Another Childhood Cancer Awareness Month has come and gone. They are a messy thing, awareness months. On one hand they are a time and place to educate others around a cause, a cause that is important to you. A time set aside to lay all you know out into the world around the thing that has impacted your life in unimaginable ways. You feel empowered, full of passion and ready to share. You start to post your reasons, your “why,” your most vulnerable and passionately charged words and images, only to find yourself counting the number of likes and shares which pale in comparison to your post featuring your sweet dog or a beautiful sunset.
Then it comes, the realization that not many can relate to “your” cause because it hasn’t impacted them the way it has impacted you. The spiral begins - you start asking yourself if any of it matters. Does anyone care about the heartbreak you have endured, the unfairness of a diagnosis blazing into your life uninvited, how things will never be the same for you, not since diagnosis day? You even start to compare your cause to other causes, questioning why some get so much traction, attention, bands of colors sweeping across the nation when it seems gold, which is the designated color for childhood cancer awareness, is hard to find.
For others, who are deeply connected into childhood cancer communities, they can feel a different kind of collateral damage for childhood cancer awareness month. Story after story, one heartbreaking image after another. You hear and see and feel the cries for change from every family that has come before or after you, pleading for less toxic treatments that won’t rob your child of their hair, vision, hearing, mental health or years of childhood spent fighting for their lives. You see parents begging for treatments that won’t cause a secondary cancer in their child’s little growing bodies. You see families who have run out of options. It is all at times, too much, too noisy and too painful.
To childhood cancer parents, if childhood cancer awareness month has left you feeling overwhelmed and exhausted and maybe a bit numb, I hear you, I see you and I am with you. It’s okay to be tired and set down the burden of advocacy if you need to. The beautiful thing about our community is how we rally around each other. We carry what needs to be carried for each other when it is too heavy for one to bear alone. So rest, regroup, focus on your family and needs. I am deeply grateful for those of you who carry the torch for us when we can’t.
I have been in the world of childhood cancer for over 14 years, living with a son who is challenged by the late effects of his brain tumor diagnosis and treatments every day. I have seen, heard, and felt the impacts of our collective journeys and cries for change. I am incredibly grateful for his survival and equally grateful for the progress I have been able to witness. I am deeply aware of how far we must go but when I stop to look around, I see the helpers, the ones making an impact in research, the ones looking holistically at care plans, the one analyzing late-effects. The ones responsible for making monuments, bridges, buildings and parks light up gold across the world. The ones creating waves in awareness in schools, the workplace and their own communities. The ones telling the rest of the world how to help.
It takes one conversation at a time, one moment at a time. It is happening, and we will never stop trying to make the state of childhood cancer better than when it found us. Another childhood cancer awareness month has come and gone, and I find a sliver of peace knowing that someone, somewhere has heard the cry, saw the need for change and has joined our mission.
Written by Mindy Dykes, Community Outreach Coordinator
My son was diagnosed at 6 weeks old with a brain tumor. It was massive and required emergency brain surgery and an aggressive plan to treat the remaining cancer cells. Connor made it through surgery, survived chemotherapy and a bone marrow transplant all before he was 7 months old. Now, my husband and I are navigating survivorship late effects, raising two teenagers and always striving to keep life in balance.
Your story of childhood cancer is powerful – it can raise awareness for what is needed in the world of childhood cancer research and even encouraging fundraising for vital research projects. See how your story can make an impact by filling out our Share Your Story form.