Letter from OPACC's Parent Liaison
OPACC’s Guide for Parents of Children with Cancer (“Parent Guide”) has been developed by parents for parents. After all, who can better address the questions and concerns that parents of children with cancer may have than those who have been there themselves?
Our complete Parent Guide, as well as a companion guide for your friends and family, can be found as an electronic resource on our website at www.opacc.org. In this rapidly changing world, OPACC decided that an on-line guide would be the best and easiest way to ensure that the information we provide is current, fresh, up-to-date and inclusive while making editing, updating and adding links within them faster and easier. We encourage you to access OPACC and the Parent Guide from whatever device you feel most comfortable with…and to always know that your input and feedback are welcome. This guide is for you and its future accuracy and information will be done together with and by you!
A childhood cancer diagnosis more often than not comes to us out of left field, the very last thing we ever expected to hear. Once the initial shock begins to wear off, and we realize that this is the new reality we find ourselves in, the questions begin to bubble to the surface. Those questions and our unfamiliarity are myriad. For treatment related questions, it is our medical teams to which we can turn. As an organization whose main focus is parent and family support, OPACC always wants to provide answers and direction where we can. Through our various programs, we strive to give parents the answers they are looking for.
Over the many years since my own daughter’s cancer diagnosis, I have done my best to navigate the system for myself and others. Peer-to-peer support with its mutual safe sharing is vital! As Parent Liaison, I had what I called my “serendipity list,” those informational things you wanted to know more about, but which you often only stumbled upon as if by accident. We knew that parents were searching for a one-stop place to look for answers - answers that OPACC strives to provide in a variety of ways. This project came about through the committed efforts of many, but most especially, thanks go to Heather Stewart, an amazing OPACC mom, who organized her thoughts and put pen to paper on our behalf. From beginning to end, this project took a number of years and was written while her own daughter has been in treatment. I enjoyed working with Heather as a sounding board, source of information, collaboration, editing and encouragement to bring this document forward to OPACC’s Board and to see this finished product to completion.
Many thanks to the many people who helped make this happen, including our readers, Barb Johnson, Sarah Mueller for her always amazing graphic designs and to Sarai Porretta, OPACC’s Administrative Coordinator whose help and abilities make OPACC run smoothly every day. The document you will see today is truly reflective, not just of one family’s childhood cancer journey, but also of all the families we are privileged to meet and work with on a daily basis. Please treat it as the work in progress it is meant to be so that our links stay current, relevant and informative. We encourage you to please send your feedback and suggestions, including new additions and improvements to:
With sincere good wishes,
OPACC Parent Liaison