Dealing with Loss

For most parents, a diagnosis of childhood cancer is terrifying, overwhelming, and difficult to believe. Life changes permanently for every member of the family. Fortunately, a growing number of children survive cancer-but even survivors and their families will experience some significant losses. The grief that comes with these losses is often overlooked, but it is important and deserves attention. Finding ways to cope with loss and grief in the midst of this very difficult time can help you and your family hold on to more of what is truly important.

These are some of the losses that parents experience:

  • "Normal life." You will have to find a new "normal" to replace the old.
  • Your healthy child. Your child will always have cancer as part of his life and medical history.
  • Innocence. Before diagnosis, you may have been able to shelter your child from some of the sadder or scarier parts of life.
  • Control. The demands of the cancer and its treatment will now take control of many of the decisions you make for your children and family.
  • Security. How you found security in the world may be threatened and may not work in this new life with the cancer.
  • Confidence in the future. Plans and assumptions about the future can be lost or seen to be much more fragile than before.
  • Perspective. Some families have not been exposed to significant suffering and the threat of death for children, and this exposure can change the way the world looks and feels to you.

Some losses cannot be anticipated at diagnosis but are experienced in the midst of the ups and downs of treatment. Just as each person's experience of treatment is unique, so each individual has unique losses and reasons for grief. The following are losses that many children with cancer and their families experience:

  • Hair. Hair loss is an obvious external loss, but it means different things for different people. For many parents, it is a constant reminder of the cancer and the loss of their healthy child.
  • Fertility. A side effect of some treatments is the loss or possible loss of fertility.
  • Amputations. To save your child's life, an arm, leg or eye might be amputated or enucleated. This will change how he functions long after the treatment is over.
  • Learning ability. Some cancers and some treatments affect the brain in ways that make it more difficult to learn, even after the treatments are completed.
  • Strength and energy. Your child may not be able to participate in some of his favorite activities because of loss of strength and energy.
  • Childhood. Many parents feel that experiencing cancer turns their child into an "old soul."
  • Personality. The stress of the experience and side effects of some medications can cause significant changes to your child's personality.
  • Previously normal activities. School, sports, social events, going to a neighbor's house, attending worship services, vacations, family outings-all these and more can be lost or reduced significantly during treatment.
  • Time and attention to other children. Often, the demands of the child with cancer mean parents have less time with other children in the family.
  • Freedom. Parents and children often have to adjust to a new lifestyle that does not allow as much freedom.
  • Income. Often, a parent reduces work hours or leaves a job to care for the child with cancer.
  • Time and attention to adult relationships. In order to meet the needs of a sick child, many parents find they have to sacrifice time for your marriage and other adult friendships.
  • Community connections. Some friendships and connections stay strong throughout treatment, but some parents report a falling away of support and a feeling of isolation.
  • Deaths of other children with cancer. Meaningful friendships are often made with other children with cancer and their families, and some of these children will not survive their disease or treatment.

Grief: The Good, the Bad, and the Ugly

Just reading these lists of potential losses may feel overwhelming. "But as many parents before you have done, you will find the strength to cope."

People have different styles of grieving (Martin & Doka, 2000). "Intuitive grievers," for example, experience feelings very intensely, often finding it helpful to express their feelings by sharing their stories and crying. Intuitive grievers can also have times of confusion, difficulty concentrating, disorganization, exhaustion, and anxiety. If you grieve in this manner, it is especially important to recognize what has been lost and find a way to express the feelings that come with these losses.

Another style of grieving is called "instrumental." People who grieve in this manner feel grief, but their feelings tend to be less intense than those of intuitive grievers. There is more of an impact on how the person thinks, and there is often a reluctance to talk about feelings. Parents experiencing grief in this manner focus on problem-solving and taking as much control of the situation as possible. Sometimes their energy level can be even higher than normal as they gather their energies for problem-solving.

Whatever style of grieving you have-intuitive, instrumental, or a mixture of the two-you have to do whatever helps lessen your grief. Parents in the same family sometimes have different ways of lessening their grief. For example, you may prefer to deal with situations and losses as they occur, and your spouse may want help in anticipating possible problems and coming up with ideas for coping ahead of time. Sometimes, parents need outside support to find ways to be supportive of each other.

However you deal with them, the losses you experience do matter-and the grief you experience is important. Ignoring these real experiences and feelings will eventually sap the energy you need to care for a child with cancer.

Parents who have learned to cope well with childhood cancer usually learn to do two things: to let go and to hold on. Letting go means recognizing the things that you can't control and letting go of the idea that these things are under your control. The ultimate success or failure of cancer treatment is outside of anyone's control. Letting go of this and other things out of your control leaves more energy for the things that you can influence and control.

Holding on means not letting cancer and its treatment take anything more from your life than it must. Don't give up anything that you can keep unless you decide it's no longer worthwhile. Some parents do experience a change in priorities and let some things go because they no longer seem worth the effort. A parent of a child with cancer once said, "We have no more family, it's only the cancer." This parent had given up too much.

A newspaper columnist once wrote, "Nothing good comes from cancer. Nothing ever will." This comment is belied by the experience of many parents of children with cancer who work hard not to let cancer have the last word on their lives and the lives of their children. In the midst of this very difficult time, many parents find gifts and growth. One parent remarked upon the personal and spiritual growth she had recognized in herself and commented that she guessed all parents of children with cancer could say the same thing.

While some parents are able to grow and in some ways become larger, other parents can get trapped in fear, grief, and bitterness and become smaller. Those who become larger have found ways to let go and to hold on all at the same time. They may have experienced being broken, yet in their brokenness they have found room to grow.

Losses are a part of the childhood cancer experience, and that means that grief is too. As you acknowledge your losses and cope with the grief, you will be freed to find ways to make life as good as it can be for your child, your family, and yourself for wherever the experience takes you.

The content of this article was contributed by Greg Adams, LCSW, ACSW, CT- Director, Center for Good Mourning, Arkansas Children's Hospital. It was published in the 'Mountain You Have Climbed: A Parent's Guide to Childhood Cancer Survivorship' by Beyond the Cure, a project sponsored by the National Children's Cancer Society.