In Episode 58 of Game Over: c*ncer, hosts Dana Nichols and Val Solomon talk with Sarah, Executive Director of Big Nova Foundation, about what her family’s experience taught her about pediatric cancer care, access, research, and philanthropy. But her story raises questions that go far beyond one family. What should better treatment actually look like? Why are families still having to search for options that should be available to every child? And what can we do when the answers do not exist yet?
Watch Sarah’s episode here: From Experience to Impact: One Family’s Cancer Story | 58
Survival Is Not the Finish Line
When we talk about pediatric cancer, survival is often treated as the ultimate measure of success. But what happens after treatment matters too. Sarah’s niece survived, but years later she continues to experience the effects of the treatment that saved her life, from hormone and thyroid issues to cataracts, growth challenges, ADHD, and difficulties with reading. Her experience is a reminder that better treatment cannot simply mean keeping a child alive at any cost. It means continuing to ask how we can help children live healthier lives during treatment and long after it ends. Survival matters. So does what comes next.
Better Care Should Be Within Reach
Sarah’s family had the ability to travel when they learned her niece needed treatment that was not available close to home. Not every family has that choice. Across pediatric cancer care, access can depend on geography, finances, transportation, and whether a particular hospital has the experience or resources needed to treat a rare disease. That creates a reality where some families have to become experts in finding care while they are already trying to care for their child. Better treatment means building a system where families do not have to cross the country just to find the best option for their child.
The Answers We Don’t Have Yet
There is a reason Sarah’s experience changed the way her family thinks about research. When her niece was diagnosed, doctors were working with limited information and few answers. Today, Sarah can look at the research being done on T-cell leukemia and wonder why those discoveries were not available when her niece needed them. That frustration points to something important about pediatric cancer research: the treatments children need tomorrow have to be developed today. Research will not always produce the answer we hope for. Some ideas will fail. But failure can still move the field forward if we keep asking what comes next instead of deciding the work is finished.
What Happens When We Choose to Act
Knowing that the system needs to change is one thing. Deciding to do something about it is another. Sarah’s family chose to turn their experience into action through Big Nova Foundation, supporting organizations and research while trusting the people closest to the work to understand what is needed. Sarah has also taken that action into advocacy, working to support efforts that improve access to pediatric treatments and encourage more investment in pediatric drug research. Her approach is simple: if something is not working, ask what can be done differently. That mindset matters because progress in pediatric cancer is not going to come from one person, one organization, or one solution. It comes from people continuing to show up and push the work forward.
Why This Conversation Matters
Sarah’s story asks us to rethink what we mean when we say we want better treatments for children with cancer. Better means more than survival. It means fewer long-term consequences. It means access to care should not depend on where a family lives or what resources they have. It means researchers have the support to keep testing new ideas, even when the first one does not work. And it means families should not have to become advocates simply to find the care their child needs.
At Cannonball Kids’ cancer Foundation (CKc), we believe better treatments start with research that challenges what is possible today. Sarah’s story is one reminder of why that work cannot stop with the progress we have already made.
Listen to Sarah’s episode of Game Over: c*ncer to hear more about her family’s experience, the gaps she has seen in pediatric cancer care, and why she believes taking action is how we move toward something better.
Know a researcher, advocate, survivor, or family whose story needs to be shared? Email us at info@cannonballkidscancer.org to nominate a guest!
