Medical Superheroes for the children who will not outlive their parents - Welcome to QOLA Care.

Today I had the privilege to attend a session put on by the QOLA (Quality of Life and Advanced Care) Team from McMaster Children's Hospital with almost 200 medical professionals, community partners and family partners and was reminded of how important it is to speak out about things others may not be aware of, but need to be.

Yes the compassionate act is now law, but the impact on pediatric palliative care is yet to be seen. We know our time with William is limited, no we are not denying hope - every day is a blessing we are grateful for and treasure, but we know his life expectancy is severely impacted by his condition, as well as his quality of life. So one must consider what will happen in those final days. As we have seen friends fight to have their children in their own loving home to die, or seen a brand new suite built at the hospital where families can stay with their child in their final days, and also have seen the community supports stretched to a max or worse yet, non-existent, I feel the need to step forward and say - hey wait a minute, you may not to think about the fact that our children can pass before us, but for those where this nightmare is a reality, can we please shine a light on how much we as a world could do for them and truly help? !

The harsh truth is that once upon a time, I felt that the death of a child was horrible and heartbreaking, but something that only happened to others or in the movies, and that's even when I was helping to raise Adam who came to my family with a terminal diagnosis. With our youngest my whole world turned upside down and I was plunged into a world where childhood illness, life changing conditions and pediatric palliative care were just part of our days. The QOLA team has been there for us right from the beginning, and I still remember the first time sitting down with them when I unloaded my soul and took way too much of Dr. Dave's time without him blinking an eye or making me feel bad for it. He and Cindy were with us when things were at the darkest, came to our home when the light began to shine a bit through the clouds, and have stayed nearby as we chart this unknown course ahead of us. The QOLA team is so much more important than palliative care - and yet that is so incredibly vital. They also help us try to make sure William has our truest hope for him - a good quality of life.

What does that mean? It means they help us monitor medications, they help us manage pain control, they help us identify where his needs are and his strengths. They have a monthly support group that helps me bring up issues I am dealing with at the moment, and resulted in us finding the gentleman who built William's special bed and began the trend of information sessions for us when we were trying to determine if we should or should not send our daughter to school. It is a place where we can discuss the guilt of going to work and not spending time with your child, when you know that time with your child is a precious commodity. We talk about anything and everything without judgement and without the need for censorship. and for siblings, the QOLA care specialists have been amazing at helping them feel important and heard, something that can be lacking in the craziest of medical crisis times.

Tonight I am attending another important meeting, the Inaugural Luke's Legacy Research Rounds, started by an incredible friend in memory of her son who passed just this past fall, followed shortly after by a meeting with the Love and Encouragement 2021 group, a group meeting for 52 weeks being led through the journey of self compassion for medical parents by an experienced medical mom who continues on in memory of her child, and I am again impressed by this amazing village of medical parents that I have found myself in.

So what am I asking from you, my dear friend?! I'm not sure yet. I know I need to learn more, and as I do, I guess I am asking you to keep your eyes and ears out as well. Listen to others when they talk about the Compassionate Act and pediatric palliative care. I promise on my part to keep bringing you information as I find it and discover ways for us all to help!

For more information on the Compassionate Care Law: https://www.thestar.com/news/canada/2020/12/16/compassionate-care-becomes-law-in-ontario.html

For more information on the Nancy Rose Act: https://www.cbc.ca/news/canada/hamilton/nancy-rose-1.5154598

For more information on QOLA Care: https://www.hamiltonhealthsciences.ca/mcmaster-childrens-hospital/areas-of-care/services/quality-of-life-advanced-care-program/