The power of pediatric cancer research

As a mother whose son died from cancer, I can still remember the exact moment when I saw his tumor on the screen.  I remember looking at the stats and studies, searching for a better outcome for my son. Despite the childhood cancer research community’s best efforts, I heard the road ahead for Mason was long and hard and, if he was lucky to survive, full of lifelong challenges and health concerns. And the only thing that could have saved him was the hope of more cancer research.

As anyone who has watched their loved one go through cancer treatment can attest, it is a nuclear explosion that devastates an entire family. Our family lived it for 15 months when my son, Mason, was diagnosed with a brain tumor at age three and died at age five. I had lived it over 20 years before, when my sister had gone through cancer treatment as a teenager. I have seen the power of research help my sister survive her cancer. But I have also seen the failure of progress in cancer research as I watched my 5-year-old son die from brain cancer.

{mosads}We have seen incredible progress and advancement in the knowledge of cancer and some pediatric cancers. But the road is long, and we have so much more to do to create treatments, remedies and eventually, cures for the thousands of diseases that make up cancer. We have even further to go to stop a child from being diagnosed every two minutes and eliminate childhood cancer as the leading cause of death by disease in children.

It was encouraging to see the president declare childhood cancer research as a national priority in his State of the Union and to have that priority reflected in his recent budget proposal. Regardless of party and in both the administration and Congress, we now know that everyone agrees that we must do more to combat pediatric cancer.

I was fortunate to join a recent meeting at the White House led by Vice President Pence with survivors of pediatric cancers and their families. And I have sat with countless members of Congress from both sides of the aisle to strategize about how we win this fight. We are grateful for those opportunities to find common ground.

As encouraging as it was to learn about the president’s efforts to prioritize pediatric cancer, it was disappointing to see that the recent proposed budget reduced funding for NIH and several other critical agencies that are spearheading cancer research within the overall budget.

Cuts to these agencies reduce the amount of research done for all types of cancer — including pediatric cancer. As Congress considers the president’s budget, it is vital that congressional leaders continue their bipartisan commitment to provide increased funding across all agencies that are undertaking this work including the NIH and NCI.

As part of my work, I have been able to meet personally with researchers who have the picture of a child whose parents donated their tumor tissue at their lab bench — these are the kinds of researchers that my organization helps invest in. They know the impact of what they can achieve despite the challenges of funding childhood cancer research. Sustained robust funding for childhood cancer research and cancer research is the difference between life and death for thousands of American children and their families.

This is a time of great hope for those who are standing side by side to fight pediatric cancer. We were able to achieve some significant bipartisan advances in the last Congress with the passage of the STAR Act — the most comprehensive childhood cancer bill in history — and the RACE Act — which will help develop new drugs and treatments for kids with cancer. But we need to remain vigilant and continue our momentum to ensure that we are fully funding research to win this fight against pediatric cancer.

We look forward to working with all that are committed to ending childhood cancers and cancer: The White House, Congress, government agencies, funders, industry and the childhood cancer community. Like all teams, we may not all agree on every play that is called, but our end goal is the same: to win. And winning means that we work together to create better cures and treatments for kids with cancer so that they can survive and thrive.

Towards the end of Mason’s life, he asked me if the doctors had any medicine left to fix him. Having to tell him no was one of the worst conversations of my life. When we are discussing these complex decisions about research funding and cancer research and progress, we must stay focused on doing everything we can so that a mom in the future can look into her child’s eyes and say “yes, the doctors do have the medicine to help.”

Danielle Leach is the senior director of advocacy and government relations for St. Baldrick’s Foundation. St. Baldrick’s Foundation is the largest private funder of childhood cancer research grants in the nation.