OPACC and Child Life Reflection Letters Project

Dear Parent,

As members of Child Life and OPACC, Ontario Parents Advocating for Children with Cancer, we are writing to request your participation in a new project - to share your stories with other families! We are interested in developing a helpful binder which we hope to have available for families in the Oncology Program who would benefit from knowing how other families experienced having a child newly diagnosed with cancer. This binder would be a collection of 'reflection letters' from parents who are currently in the middle to end of their children's treatment protocol or parents who are writing years later about their feelings at the time of diagnosis including child/family's reactions and what helped them and their child most in dealing with the various issues and concerns.

The idea to develop a positive, easy to read binder came from YOU - our families in Oncology. We have been approached time and time again from families toward the end of their child's protocol wanting to share stories and their amazement at how they and their child learned to cope through their experience. Parents refer to the fact that their child was once angry and non-communicative, but ended up laughing and running through the halls at Sick Kids like they own the place. Although Child Life and other staff often reassure families that children do learn ways to cope once they know what to expect and find sources of support which help them, we know that this message can be more powerful if it comes from parents who have been there.

What we would like from you is a 1 - 2 page letter reflecting on:

• what is was like at the beginning when your child was first diagnosed

• what things helped you and your family cope

• lessons learned that other families could benefit from

To honour each family's privacy, we ask that reflection letters be addressed "Dear Parent" and signed using your first initial or descriptive name i.e. "Sincerely, Been There". All identifiable information should be removed from the reflection letters and all personal information shared in the accompanying form will remain confidential. Letters will be copied and added to a Parent Reflections binder to be shared with other families.

This project and insights gained from it may be presented for educational purposes.

For more information or to submit a letter please contact Erin Boyle, Child Life Specialist, Haematology/Oncology Clinic at (416) 813-5692, erin.boyle@sickkids.ca or Susan Kuczynski, Parent Liaison at (416) 813- 7654 x2878, liaison@opacc.org.

We look forward to hearing from you with your interest and comments!

Yours truly,

Erin Boyle Child Life Specialist Haematology/Oncology The Hospital for Sick Children

Susan Kuczynski Parent Liaison Ontario Parents Advocating for Children with Cancer The Hospital for Sick Children