Awareness

September is Pediatric (Childhood) Cancer Awareness Month. Admittedly, I didn’t know this until September of 2022. Even more painfully, I didn’t take action. 

The truth is, when Jack got sick, all I could do was make sure he got better and could resume his life as a teen. During those years, I was juggling a full-time-plus career, a kid in high school, Jack in middle school between cancer treatments, a husband, and a house. It felt like a lot.

You wouldn’t believe how much I miss those days.

During the long days of Jack’s cancer, J and I became shockingly aware of how little research and funding is directed toward pediatric cancer. We wanted to do something about it. Over the last year, I have found my purpose somewhere in the pediatric cancer world. What that looks like is ever evolving.

This blog has a unique purpose: grief, awareness, and advocacy.

I touched on grief in my last blog, and all of my blogs will undoubtedly reflect deep grief. But it is also my tribute to Jack to bring awareness and change to pediatric cancer.

I hate cancer, but it shapes who I am today. It took my little boy away. A piece of me is missing because of it. But learning, educating, advocating—all of it allows me to fight back.  

Our deep dive into pediatric cancer research began when we were desperately searching for options for Jack after his treatments stopped working. Again and again, we learned that promising T-cell therapies had failed in trials. The one option available to Jack failed for him, too.

That search opened our eyes to something we had never fully understood before: pediatric cancer research is drastically underfunded.

Only around 4% of federal cancer research funding goes to childhood cancer.

4%.

That is not a typo.

That reality is why J and I, along with a small core group and the help from many of you, pushed for state-funded pediatric cancer research here in Iowa. That effort was successful, and Iowa is now among a small number of states investing state dollars directly into pediatric cancer research.

It is an important start. But research takes time, infrastructure, scientists, clinical trials, philanthropy, and sustained funding. Three million dollars a year will not solve pediatric cancer, but it can help build something much bigger. Our goal is to keep pushing so those dollars help create a strong pediatric cancer research hub right here in Iowa.

Recently, four other Iowans and I attended the Pediatric Cancer Research Symposium in Omaha, Nebraska. Nebraska is now in its 13th year of state-supported pediatric cancer research, and seeing what sustained investment has helped build there was powerful. Their researchers continue to expand programs, develop new collaborations, and search for treatments that are more effective, less harsh, and less toxic for kids. This is the kind of progress we want to see in Iowa.

But research funding is only part of the problem.

Pediatric cancer still receives far too little attention in the larger cancer conversation. Here in Iowa, our legislators were willing to recognize that gap and invest in our kids. I am incredibly grateful for that.

I am also grateful that pediatric cancer is beginning to receive more media attention. Cancer is a major topic this election season, and reporters have started asking important questions about how children fit into that conversation.

Sadly, kids are all too often left out. Major cancer organizations, both state and national, frequently talk about cancer without meaningfully including the children and adolescents who are fighting it.

When we talk about cancer, pediatrics must be part of the conversation.

Most people are shocked when they learn how underfunded pediatric cancer research is, how harsh many childhood cancer treatments remain, how often survivors live with lifelong health consequences, and how many medications given to children were originally developed for adults.

I want to raise awareness for Jack and for all the kids and teens who come after him. I want people to understand what children with cancer are facing. And I want fewer moms to ever know this kind of pain.

Please join me in keeping my promise to Jack and to all our children.

From September 8 through 11, Fairfield High School and Little Superheroes are partnering with Jack’s Promise for Go Gold Week: Pediatric Cancer Awareness.

The purpose of Go Gold Week is simple: to help our community understand that cancers affecting children and teens are different from adult cancers, yet pediatric cancer receives far less research funding and national attention.

Throughout the week, signs at Fairfield High School and the cross-country meet will share facts about pediatric cancer. We will also run a short social media campaign and distribute educational flyers at the cross-country and volleyball meets.

There will also be opportunities to donate to Little Superheroes, with proceeds supporting the Pediatric Hematology/Oncology Fund at University of Iowa Health Care Stead Family Children’s Hospital.

Awareness can lead to advocacy. Advocacy can lead to funding. Funding can lead to research. And research can lead to better treatments and more children coming home.

That is the change I want to help create.

Follow Jack’s Promise on Facebook and here on the blog throughout September. I’ll share more facts, stories, and information about pediatric cancer—and continue the promise I made to Jack: to keep fighting for kids.