2001.

What About the Kids? Understanding Their Needs in Funeral Planning and Services by The Dougy Center for Grieving Children. Published by the Dougy Center, 1999.

When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham. Published by HarperCollins, 2004.

When Children Grieve: For Adults to Help Children Deal With Death, Divorce, Pet Loss, Moving, and Other Losses by John W James, Russell Friedman, and Dr. Leslie Landon Matthews. Published by HarperCollins Publishers, 2001.

When The Bough Breaks by Judith Andrews Bernstein. Published by McMeel Publishing, 1998.

Write From Your Heart: A Healing Grief Journal by Kathrine Peterson. Published by Garrison Oaks Publishing, 2001.

Books for Children

A Candle for Grandpa: A Guide to the Jewish Funeral for Children and Parents by David Techner, Judith Hirt-Manheimer, and Joel Iskowitz. Published by Urg Press, 1993. Ages 4-8.

A Child's Book About Burial and Cremation by Earl Grollman. Published by the Centering Corporation, 2001.

A Child's Book About Death by Earl Grollman. Published by the Centering Corporation. 2001. Ages 6 and up.

A Pillow for My Mom by Clarissa Sgourous and Christine Ross. Published by Houghton Mifflin/Walter Lorraine Books, 1998. Ages 5-9.

A Quilt for Elizabeth by Bennette W Tiffault. Published by Centering Corporation, 1992. Ages 6-11

After Charlotte's Mom Died by Cornelia Spelman and Judith Friedman. Published by Albert Whitman & Co., 1996. Ages 5-7.

After the Funeral by Jane Loretta Winsch. Published by Paulist Press, 1995. (Ages 4-8).

Always and Forever by Alan Durant and Debi Gliori. Published by Harcourt Children's Books, 2004. Preschool-Grade 3.

Anna's Corn by Barbara Santucci and Lloyd Bloom. Published by Eerdmans Books for Young Readers, 2002. Ages 4-8.

Barklay and Eve: Sitting Shiva by Karen L Carney. Published by Dragonfly Publishing, 1997. Ages 4-8.

Bluebird Summer by Deborah Hopkinson and Bethanne Andersen. Published by Greenwillow, 2001. Ages 4-8.

Children and Grief: When A Parent Dies by William J. Worden. Published by Guilford Press, 1996.

Don't Despair on Thursdays!: The Children's Grief-Management Book (The Emotional Impact Series) by Adolph Moser and David Melton. Published by Landmark Editions, 1996.

Dusty Was My Friend: Coming to Terms With Loss by Andrea Fleck Clardy. Published by Human Sciences Press, 1985. Baby-preschool.

Goodbye Mousie by Robie H. Harris and Jan Omerod. Published by Margaret K. McElderry, 2001. Preschool-Grade 2.

Grandma's Purple Flowers by Adjoa J. Burrowes. Published by Lee & Low Books, 2000. Ages 4-8.

Grandma's Scrapbook by Josephine Nobisso and Maureen Hyde. Published by Gingerbread House, 2000 (Revised edition). Ages 4-8.

Grandpa Loved by Josephine Nobisso and Maureen Hyde. Published by Gingerbread House, 2000 (Revised edtion).

Help Me Say Goodbye: Activities for Helping Kids Cope When a Special Person Dies by Janis Silverman. Published by Fairview Press, 1999.

How It Feels When a Parent Dies by Jill Krementz. Published by Knopf, 1988. Ages 7 -17.

I Miss You: A First Look At Death by Pa Thomas and Lesley Harker. Published by Barron's Educational Series, 2001.

Lifetimes: The Beautiful Way To Explain Death To Children by Bryan Mellonie and Robert Ingpen. Published by Bantam, 1983. Ages: 6-11.

Losing Someone You Love: When a Brother or Sister Dies by Elizabeth Richter. Published by Putnam's Publishing Group, 1986. Grade 6 and up.

My Grieving Journey Book by Donna Shavatt and Eve Shavatt. Published by Paulist Press, 2002. Ages 4-8.

Sad Isn't Bad: A Good-Grief Guidebook for Kids Dealing with Loss (Elf-Help Books for Kids) by Michaelene Mundy and R. W. Alley. Published by Abbey Press, 1998.

Tear Soup by Pat Schweibert and Chuck DeKlyen. Published by Grief Watch, 2nd Revised Edition, 2001.

The Dying and Bereaved Teenager edited by John D. Morgan. Published by the Charles Press Publishers, 1990. Ages 12 and up.

The Empty Window by Eve Bunting. Published by Frederick Warne, 1980. Ages: 7 and up.

The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia. Published by Henry Holt & Co, 1982. Ages 4-8.

The Gift of a Memory: A Keepsake to Commemorate the Loss of a Loved One by Marianne Richmond. Published by Marianne Richmond Studios Inc. All ages.

The Saddest Time (An Albert Whitman Prairie Book) by Norma Simon and Jacqueline Rogers. Published by Albert Whitman & Company, reprinted 1992. Ages 4-8.

The Tenth Good Thing About Barnie by Judith Viorst. Published by MacMillan Publishing, 1987. Ages 5 and up.

Thumpy's Story: A Story of Love & Grief Shared by Thumpy the Bunny by Nancy C. Dodge. Published by Prairie Lark Press, 1985. Ages 6 and up.

Transitions Along the Way: A Guide to the Dying Process for Children and Young Adults by Stephanie Jonah. Published by Visions, 1999. Ages 9-12.

When Bad Things Happen: A guide to Help Kids Cope (Elf-Help Books for Kids) by Ted O'Neal and Robert W. Alley. Published by On-Caring Place, 2003.

When a Grandparent Dies: A Kid's Own Remembering Workbook for Dealing with Shiva and the Year Beyond by Nechama Liss-Levenson and Karen Savary. Published by Jewish Lights Publishing, 1995. Ages 4-8.

When Your Grandparent Dies: A Child's Guide to Good Grief (Elf-Help Books for Kids) by Victoria Ryan and Robert W. Alley. Published by Abbey Press, 2002. Ages 4-8.

On the Web*

Bereaved Families Online Support Center: wwwbereavedfamilies.net

GriefNet: www.griefnet.org

National Cancer Institute Website: Loss, Grief and Bereavement. www.cancer.gov/cancertopics/pdq/supportivecare/bereavement/patient

Self Help Magazine www.selfhelpmagazine.com/articles/loss/index.shtml

Other Organizations*

In addition to the American Cancer Society, other sources of patient information and support include:

Association for Death Education and Counseling
Telephone: 847-509-0403
Web site: www.adec.org

Candlelighters Childhood Cancer Foundation (CCCF)
Toll-free number: 800-366-2223
Web site: www.candlelighters.org

Centering Corporation
Toll-free number: 866-218-0101
Web site: www.centering.org

GriefNet
Telephone: 734-761-1960
Web site: www.griefnet.org

Hospice Foundation of America
Telephone: 202-638-5419 or toll-free: 800-854-3402
Web site: www.hospicefoundation.org

Mautner Project, The National Lesbian Health Organization
Telephone: 202-332-4436
Web site: www.mautnerproject.org

National Caregivers Association
Toll-free number: 800-896-3650
Web site: www.thefamilycaregiver.org

The Compassionate Friends
Toll-free number: 877-969-0010
Web site: www.compasssionatefriends.org

The Dougy Center for Grieving Children and Families
Telelphone: 503-775-5683 or toll-free: 866-775-5683
Web site: www.dougy.org

*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 or visit www.cancer.org.

Last Medical Review: 01/31/2006
Last Revised: 07/09/2008