The Power of a Parent’s Voice: Bittersweet Advocacy for Pediatric Cancer Awareness

I wish I could say I always had a passion to advocate for kids diagnosed with pediatric cancer, but that wouldn’t be true. I didn’t even know September was Childhood Cancer Awareness month until my daughter Luna got diagnosed.  

It’s a generalization I know, but we tend to not champion a cause until it directly affects us. 

Here’s the good news - thanks to advances in treatments over the years, more kids are surviving pediatric cancer, of which there are several kinds. Pediatric cancer is not a singular disease. 

Now here’s the not so good news, the ugly truth – cure rates have come at a cost. In many cases, the intensity of therapies that kids receive are meant for adults, often causing childhood cancer patients to have significant long-term complications. And several cancers have seen no remarkable treatment progress in over a decade. Childhood cancer remains the NUMBER ONE cause of death in children from disease. 

I know about this ugly side of the story firsthand. My daughter, my 8 month old baby girl Luna, did not survive her diagnosis, a malignant rhabdoid tumor of the kidney. Children’s cancers are different than adult cancers. Rhabdoid tumors mainly affect babies and young children. They’re most common in infants between 11-months and 18-months old. The condition rarely occurs in adults. The prognosis for rhabdoid tumors is poor. 

When Luna died, my husband and I felt hopeless and broken. Our hearts stopped beating that night too, but our bodies remained on Earth. We wanted to rot in bed forever; to scream and let everyone know how unforgiving Luna’s disease is and what it took from us.  

Our child just died from cancer, now what? 

Advocating for childhood cancer after our daughter’s death has been one of the hardest things we have had to do, yet my husband and I continue on because at times it feels like, if we don’t, who will? Most of the unrelenting childhood cancer advocates I know are parents who have lost a kid to cancer.   

As the saying goes, it is a bitter pill to swallow. A phrase steeped in irony given the toxic treatments our daughter endured.  At the end of the day, what we are advocating for, we will never get. Luna will never be back with us physically. As badly as we want a cure for cancer, our reality remains the same. Our circumstances will never change...but another family’s might.  

So, we scream and scream, sometimes figuratively and sometimes literally, to try to get people to understand that raising funds for promising research does not benefit us. But even with that stinging reality we will continue to stay loud because it could help you and your kids and your grandkids. It is too late for our family, but it is not too late for yours. 

Bereaved parents can often feel the weight of the world in continuing their advocacy for what their children will never realize - a long life full of promise and dreams. Yet they continue on even when some turn away, too sad to watch…until it happens to them or someone they love.  

Know that we don’t advocate to scare you. We do it because what we have been through was so deeply painful that we don’t want anyone else to ever have to experience it. 

Everything we do for childhood cancer, we do in our Luna’s honor, but we also do it for future children that will get diagnosed. In the next 2 minutes somewhere in the world, a family will be told, “Your child has cancer.” We advocate because we wish we had never heard those frightening words. 

But we did.  

When there’s a cure for cancer and no more children die of this disease, we will rejoice with every ounce of our being alongside other families. And only then, perhaps, will we truly mourn, because it will still be too late for our Luna. So, until that day comes, and that cure is here, we’ll keep raising our voices to make a difference for others. We hope you will join us. 

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You can help support families like Maci’s - We have many creative ways to get involved, from bake sales to sporting events. Best of all, we’re here to help every step of the way. CLICK HERE to find out more and to host your own fundraiser. 

Have you heard about our Tough Cookies? All proceeds benefit our mission to raise funds for research to develop new, improved, and less toxic treatments for pediatric cancer — the #1 disease killer of children in the U.S. - CLICK HERE to read about Maci’s daughter Luna. When you send Luna's Little Moon Chocolate Chip Cookies, 100% of the proceeds will help fund critical childhood cancer research. 

Maci Belle McEvoy is Mom to Luna, Aspen and Navy. Aside from being a Mom to her three daughters Maci is a photographer, creator, the voice behind @grievingthemoon on Instagram and TikTok, the founder of The Little Moon blog and co-founder with Kate Vazquez of Together We Grieve on YouTube. She recently added author to her resume, as her book Mama’s Little Moon is now available, capturing the persisting bond of sisterhood and the power of imagination.

Author: Maci Belle McEvoy - edited by Rachel Roberge