Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about Childhood Cancer Advocacy.
by James Thomson, Resource Development & Community Engagement Coordinator, Ontario Parents Advocating for Children with Cancer (OPACC)
Childhood cancer affects 1600 Canadian children each year and of that number approximately 400 of these are in Ontario. Sadly childhood cancer also claims over 227 young lives each year; those who survive often require ongoing mental, physical, and financial support. In addition to the daunting statistics, childhood cancer also has a devastating effect on parents, siblings, extended family, friends and their communities.
It is for these reasons and many more that Ontario Parents Advocating for Children with Cancer (OPACC) was created; to provide support to families throughout their cancer journey and to let them know, they are never alone.
OPACC is truly a grass roots volunteer-led organization that was established by a small group of parents of children with cancer in 1995 and has grown over the years to include representatives from parent groups, parent contacts, family members, healthcare professionals and cancer support organizations from across the Province. Our members first and foremost are parents, guardians, survivors, or close relatives of a child/teen diagnosed with childhood cancer. This focus on membership has ensured that the voice of parents will remain the key driver in any work that is undertaken on their behalf. Since 1995 OPACC has collaborated on behalf of our children/teens and our families with appropriate regional, provincial and national bodies such as POGO (Pediatric Oncology Group of Ontario), Childhood Cancer Foundation – Candlelighters Canada (CCF), the Public Health Agency of Canada (PHAC) and the Canadian Cancer Society (CCS) Ontario Division.
OPACC’s overall goal is to be the parent voice for families with children diagnosed with cancer across the Province of Ontario. Other core goals include:
- To establish a Parent Liaison Program where deemed appropriate in collaboration with local stakeholders;
- Strengthen existing parent support groups;
- Support the establishment of new parent support groups;
- Establish a collaborative process for sharing and collecting information with parents through mentoring and educational activities; &
- Establish financial sustainability.
We have been involved in many initiatives over the past few years but the ones we are most proud of include the following:
- Launch of our Parent Facilitator training workshops in 2012
- Participation on the steering committee/cluster groups for POGO 5-year plan for Ministry of Health and Long Term Care
- Advocating for the passage of new EI legislation to benefit parents who need to take time off of work to care for seriously ill children
- Associate Member of the Canadian Cancer Action Network (CCAN)
- Establishment of numerous parent support groups throughout the province
Through our work in partnership with parent support groups and other childhood cancer organizations from across the Province and at the national level, we are making a profound difference in the lives of children affected by cancer and their families. Last year alone over 850 families were supported through OPACC through the following services and supports:
- Full Time Parent Liaison Services at the Hospital for Sick Children
- Drop-in coffee hours for In/Out Patient families at the Hospital for Sick Children
- Parent Support Group development in communities across Ontario
- Information Sessions
- Parent Facilitator Training workshops
- Community Information and referral
While many in our respective communities may never experience childhood cancer first-hand, it is likely that they know…or will know… someone who will. We recognize our work ahead is daunting, but with the help of our community partners and childhood cancer families, we know that together we can meet the challenge.
A note from CKN Editor, Susan McKechnie
Can a parent’s opinion change the outcome of care protocols for the better when it comes to the treatment of their child who has cancer?
Yes, absolutely. Parents are in tune with their child like no other person on earth so it leads to reason that parents should be active participants in the processes as they travel down this perilous path.
When our son Shawn underwent 33 rounds of radiation to try to eradicate what was left of his brain tumour, part of the process was to wait in recovery for a volunteer to escort us back to Shawn’s hospital room. This sometimes added another hour of waiting before Shawn could finally have his first meal of the day. After pleading our case, I was given permission to bypass this protocol and take Shawn back myself once the recovery nurse gave us the okay. Albeit a small victory but it meant a great deal to Shawn who just wanted to get on with his ‘normal’ day.
Imagine how many parents push for those small victories. Further envision the impact of all those victories if they were given one voice with the intention of implementing change to the overall protocol of care for all children with cancer.
OPACC is a support system based on that premise. Not only does it support the family by pulling together a group of those facing a similar journey but it joins those who have the perspective and passion to make change based on what parents face in their day to day challenges when their child has cancer.
When Shawn was diagnosed and as we rode the ups and downs of childhood cancer over the next few years, resources like OPACC were invaluable to us not only for advice and advocacy but as an avenue of empowerment when we often felt powerless.
Sue McKechnie – CKN Childhood Cancer Awareness and Advocacy Section Co-Editor
Sue McKechnie learned her young son, Shawn had a brain tumour in May of 2006. When he passed away 18 months later after the rollercoaster of diagnosis, treatment, hope and terminal illness, she realized that even though he was gone from this world, he continued to send her courage from another. The message was clear – get out there and help other families sharing this journey. Since then Sue has written the book ‘A Sippy Cup of Chemo; A Family’s Journey Through Childhood Cancer’ hoping to spread the message to other bereaved families that they are not alone. “It’s wonderful to talk to other parents who truly understand – the grief, the guilt and all the myriad of emotions you face. We didn’t choose to be part of this group, nor would we wish it upon anyone else but here we are and we need to support each other.” All the proceeds from her book are donated to Meagan’s Walk; benefitting brain tumour research at SickKids Hospital, a charitable organization whose committee Sue is a member of. Sue continues to advocate for funding and awareness of childhood cancer through blogging, speaking engagements and her work through Meagan’s Walk.