Responses of Family Members to Childhood Cancer The interactions between the parents of a child with cancer and their extended family are complex. Potential exists for loving support and generous help as well as for bitter disappointment and disputes. The diagnosis of cancer creates a ripple effect first touching the immediate family, then extended family, friends, coworkers, schoolmates, church members, and the entire community. Parents are usually surprised at the diversity of coping abilities exhibited. The extended family Extended family--aunts, uncles, cousins, grandparents--can cushion the shock of a cancer diagnosis by loving words and actions. Extended family members sometimes drop their own lives to rush to the side of the child with cancer and often remain steadfast for the years of treatment. Regrettably, family members may not be helpful, either from ignorance of what is helpful or simply because they are overwhelmed by events in their own lives. Notifying the family Notifying relatives is one of the first painful jobs for the parent of a child diagnosed with cancer. In times of crisis, family is refuge, and the news is usually quickly shared. Here is how one parent sent word to relatives: I called my sister and asked her to take care of telling everyone. She called my other sister, and together they told my frail mother. Paradoxically, the family members who may provide the greatest support may also be sources of added stress. Some extended families and even entire communities rally around the stricken family, while support never materializes for others. Several factors affect the strength of support: well-established community ties, good communication within extended family, physical proximity to extended family, and clear exchange of information on needs of the affected family. If any of these elements is missing, support may evaporate. Some families have support throughout treatment, as in these two cases: We had just moved 3,000 miles away from family and friends for my husband to accept a new job. So each family member and some close friends used their vacation time to fly out and take two-week shifts at our new house to help out. •  •  •  •  •   Shortly after Jesse relapsed, I was praying with my Bible study group. With four children aged one to nine, I just didn't know how we would manage with one parent 100 miles away at the hospital and one parent working. The group decided to collect enough money to allow my sister to quit her job and move in to take care of the other three children while I was at the hospital with Jesse. She stayed for eight months. It was such a wonderful thing. They didn't even ask us; they just said they would support her financially so that she could care for my children and keep the household running. Staying in touch The most important first step for families is to set up clear communication over what truly will help. Sometimes, the child is too sick or too fatigued for company, and this needs to be expressed. Establishing a telephone chain is a good way to keep family informed of the child's progress. One family member can be delegated as communicator, and this person will relay the information to another person who will then phone another. Some families leave updates on their telephone answering machines. When visits are welcome, make them brief and cheerful. Not only do long visits distress sick children, but they can also overtax a tired parent, as this one explains: There were many days I wanted to hide in bed and pull the covers over my head. I know everyone was well meaning and genuinely cared, but the constant stream of people through the house and phone ringing added to the stress we were already under. We already had a home care nurse coming five days a week and a physical therapist coming three days a week in addition to constant phone calls to follow up on blood work and tests, appointments to schedule, and family members to keep track of. Bubba, our dog, loved all the commotion, but the rest of us tired quickly. Helpful things for family members to do Families differ in what is truly helpful for them. The suggestions in this fact sheet are snapshots of what some families appreciated. True listening and working on maintaining the relationship is paramount. Connections can be made in many different, unique, and personally meaningful ways: Be sensitive to the emotional state of both child and parent. Sometimes parents want to talk about the cancer; sometimes they just need a hand to hold. Encourage all members of the family to keep in touch through visits, calls, mail, videotapes, audiotapes, or pictures. Be understanding if the parents do not want phone calls in the hospital. Remember that the child can hear all phone conversations when parents talk on the phone in the room. A cheerful hospital room really boosts a child's spirits. Encourage sending balloon bouquets, funny cards, posters, toys, or humorous books. Be aware that some hospitals do not allow rubber balloons, only mylar. Rubber balloons can be a choking hazard. Flowers are also not allowed in children's rooms since they can increase risk of infection. Laughter helps heal the mind and body, so send funny videotapes or arrive with a good joke if you think it's appropriate. Puzzles, games, picture books, coloring books, age-appropriate computer games, and crafts are welcome. Remember that attention spans are sometimes shortened by treatment, so keep it simple. A friend who was a nurse came to my son's room shortly before Christmas and brought an entire gingerbread house kit, including confectioner's sugar for the icing. We had a very good time putting it together. Offer to give the parent a break from the hospital room. A walk outside, shopping trip, haircut, dinner with a spouse, or just a long shower can be very refreshing. Donate frequent flyer miles to distant family members who have the time but not the money to help. A close friend (who lived three thousand miles away) had just lost her job and wished she could be there for us. My parents gave her their frequent flyer miles. She flew in for three weeks during a hard part of treatment and helped enormously. If you don't hear from a family member, call. Often silence means that he doesn't know what to do or say. Grandparents Grandparents grieve deeply when a grandchild is diagnosed with cancer. They are concerned not only for their grandchild but for their own child (the parent) as well. Cancer wreaks havoc with grandparents' expectations, reversing the natural order of life and death. Grandparents frequently say, "Why not me? I'm the one who is old." Parents express anguish at having to tell the grandparents the grim news. Cancer in a grandchild is a major shock to bear. Many parents report that grandparents respond to the crisis with tremendous emotional, physical, and financial support, as this parent's mother did: My mother was a rock. She put her busy life on hold to come help. She took care of the baby and kept the household running when I was living at the hospital with my very ill daughter. She was strong, and it gave me strength. Some parents express tremendous gratitude for the role played by the grandparents in providing much-needed stability to the family rocked by cancer. Caring for the siblings and running the household allow the parents to care for the sick child and return to work. Here, a parent gratefully recounts this type of support: We were very fortunate when Sean (age three) was diagnosed with neuroblastoma, because my parents live just twenty minutes from my house. Although it was difficult for them, they were extremely supportive, and we included them in the discussions with the oncologist. While my parents didn't have any answers for us, they did help to keep us grounded. When Sean had his bone marrow transplant, my mom was able to take six weeks off work to help out. She would stay with Sean in the hospital so I could work part-time. Two years after Sean was diagnosed he suffered a relapse. By this time, my dad had retired and was able to help by taking Sean to his chemotherapy treatments twice a week. Not only was this a big help to me, but it provided some very special bonding time for Sean and his grandfather. I don't know how we could have gotten through without the help of my parents. Other families are not so fortunate. Many grandparents are too old, too ill, or simply unable to cope with a crisis of this magnitude. Some simply fall apart, as this parent's mother did: My mother became hysterical when my daughter was diagnosed. She called every day, sobbing. Luckily, she lived far away and this minimized the disruption. We had to ask her not to come because we couldn't handle the catastrophe at home and her neediness too. It hurt her feelings, but we just couldn't cope with it. Other grandparents allow pre-existing problems with their adult child to color their perceptions of what the family needs. Sometimes cancer allows grandparents to renew criticism of the way grandchildren are being raised, as it did in this situation: While we stayed at the hospital the grandparents moved into our house to care for our eight-year-old daughter. They decided that this was their chance to "whip her into shape, teach her some manners, and get her room cleaned up." Our daughter was in tears, and we ended up saying, "We appreciate your help, but we will take over." Sometimes grandparents try to blame the parents for the cancer or make other kinds of hurtful comments. Disagreements can also arise if grandparents try to take charge. Criticizing parents' choice of doctors, hospitals, or treatment can be very disruptive and further stress the family's resources. Some grandparents, like this grandmother, simply cannot cope and withdraw from the situation: I will never, ever be able to forget how my mother let me and my son down. She never came to the hospital, saying, "He's too sick for company." I told her he would love to see her, that his little face just would light up when he had visitors. But she never came. She never offered to help at home when he was so ill. She just disappeared. It is hard to predict how anyone will react to the diagnosis of childhood cancer. Grandparents are no exception. Some respond with the wisdom gleaned from decades of living, others become needy, and some withdraw. It is natural in a time of grave crisis to look to your parents for support and help, but it is important to remember that grandparents' ability to respond also depends on events in their own lives. If problems develop, help can be obtained from hospital social workers or through individual counseling. Restructuring family life Childhood cancer does not strike only families with brave children and heroic parents. In the United States, the popular press has responded to people's fear of cancer by churning out story after story of people who faced the diagnosis with almost superhuman hope and strength. Families rally round, the community cheers, and human will triumphs over the evil of cancer. This simply is not always the case. Cancer strikes all types of families: single-parent families, those with two parents in the home, financially secure families, those with no insurance, families with strong community ties, those who have just moved to a new community, families of every size, type, and color. Most parents do find unexpected reserves of strength to deal with the crisis. They survive the years of stress and pain, emerging different and sometimes stronger. Still, expectations of heroism are not appropriate. Keeping the household functioning Every family of a child with cancer needs massive assistance. It is important for families to recognize this early and learn not only to accept aid gracefully but also to ask for help when needed. As discussed earlier in the chapter, most family members, friends, neighbors, and church members want to help, but they need direction from the family on what is helpful but not intrusive. In families where both parents are employed, decisions must be made about the jobs. It is better, if possible, to use all available sick leave and vacation days prior to deciding whether one parent needs to terminate employment. Parents need to be able to evaluate their financial situation and insurance availability. This requires time and clarity of thought, both of which are in short supply in the weeks following diagnosis. This couple worked out such an arrangement: I was eight months pregnant when my two-year-old son, Carl, was diagnosed. I went on maternity leave, but we needed to make arrangements quickly with my husband's employer to allow him time off to care for Carl in the hospital after I had the baby. Even worse, I knew I would have to deliver by caesarian section. Carl's protocol required him to be in the hospital for one week then home for one week from September through January. My husband worked out a schedule in which he worked 70 hours the week Carl was home, then was off work the week Carl was hospitalized. He then only needed to use ten hours of leave, and was able to stay with Carl in the hospital. Family and Medical Leave Act In August 1993, the Family and Medical Leave Act (FMLA) became federal law in the US. FMLA protects job security of workers in large companies who must take a leave of absence to care for a seriously ill immediate family member. It also covers employees who are unable to work because of their own medical condition, as well as when a child is born, adopted, or placed in foster care. The Family and Medical Leave Act: Applies to employers with 50 or more employees who work for at least twenty work weeks within a 75-mile radius. Provides twelve weeks of unpaid leave during any twelve-month period to care for a seriously ill spouse, child, or parent. In certain instances, the employee may take intermittent leave by reducing his or her normal work schedule's hours or taking leave in blocks of time. Requires employer to continue to provide benefits, including health insurance, during the leave period. Requires employer to return employee to the same or equivalent position upon return from the leave. Some benefits, such as seniority, need not accrue during periods of unpaid FMLA leave. Requires employee to give 30-day notice of the need to take FMLA leave when the need is foreseeable. Is enforced by complaints to the Wage and Hour Division, US Department of Labor, or by private lawsuit. The nearest office of the Wage and Hour Division may be located by looking in the US Government pages of your telephone directory. In Canada, a parent may be entitled to benefits under the Employment Insurance Act. Consideration is provided in the act for a parent having to leave work to provide care for an ill child. Entitlement to benefits is made on a case by case basis. Should a parent qualify, benefits are determined by the number of hours the parent has worked prior to making the claim. For further information, parents should contact the nearest Human Resources Development Canada office listed in the Government of Canada pages of the telephone directory. Marriage Cancer treatment places enormous pressure on a marriage. Couples may be separated for long periods of time, emotions are high, and coping styles differ. Initially, family life is shattered. Couples must simply survive the first few overwhelming weeks, then work together to rearrange the pieces in a new pattern. Here are parents' suggestions for managing: Share medical decisions. Take turns staying in the hospital with the ill child. Share responsibility for home care. Accept differences in coping styles. Seek counseling. Some marriages survive and some don't. However, it is usually marriages with serious pre-existing problems that are further strained by cancer treatment. This fact sheet was adapted from Childhood Cancer: A Parent's Guide to Solid Tumor Cancers, by Honna Janes-Hodder and Nancy Keene, © 2001 by Patient-Centered Guides. For more information, call (800) 998-9938 or see www.patientcenters.com.