By Ellen M. Craine, JD, LMSW, ACSW, INHC
Written for Social Work Today Magazine
In May 2014, my husband and I heard the words a parent never expects, or wants, to hear: "Your son has cancer." Before 2014, despite my training as a social worker, I knew little about this dreaded disease and certainly never thought, as a parent, it could happen to either of my children. Unfortunately, I knew too many other people whose children were stricken with cancer.
Our journey began on May 14, 2014—the day after Michael turned 11. Three weeks before, our family doctor heard a heart murmur on a routine physical. Following this distressing news, we scheduled an appointment with a pediatric cardiologist to confirm or deny this heart murmur, expecting to be reassured that this was something to be monitored and outgrown. We were unprepared when the cardiologist shared that there was in fact a heart murmur and that there was also fluid around his heart. She immediately made plans to have him sent to the pediatric ICU at the hospital. Within seconds, my son was placed in a wheelchair as we were escorted through the hospital's underground tunnel between the medical building and the hospital. Once in the pediatric ICU, things moved quickly as the doctors ran tests and hooked him up to monitors to figure out the cause of the murmur and the fluid. Eight days later, he was diagnosed with diffuse large B-cell lymphoma (a form of non-Hodgkin's lymphoma).
Coping with this traumatic event lead me on a journey of exploration that resulted in my facilitating a class for other social workers seeking postgraduate continuing education credits about childhood cancer and the loss and grief associated with a child's diagnosis regardless of the prognosis. Parents, the child, siblings, friends, and others feel an intense sense of loss and grief from the moment they hear the diagnosis "cancer," regardless of the prognosis. When medical professionals and social workers are aware of this and understand how to offer support for the process, everyone benefits. Knowing how to facilitate a family's journey on their difficult path is curial for social workers who work in any setting. The NASW Code of Ethics can guide us on how to be most effective in this work.
About Childhood Cancer and Statistics When a child with cancer appears in the media, that child usually has a terminal diagnosis and prognosis and the story pulls at our heartstrings. But not all children with cancer die. Thankfully, my son is one of the immensely fortunate cancer survivors. Children's cancer affects all ethnic, gender, and socioeconomic groups. Statistics tell us that there are approximately 350,000 adult survivors of children's cancer in the United States. According to Cure Search, 43 children are diagnosed with cancer daily. The average age of diagnosis is 6 years old. More than 40,000 children are in cancer treatment in one year. This equates to 1 in 640 adults between the ages of 18 and 45. This means the likelihood of a social worker coming into contact with a childhood cancer survivor, or a family member of one, during the course of our professional career is considerable.
There are three overall kinds of pediatric cancer: leukemia, which is cancer of the blood; lymphomas, which are cancers of the immune system; and solid tumors, which are cancers of the bone, organs, or tissue. Leukemia represents one-third of all cancer diagnoses in children, and is the most common form of childhood cancer. In leukemia, the cells are sick immune blood cells that do not work properly and crowd out healthy blood cells. Childhood leukemia can be chronic (slow growing) or acute (fast growing). Chronic forms of leukemia are rare in children.
Lymphoma is a cancer of the immune system and lymphoid tissues. The sick cells do not work properly to protect the body and they crowd out healthy cells of the immune system. This type of cancer is divided into two groups: Hodgkin's lymphoma and non-Hodgkin's lymphoma. Hodgkin's lymphoma is found in the lymph nodes, tonsils, bone marrow, spleen, and thymus. Approximately 1,180 children are diagnosed with Hodgkin's lymphoma in the United States each year, although it is considered rare in children younger than age 5. The majority of the cases are in teenagers between the ages of 15 and 19; it's the most common cancer of teenagers and young adults.
More than 1,000 children and adolescents are diagnosed with non-Hodgkin's lymphoma in the United States annually. Non-Hodgkin's lymphoma makes up approximately 7% of all children's cancers. It occurs more frequently with increasing age and twice as often in boys than girls. Non-Hodgkin's lymphoma is a general term for cancers of the lymphatic system that is part of the immune system. A particular family of cells (either B cell or T cell) have mutated and become cancerous. Scientists have identified more than a dozen different types of non-Hodgkin's lymphoma, but children and adolescents are most commonly diagnosed with Burkitt's lymphoma, diffuse large B-cell lymphoma, lymphoblastic lymphoma, and anaplastic large cell lymphoma.
Solid tumors make up the next general category of children's cancer. These lumps of sick cells stuck together can develop in the brain, kidneys, liver, and bones. The sick cells crowd out healthy cells and keep them from doing their job. Common types of solid tumors include neuroblastoma, Ewing sarcoma, and Wilms' tumors (kidney).
Brain tumors account for nearly 20% of childhood cancer diagnoses. Brain tumors in children occur in the central nervous system and spinal cord. As a general rule, brain tumors do not spread to other areas of the body. There are several different types of brain tumors including but not limited to medulloblastoma, primitive neuroectodermal tumors and pineoblastomas, gliomas (astrocytoma, glioblastoma), diffuse intrinsic pontine glioma, ependymoma, germ cell tumors, and spinal cord tumors. Solid tumor cancers in children include Ewing sarcoma, which occurs most frequently in the long bones of the legs or arms, the pelvis, chest wall, spine, and the skull. Ewing sarcoma can also occur in soft tissue and avoid the bone. Nearly one-half of all Ewing sarcoma cases appears in children between the ages of 10 and 20, and the diagnosis is more common in males than females.
Loss and Grief Regardless of the diagnosis and prognosis, loss and grief are very real from the minute a child is diagnosed with cancer. Feelings associated with loss and grief often begin before the official diagnoses are even rendered, so we discuss how loss feels as well as some exercises that may be helpful for social workers to use for themselves and with their clients and patients. We need to be tuned in to our own experiences with loss, before we can truly support a family through the grieving process. In the words of Caplan and Long in Grief's Courageous Journey: A Workbook, "Any loss that causes a significant change to our lives is a life loss." The loss does not have to be directly related to death; it may include, e.g., divorce, moving, or job loss.
I believe it is ethically sound for social workers to explore their own experiences with loss and grief personally before engaging in this work with clients who have experienced, or are experiencing, a loss. While the Code of Ethics does not have specific sections on that point, it does guide us towards ethical decision making. The Code of Ethics gives us an idea of how reasonable minds should handle a particular ethical scenario. In addition, there are standards of care for palliative and end-of-care work and for health care settings for social workers through NASW. All social workers should make themselves aware of these standards and get appropriate ethics and content consultation in this area. NASW code 2.05, Consultation, speaks to this subject. If you do not have a current copy of the Code of Ethics, you can and should order it through NASW Press.
The Code of Ethics, in sections 1.04 and 4.01, addresses competence of social workers to work with clients. Section 1.04 (a) indicates that "Social workers should provide services and represent themselves as competent only within the boundaries of their education, training, license, certification, consultation received, supervised experience, or other relevant professional experience." Section 1.04 (b) indicates that "Social workers should provide services in substantive areas or use intervention techniques or approaches that are new to them only after engaging in appropriate study, training, consultation, and supervision from people who are competent in those interventions or techniques." As part of developing our competence, we need to explore our own experiences with loss. We can do this by exploring and discussing our losses, how we have dealt with them, and the feelings we associate with them. Family and cultural norms vary widely and that should be recognized.
How was loss dealt with when you were growing up? These experiences can give us perspective on our own coping skills and resilience and help us to identify any biases we might have in working with our patients and their families. My experience with loss and grief as a child is limited until adulthood with the deaths of my grandparents and mother. The family norm was to "get over it" quickly and move on. Nothing from my prior experiences could prepare me for Michael's diagnosis and the feelings and emotions that existed. We are now three years from his last chemotherapy and we still have anxiety and fear with every doctor's appointment. Within my immediate family (my children and I), outward expression of feelings is encouraged. We talk about our experiences as often as we need to. I am encouraging a new way to deal with loss and grief and encourage resilience with my children from our experiences with Michael's illness and with the death of my husband, their father, in April 2016 from glioblastoma. I have found journaling valuable. Listing your own losses chronologically, then identifying any feelings or experiences associated with them is a beneficial exercise.
Now it's time to explore the losses that are experienced by the patient, the parents, the siblings, other family members, and friends. Always keep in mind that the worst loss is the death of the child, regardless of the specific cancer diagnosis or prognosis. But there are many other losses for the child: loss of friends, loss of regular activities, loss of being at home, loss of contact with family pets, loss of being able to be outside, loss of hair (and physical image), and loss of freedom of movement—and these are just a few. Some children lose limbs, organs, sight, or hearing. My son's losses were devastating to him and us: he couldn't finish his school year and he has struggled getting back into the rhythm of school even three years later. He couldn't eat much of the time because of the chemotherapy and he lost so much weight that he came dangerously close to needing a feeding tube. He lost regular contact with his older brother, friends, and family members.
I lost sleep. I also lost a sense of control. I lost time with my older son and husband. I lost work hours, leaving work behind until Michael stabilized. Some parents will face struggles with loss of income and even jobs, loss of time with other children and each other, and loss of comfort in having a "healthy" and "normal" child and life. The time invested in medical situations may lead to a necessary neglect of friendships. Siblings may feel they have lost one or both parents for significant periods of time while their parents care for the sick sibling. They miss the sibling and the security of their normal family life.
In the Social Work Dictionary, Baker defines grief as "intense and acute sorrow resulting from loss. It has many of the same symptoms as physical or mental illness, although it tends to diminish with time." Think about the losses just described above and imagine the emotional reactions possible when focusing on an uncertain future with the understanding that the idea of "normal" has been forever changed. These emotions can be as severe as incapacitation. On the brighter side, we may develop resilience and appreciation for the little blessings in life—certainly our grief gives us the opportunity to be more empathetic to others. Emotional reactions to grief are fluid, fluctuating daily or even hourly. Grief begins immediately at diagnosis.
The Social Work Dictionary goes on to describe grief as "a series of emotional stages or phases following an important loss that gradually permit adjustment and recovery. The individual typically reminisces, expresses emotions, accepts, adjusts to the new situation, and forms new relationships." Grief is work, but it does not mean that there is a definite beginning and end. It simply means that we get to a place where we can function in our new reality.
Sociologist Elisabeth Kübler-Ross, MD, detailed five stages to grief: denial, anger, bargaining, depression, and acceptance. These are similar emotions and feelings that all grieving people experience. We go through them in a way that is logical for us in our unique experiences based on our relationship to the individual who we are grieving, what we are grieving, and our life experiences that previously dealt with loss and grief, including family and cultural norms. How long this process takes varies based on the same and additional factors, but we all go through our own individual process in dealing with loss and grief. Grief is a progression of stages meant to normalize a deeply abnormal time in a person's or family's experience. Labeling the stages is meant to help a person make sense of the feelings and experiences, to normalize the experience for them. Grieving may never really end, but just become more manageable. Regardless, there are possible clinical diagnoses based on the DSM-5 that include adjustment disorders and PTSDs.
I urge you to examine your own feelings as you are reading this article. Are you feeling anxious or overwhelmed? Sad? Comforted? What, specifically, is triggering these emotions in you?
We social workers can help pediatric cancer patients and their families understand and live with their grief by providing emotional support and a listening ear for them to tell their story. This is done by being present and focused with good eye contact; validating feelings, whatever they are; and helping them find some sense of normality with their experience. Suggesting books to read and other resources can also be helpful. Perhaps the most important service we can provide is an open heart and sympathetic ear. If we do this, we can learn from our patients and grow as social workers and as human beings. This is easier when we are more in tune with our own grief experiences.
Here is a short list of suggested books that have been helpful in my family's and patients' journey you may wish to share with pediatric cancer patients and their families. The following books are helpful because they provide insight into the world of grief and offer hope and resilience to the reader:
• A Teen's Simple Guide Through Grief by Alexis Cunningham, Jalmar Press, 2001.
• The "Can" in Cancer by Julia Cook, National Center for Youth Issues, 2013.
• Alex and the Amazing Lemonade Stand by Liz and Jay Scott with help from Alex Scott, Paje Publishing Company, 2004.
• Educating the Child with Cancer: A Guide for Parents and Teachers — Second Edition, edited by Ruth I. Hoffman, MPH, American Childhood Cancer Organization, 2013.
• A Parent's Guide to Enhancing Quality of Life in Children with Cancer, edited by Ruth I. Hoffman, MPH & Sandra E. Smith, American Childhood Cancer Organization, 2014.
Childhood Cancer Awareness Month, a time when we wear gold ribbons in honor of all the children and their families who are experiencing childhood cancer, is observed each September. But we must be aware of their needs throughout the year. Childhood cancer is not rare; awareness needs to be constant. Childhood cancer remains the leading cause of death in children, and the rates of diagnosis seem to rise daily. As social workers, we know this disease will impact one or more of our clients. Increasing our own awareness of this dreaded disease and the loss and grief associated with a cancer diagnosis will allow us to be more prepared to deal with the facts.
Resources for Learning More About the Different Types of Childhood Cancer Learn more about the different types of childhood cancer in greater detail from the following:
• Alex's Lemonade Stand: www.alexslemonade.org
• American Childhood Cancer Organization: www.acco.org
• Children's Oncology Group: www.childrensoncologygroup.org
• Cure Search: www.curesearch.org
• St. Jude Children's Research Hospital: www.stjude.org