It was early January, 1999, and I was driving my 1-year-old nephew, Dylan, to Anne Arundel Medical Center. After keeping him with me overnight, I was bringing him back to his mom. Unfortunately, Jill, my sister-in-law, wasn’t a hospital employee. She was a patient. Just 30 years old and a wife and mother of three children, she had just been diagnosed with the unthinkable: stage two colon cancer.
I remember thinking how well Dylan and his older sisters seemed to be handling her illness. Sure, Dad and Grandma were doing most of the duties that Mom usually did, but the kids still seemed like normal, happy children. They were managing and getting through daily life.
How do families cope with such devastating news? How do they sustain their day-to-day responsibilities and interactions? Do parents stifle their fears and hide their tears for the sake of their children? When children are diagnosed with cancer, how do parents remain brave when their worst fears have come true?
How children cope with the devastating news that they or someone they love have cancer begins with the diagnosis and with how those around them take the news. According to the American Cancer Society (ACS), “often, to a large degree, how a child reacts to a cancer diagnosis will depend on how their parents and other close adults handle the crisis.”
Some parents feel they must always project a brave and positive face. Others decide to protect their children by hiding the diagnosis. Neither of these parental instincts is in the best interest of the child.
Children sense when parents are hiding things; secrets have a way of coming out. The last thing a child needs is to learn that Mommy has cancer from the neighbor down the street. Secrecy and dishonesty isolate the child from his or her family and destroy the trust between parent and child when it’s needed most. Adults can show that they have fears, while keeping their rawest emotions private.
Information on the ACS website encourages parents to be truthful “in such a way that children are able to understand and prepare themselves for the changes that will happen in the family.” Medical terms should be broken down according to developmental age, and parents need to reassure children that cancer is not a result of something they did or didn’t do.
“While we know this is not true, most children believe this at some point during the cancer experience,” states the ACS website.
Children also generalize when the word “cancer” is used. They may reflect on a family member who has passed away from cancer and assume that history will repeat itself. It’s important to explain that there are more than 100 different kinds of cancer and many forms of treatment and outcomes.
According to the ACS, “children who are included in this experience from the beginning with truthful information in small doses will have less anxiety than children whose parents are more evasive.”
Painting a Picture of Treatment
When a child is diagnosed and receiving treatment in the hospital, the medical staff is the primary source of support to the child and their families. Sandy Romero is an Oncology and Hematology Child Life Specialist at Children’s National Medical Center (CNMC) in Washington, D.C. She and her colleagues use therapeutic play to assist their cancer patients. This includes artwork, medical play and pretend play using dolls or action figures.
“We clarify misconceptions that they can’t verbalize. We can problem-solve without fear and answer the questions that they may have,” says Romero.
When adults are diagnosed with cancer, they have questions about treatment and surgical procedures. Children have questions, too, but they need simpler explanations. Most have never been in an operating room or had an MRI.
At CNMC, a Child Life Specialist walks young patients through each medical procedure by showing them books, diagrams, anatomically correct dolls and photographs. The specialist uses toy models of CT Scan and MRI machines to explain what will be taking place. Photos show children what the room will look like once they wake from surgery.
Romero explains that when stress is at its highest for families of a cancer patient, it’s best approach the situation with baby steps. “Look at it step-by-step in small pieces instead of the whole broad picture,” she says.
When parents focus on getting through the upcoming procedure or treatment, it’s more manageable than focusing on the disease as a whole. The CNMC helps patients use guided imagery by having patients concentrate on a stress-free image and happy place. The staff urges parents to help their children take a mental break from everything going on and think of something else. It’s also helpful, when the child is out of the hospital and feeling better, to do something fun for the whole family.
Many support groups are available for parents in pediatric hospitals. For example, CNMC offers groups specifically for hematology and oncology patients’ families as well as other groups with a more casual setting, such as the Care Giver’s Club, where parents can get together and share advice while they make pillows for patients.
Gaining “Normalcy” at Home
Once the parent or child is home from the hospital, it’s helpful to get back to the family’s pre-hospitalization schedule in any way possible — family dinners, favorite television programs, bedtime routines. This simple adjustment can improve the family’s focus and mental health.
Parents restricted to the bed or couch can find quiet activities to do with their children. Reading and playing games can bring the family a sense of normal activity.
Pediatric cancer patients who can’t go back to school yet can work with an in-home tutor. When a child is ready to go back to school, hospitals can ease the transition by preparing the teachers and classmates. A school re-entry program, facilitated by the school’s guidance counselor or local pediatric hospitals, can explain to students what their classmate has gone through and how he or she may be different. Then, when the child returns to school, many of the other students’ questions have already been answered.
School psychologists and community social workers have access to many resources for families dealing with cancer. Parents shouldn’t hesitate to ask them for help.
Parents Reaching Out
For many cancer patients who are parents, daily needs are met by the legion of family and friends who step in and take kids to soccer practice, make dinner, and help with laundry and errand running. Where do families who don’t have this immediate support network turn for help? Often, hospital staff can point them in the right direction. Many cancer survivors and their families are willing — often eager — to lend a hand or offer experienced counsel. Support groups, mentors and community resources also provide emotional assistance and educational information on topics such as treatment, finances and new research. For example, Anne Arundel Medical Center offers seven different cancer support groups that can assist patients at various stages of cancer.
Many survivors have been surprised at the help that comes their way. From church or synagogue families. Co-workers. Other parents in the carpool. Old high school friends. People at the gym. Complete strangers. New and powerful friendships are often forged by the unhappy coincidence of a shared experience with cancer.
Web of Support
The Internet is an important tool for parents and children facing a battle with cancer. When family members need to keep loved ones up-to-date about a diagnosis and treatment, many now choose to skip the phone calls. Instead, they turn to e-mails, personal websites or blogs, or websites such as CaringBridge, which offers “free personalized websites to those who need a way to communicate with family and friends during an illness.”
These easy-to-use tools eliminate the need for lengthy phone chains to relay information that may be outdated by the time it gets to the end of the line.
Starlight Starbright is a nonprofit organization that supports pediatric hospital units through children’s events and programs. The organization’s online community, Starbright World, enables children in pediatric units throughout the country to communicate with others who are going through the same surgeries or treatment. This connection provides a powerful sense of belonging for kids who may feel afraid and alone. Starbright World can be used in the hospital or when children are back in the comfort of their homes.
I Can Cope is an interactive program available through the American Cancer Society. It provides patients and their loved ones with easy access information, statistics and support. The ACS website can also guide participants to local resources and support groups.
How Do I Help?
Sometimes people want to reach out to those in need but they may feel awkward and wonder how to approach the family. Romero suggests that you approach them by saying, “I’ve never been in this situation before, but I can help in this way.”
“Even if they don’t accept your assistance right away,” she says, “they will know that you’re only a phone call away if they need something. If you don’t personally know a family coping with cancer, but feel the need to help, there are many volunteer opportunities available. It’s as easy as pointing and clicking to help within your own community.”
A Mom in Charge Again
My sister-in-law says that her kids coped so well because of the support network that she had. Family, friends and neighbors made sure that her kids were where they were supposed to be on the right day and at the right time. Her girls continued to do well in school and sports and she didn’t even see any behavioral changes within her kids during that traumatic time in their lives. Their consistent routine, strength of support from others and Jill’s guarded optimism helped them through it all.
After two surgeries and chemotherapy, Jill has been cancer-free and back at the helm of her family for over seven years. She is forever grateful for the support network that filled in the gaps and pulled her family through during her absence.
Each August, children from all over Maryland who are living with cancer gather for a week at the American Cancer Society’s Camp Sunrise. This free camp in Harford County gives children a chance to be with others who are like them and simply be kids for a week. They camp out, swim, and do arts and crafts like at any other camp, but the camp has medical staff on hand to assist with their special needs. “It gives them a sense of belonging,” says Dawn Ward, spokesperson for the American Cancer Society. The staff is made up of volunteers, many who have been campers themselves in the past. The returning campers and counselors are thrilled to attend each summer.
Camp Sun Sibs is for the siblings of cancer patients. This weekend camp brings together children who can share their unique perspective of what it is like having this illness in their family.
For more information about either camp, visit the American Cancer Society’s website at www.cancer.org.
American Cancer Society
MD office: 410-721-4304
Starlight Starbright Organization
Children’s National Medical Center
Anne Arundel Medical Center
Tate Cancer Center, Baltimore
Washington Medical Center
Cancer Outreach and Education
By Jennifer Murphy
Jennifer Murphy is a freelance writer and mother who lives in Carroll County.