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 Knowledge 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. 

Handbooks for parents are available online, and here are some resources we trust:

CHOC Childhood Cancer Foundation SA. 2020. Handbook for parents.

National Cancer Institute. (n.d.). Children with Cancer. A Guide for Parents. U.S. Department of Health and Human Services.  

Alex’s Lemonade Stand Foundation. 2018. Childhood Cancer Guides. (Offers guides, toolkits, and educational materials for families dealing with childhood cancer).