Although survivors were able to grab the ultimate gold ring—life—they often suffer losses in the process. Losses come in all shapes and forms and may emerge or continue to exist for many years or even a lifetime. A universal loss is the sense that the world is a safe place. Childhood cancer robs the entire family of that blissful belief in the natural order of things—that children will have happy and carefree childhoods and that children never die before their parents.

Treatment for childhood cancer also can result in the loss of abilities, life prospects, skills, or body parts. A star baseball player can be relegated to the bench. A skier might lose his leg. An “A” student might discover when she returns to school that she is no longer gifted in mathematics. And grief over the loss of normal developmental opportunities, such as missing the time when teens start to date or play competitive sports on organized teams, are common. These losses put survivors out of step with their peer groups, which in turn limits opportunities to develop friendships. Thus, survivors must cope not only with physical changes but also with the alteration of their self-image.

The feelings most often associated with the normal grieving process are denial, anxiety, fear, guilt, depression, and anger. These completely normal feelings are sometimes viewed by others as a problem when they are actually a natural response to a life-changing event. It is important and necessary to acknowledge these feelings in order to deal with what cannot be changed and to make the most of your life, even if it has changed.

Part of coping with grief involves sharing it with loved ones. In our society, expressing these feelings is often socially unacceptable. Survivors and parents struggle to balance gratitude for life with sadness over the losses. However, parents and survivors may not view these issues in the same way, and conflicts may arise, creating an inability to rely on each other for support.

There is a need to educate relatives, friends, and professionals who work with families of people who have survived childhood cancer to enable recognition that grief over loss is very similar to the grief one feels when a loved one dies. Listening, understanding, and supporting the legitimacy of these feelings can be very powerful for the survivor and also help support the integrity of the relationship with the survivor. Suffering is diminished when it is shared. Siblings of survivors can experience negative long-term emotional effects and may need support and counseling (see details in Relationship with Siblings in Chapter 3, Relationships).

Parents of children who were treated at a very young age often have grief about things of which their children may not even be aware. In some cases, radiation at a young age can cause a change in personality and capabilities, so it may seem as if the child you knew and loved disappeared, and a new child replaced them.

You may find that at different ages, you view and feel your losses differently. A child of 10 may understand that his learning disabilities were the price he paid for cure from cancer, but a 20-year-old in college will probably have very different feelings as he is making career choices that may be affected by his disabilities. Similarly, a teenage girl may view potential infertility differently than an adult woman in love who is discussing marriage and contemplating having a family.

You can grieve fully, but later, still be stunned on occasion by a wave of grief. Everyone gets blindsided by a reminder of the loss. Stressors that can cause feelings to erupt include anniversaries, routine medical tests, or even a smell. Returning to the clinic for an appointment, developing an illness, or discovering a late effect can arouse strong feelings. The upsurge of physical or emotional responses doesn’t mean you have to go through the whole process again, but it can feel overwhelming.

Survivors and their families describe a multitude of ways to work through the grief associated with childhood cancer. Some talk with family members and friends; others share their emotions by asking for hugs or a shoulder to cry on. Some join support groups (in person or online) to talk about their feelings with others in similar circumstances. Others prefer individual, private counseling to discuss their grief and feelings of loss. Some survivors describe taking better care of themselves or doing pleasurable activities whenever they felt sad about the changes in their lives. Others talk about the importance of their faith or religion in getting them through the tough spots. You can also ask loved ones for help during difficult times.