The most devastating thing for a parent to face is a serious illness in their child. Maintaining a positive temperament while ensuring your child gets the right treatment and adequate support can be overwhelming. During such stressful periods, family members and friends can help, as can resources designed for you and your child during and after treatment. In this article, we provide resources that can support families coping with childhood cancers in various ways.
Having the Conversation With Your Child
These conversations are hard. However, it is important to talk to your child and explain what may be coming in terms of treatment and recovery. The National Cancer Institute offers ideas on things to discuss based on your child’s age. The resource also includes information on:
- Ways to cope as a family, including support for your other children
- Keeping family members and friends who want to help, in the loop
Support for Education Concurrent With Treatment
Diagnosis, treatment, and recovery from cancer is a long, hard road. For adults, it may mean short-term disability leave or permanent job loss. For young children, it could mean absence from school or a gap-year. Cancer itself, and some of the drugs used for treatment, can raise additional challenges for kids such as impaired learning ability, issues with speech, memory loss, problems with dexterity, attention loss, etc.
With this in mind, several support services have been designed that include accredited school programs:
- American Cancer Society has developed a solid guidance that parents can refer to as they plan for their child’s cancer treatment and recovery
- An age-based curriculum by the LIVESTRONG Foundation can help pediatric cancer patients understand their disease and their treatment
- Accredited school programs in hospitals: Several cancer treatment hospitals have developed an accredited curriculum that young cancer patients can enroll in to prevent a gap in their learning:
Fertility preservation is an important consideration if the treatment could affect your child’s reproductive organs. Discuss this with your child’s care team if you have not already. Here are some organizations that help explain the process and are working to make fertility preservation for cancer patients a part of the standard of care:
- Pediatric Oncofertility Research Foundation has information on male and female fertility preservation.
- Livestrong Fertility
- Fertility Within Reach
Cancer care is expensive, period. Consider reaching out to the below organizations for financial support/resources:
- B+ Foundation provides financial support for families with children who have cancer
- Triage Cancer offers a legal and financial navigation program
- Family Reach offers a Financial Treatment Program that includes financial literacy and coaching
- Pink Swear Foundation offers support with rent/mortgage, gas, auto payment and insurance, and groceries
Here are some other organizations that offer support to parents of childhood cancer patients:
- American Childhood Cancer Organization (ACCO): along with resources, ACCO offers a 24-hour online peer support group for parents
- CancerCare for Kids provide support services for kids and adolescents
- Chai Lifeline’s programs are geared for the child, immediate family members, and the wider community
- Children and Clinical Studies explains the importance of children participating in clinical research studies
- Make-a-Wish Foundation helps fulfill the wishes of children with critical illnesses
- Miracle Flights provides commercial airline tickets to children (and their parents/legal guardians) in need of critical medical care available in a different geographic region
Surabhi Dangi-Garimella, Ph.D. is a biologist and research scientist who brings her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.