The National Children’s Cancer Society
The National Children’s Cancer Society Partners With Families For Life
The National Children’s Cancer Society gets phone calls daily from concerned hospital social workers: another child has been diagnosed with cancer, and the family needs help.
As those calls come in, NCCS case managers connect with the families and create a comprehensive plan to help them with financial assistance, emotional support and other resources needed to cope with their child’s pediatric cancer and keep them healthy as survivors.
Unique among support organizations, the NCCS offers families a case manager for life.
“We stay with them for as long as they need us,” said Jessica Cook, program coordinator for patient and family services at the NCCS and a case manager for the past 15 years. “I have a family that I have been working with for over 10 years due to relapses and the child needing long-term care. Even if someone is an adult survivor and just getting yearly health monitoring, we want to make sure all his or her survivor needs are being met.”
A cancer diagnosis changes a family forever, according to the American Cancer Society. The experiences of the child, parents, siblings and extended family members are unique and complex. Each needs a support system to help them journey through their emotions and respond in a way that’s most healthy for themselves and especially the sick child.
“We meet an important emotional need by providing someone to talk to about their feelings and what they’re going through,” said Cook, drawing on her experience of walking alongside hundreds of families. “And it gives them comfort knowing I’m not going anywhere, that I’ll be with them throughout the cancer treatment and afterward.”
Some effective ways the NCCS suggests for dealing with emotions include:
- Give yourself permission to experience both positive and negative feelings and remember they are normal.
- Educate yourself about your child’s diagnosis and treatment.
- Become an active member of your child’s treatment team since no one knows him/her better than you do.
- Recognize which areas of your child’s life can be controlled and which cannot.
- Understand that some questions may not have answers.
- Find ways to express your feelings.
- Take care of yourself. Get enough sleep, eat properly, and exercise.
- Learn to accept help and support from others.
- Find a relaxing hobby like crocheting, knitting or woodworking.
- Spend time with your other children.
- Learn relaxation techniques, how to pace yourself and set priorities.
- Join a support group or talk with a friend, counselor or clergy member.
- Keep a journal. Record special moments, both happy and sad.
In addition to providing emotional support through the organization’s Family Support Program, NCCS case managers also help families obtain financial help for travel expenses related to their child’s treatment – such as transportation, meals and lodging costs – with their Transportation Assistance Fund. Additionally, they provide resources for needs beyond those offered at the NCCS, such as referrals for professional counseling through organizations like the National Association of Social Workers and the American Counseling Association.
Linda Fleming was referred to the NCCS in 2010 after learning her son, Sam, who is now 12, would need to travel out of state for continued treatment for neuroblastoma. He was diagnosed in 2007 and needed a new, specialized treatment.
“We had used up all other financial means (loans, credit cards, family assistance, benefits) to travel and the treatments were keeping the cancer stable. Sam was able to attend school and live normally in between the trips,” said Fleming. “Jessica helps arrange flights for my son and I to travel to New York from Texas for the treatments Sam needs.”
She credits the NCCS, which also helps pay cab fare and meals, with compassionately and consistently helping her family live as normal as possible.
“I am not sure what we would have had to face if we weren’t able to get the help we needed,” she said. “But I do know that with the NCCS and Jessica’s help, Sam is living a happy and stable life and we are grateful for every moment.”Not everyone the NCCS case managers assist is a current cancer patient. Cook recently helped a survivor, a young woman in her 20s, find medical help for some late effects she is struggling with as a result of her treatment for childhood cancer. She also referred her to the NCCS survivorship program, Beyond the Cure, for more information and resources on dealing with late effects.
“I haven’t talked to the family in five or six years, but she remembered us,” Cook said. “That speaks to the kind of connections we have with our families.”
For more information about how the NCCS can assist families and children during treatment, including additional resources, visit How We Help on the NCCS website.
About the NCCS
The mission of The National Children’s Cancer Society is to provide emotional, financial and educational support to children with cancer, their families and survivors. To learn more about the NCCS and its support services, visit thenccs.org. The National Children’s Cancer Society is a 501C(3) organization that has provided more than $61 million in direct financial assistance to more than 36,000 children with cancer. To contact the NCCS, call (314) 241-1600. You can also visit the NCCS on Facebook at www.facebook.com/thenccs.