Building a community of support improves the lives of young cancer patients and their families.
Cancer and other life-threatening illnesses take more than a physical toll. Patients and their family members must deal with a life-altering experience and an overload of emotions, including guilt, sadness, anxiety and fear.
And when a young child or teenager is diagnosed with cancer, the news and following journey can be hard to deal with—and scary—for the entire family.
A community of support
Regina and Cliff Ellis have been there. One of their children, Alexandra, fought cancer for two and a half years before she died in 1995. The couple ran into gaps in support for families and kids facing life-threatening illnesses.
That's why they founded the Children's Cancer Association (CCA) in memory of their daughter—to help fill those gaps. CCA is an Oregon-based nonprofit organization that provides information, resources and support to seriously ill children and their families.
"We need more than medicine and incredible hospitals to help kids get better," says Regina Ellis, co-founder and CEO of CCA. "Families need a community of support to navigate this journey and to combat the sense of isolation, loss of everyday life, loss of control, anxiety and depression."
Families with the best quality of life during this tough time are those who look out for themselves and get support services when needed, says Ellis. But each family has to do it in a way that works for them.
"You need to reach out and have good lines of communication with family members, friends, neighbors, schools and clergy," advises Ellis. "Be specific about what you need, and encourage people to get involved in whatever way they can."
Friends and family
Becky Hamshar, of St. Helen's, Oregon, was shocked and overwhelmed when her 13-year-old son, Craig Hatch, was diagnosed with acute lymphoblastic leukemia (a blood cancer) in 2005.
After two and a half years of intensive chemotherapy, extended hospital stays, and several near-death experiences, Craig's chance of recovery is good, and he has only 13 months of treatment left.
"Fortunately we have a strong, caring family, and that has helped us through our difficult journey," says Hamshar. "We also received wonderful support from friends, the CCA and other childhood cancer support groups."
Hamshar's son, now 16, was shocked when he realized that he had cancer. "At first, I was more scared of needles than the actual disease," he says.
Craig valued the strong support, visits, and cards from his family, friends and classmates because it showed how much people cared.
"I was able to talk to my friends about how I was feeling and count on my parents and caregivers to explain what to expect with treatments, pain, etc. I like to know what's happening, because, for me, not knowing is more confusing and scary."
Communication is key
Dr. Ken Ensroth, a board-certified child and adolescent psychiatrist and medical director at Legacy Emanuel Hospital, explains that support from family and others is very helpful during this frightening time.
"There's a feeling of helplessness, and some children believe that they caused this illness themselves," says Dr. Ensroth. Thinking that you caused your illness is better than feeling totally helpless, for some.
Dr. Ensroth says that it's important to let that your child know that he or she did not cause the illness and that it's something that you can work on together to do something about.
This is a difficult time for siblings, too. It's important to consider their needs and to tell them age-appropriate information. "Don't overload your children with more information than they want or can handle," advises Ensroth. "Wait for your child to inquire and answer questions simply."
Take care of yourself so you can care for your kids
Dr. Ensroth cautions parents: "You have to take care of yourself well enough to take good care of your children. So it's important to get exercise [and] enough sleep, eat a balanced diet, and meditate or just relax."
"Parents, patients and siblings also need to express their feelings, to rage at the world for this happening to them," explains Dr. Ensroth. During this hard time, it's normal to have a huge amount of stress. "It's not a sign of weakness to seek help from a therapist or psychologist; it's a sign of strength."
- Children's Cancer Association Kid's Cancer Pages
- The National Children's Cancer Society
- American Cancer Society
- "Parenting Through Crisis: Helping Kids in Times of Loss, Grief, and Change" by Barbara Coloroso
- "Parenting Children with Health Issues: Essential Tools, Tips, and Tactics for Raising Kids with Chronic Illness, Medical Conditions & Special Healthcare Needs" by Foster W. Cline, M.D. and Lisa C. Greene
- "Forever Hellos, Hard Good-Byes: Inspiration, Wit, & Wisdom from Courageous Kids Facing Life-Threatening Illness" by Axel Dahlberg and Janis Russell Love
Published on April 4, 2008; updated on May 22, 2014.