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Message from parents to parents
Hearing that your child has cancer is one of the most overwhelming experiences a parent can face. It often triggers a series of emotional and psychological reactions, commonly described in phases like the stages of grief, though each parent may experience them differently. It can feel overwhelming and frightening. But please remember, you are not alone. There is hope, there is help, and there is a community that will walk this journey with you every step of the way.
From the first moment of shock, parents gradually shift towards wanting to understand more about the childhood cancer journey and start gathering information and asking questions about their child’s condition. The flood of medical information, decisions one has to make, and emotions can be overwhelming. Parents shared in the National Cancer Institute’s guide, “Children with Cancer. A Guide for Parents”, “When we first learned Lilly had leukaemia, we walked around in a daze for weeks and barely slept. After the initial shock, we decided to learn all we could about this type of cancer. We also joined a support group at our hospital. Lilly is a fighter—it has been 5 years now and she is cancer free.”
Each family member needs resources to help them cope with the multiple stressors triggered by the childhood cancer journey. As a parent/caregiver one may experience informational, practical, interpersonal, emotional and existential stressors. (Existential stressors are the worries or pressures that come from thinking about the ultimate questions of life. Why am I here? What is the meaning of this? What is happening to my child, to us as a family?).
This journey may not be one ever expected to be taken, but within it, one will discover strength, courage, and love deeper than ever imagined. Each day brings its own challenges, but also moments of hope and healing. As a parent who has been there before Julian Cutland wrote a letter to newly diagnosed patients: “You have just started one of the periods in your life that you will always remember. You probably never thought that something like this could happen to your child. Perhaps you believed it was your right that your child would grow to adulthood with only the occasional illness or broken limb. You never anticipated an illness that could take your child's life. Now you know differently. If you are like most of us who have been down this path, then your outlook on life will be changed forever from this day onwards. You will need to develop your own methods for coping, depending on your own personal situation. “However, you may find the following guidelines a useful starting point. “
We hope that the guidelines, practical ways to cope, helpful approaches and information on this portal will help you and guide you to make informed decision about your child’s and your family’s journey. We hope that you find strength in yourself, your family and your friends to grow through this challenging time.
PARENT HANDBOOKS AVAILABLE ONLINE (SOME IN FRENCH AND SPANISH)
- CHOC Childhood Cancer Foundation SA. 2020. Handbook for parents. https://choc.org.za/wp-content/uploads/2024/07/choc-parent-handbook-2024.pdf
- National Cancer Institute. (n.d.). Children with Cancer. A Guide for Parents. U.S. Department of Health and Human Services.
https://www.cancer.gov/publications/patient-education/children-with-cancer.pdf - Children’s Cancer Oncology Group. 2011. Family Handbook for Children with Cancer. Second Edition. Cure Search for Children’s Cancer.
https://childrensoncologygroup.org/docs/default
source/pdf/COG_Family_Handbook_2nd_Ed_English_HighRes.pdf?utm_source - Children’s Oncology Group. 2021-2024. A New Diagnosis Guide for Teens and Young Adults. St Baldrick’s Foundation. (Available in English, Spanish and French). https://childrensoncologygroup.org/cog-family-handbook
- UK Children’s Cancer and Leukaemia Group. 2017. Children and Young People with Cancer. A Parent’s Guide. https://www.cclg.org.uk/sites/default/files/2025-02/cclg parents-guide-to-cancer-2019.pdf
- Anderson, Lindsey and Harrington, Lacey. 2007. Pediatric Oncology: Parent Education Handbook. Occupational Therapy Capstones. 6. University of North Dakota. https://commons.und.edu/cgi/viewcontent.cgi?article=1005&context=ot grad&utm_source
- Alex’s Lemonade Stand Foundation. 2018. Childhood Cancer Guides. (Offers guides, toolkits, and educational materials for families dealing with childhood cancer). https://www.alexslemonade.org/childhood-cancer/guides?utm_source
Related Parent Carers
Informational stressors for parents (caregivers) who have a child diagnosed with cancer
A child with cancer will always have a multidisciplinary team, and within that, each discipline (like nurses, doctors, therapists) may function as intra-disciplinary sub-teams to ensure consistency.
Educating your community of family and friends
Sharing a child’s cancer journey with one’s community can raise awareness, build understanding, and gather emotional or practical support. However, it is equally important to do so in a way that protects the child’s privacy and the family’s emotional wellbeing.
Parents often find it difficult to understand medical language
Parents often find it difficult to understand medical language used by doctors and healthcare providers during their child’s cancer journey