Beyond the Standing Ovations: The Stark Reality of Childhood Cancer Funding

As parents who have endured the unimaginable loss of our beloved daughter, Athena Rose, to Grade IV Medulloblastoma—a malignant brain tumor—we are compelled to shed light on the critical issue of childhood cancer funding.

Our journey, chronicled on athenarose.itsabarkerthing.com, is not just about Athena’s battle but about the broader systemic failures that continue to leave children and families fighting this disease with inadequate resources, limited treatment options, and ultimately, broken hearts.

Athena’s Story: A Testament to Courage

Athena was a vibrant, joyful, and deeply loved child. In November 2019, our world was shattered when we were told the words no parent should ever hear: “Your child has cancer.” She underwent two brain surgeries and three rounds of chemotherapy, demonstrating resilience that humbled even the strongest among us. She fought through inpatient rehabilitation, relearning to walk, and endured three rounds of high-dose chemotherapy with stem cell transplants. For a moment, we had hope—she achieved No Evidence of Disease (NED) status.

Then, in a cruel twist, a routine procedure to remove one of her chemotherapy ports led to unforeseen complications. Just like that, the hope we clung to was ripped away. Athena took her last breath on June 30, 2020. She was only three years old.

Throughout her seven-month battle, Athena embodied an unparalleled strength that should never be demanded of a child. She deserved better. All of our children do.

The White House Applause: When Words Are Not Enough

Recently, a 13-year-old brain cancer survivor, D.J. Daniel, was invited to the White House, where he was honored with an ovation and named an honorary Secret Service agent. It was a moment meant to inspire, to recognize his courage—but for families like ours, it was a gut punch.

Because behind that applause, behind the carefully orchestrated optics, the same leaders who stood and clapped have done nothing to change the grim reality for children like D.J., like Athena, like the thousands still fighting.

The most devastating blow? Just weeks before, the reauthorization of five crucial childhood cancer bills was quietly removed from the 2025 federal budget. These included the Creating Hope Act, which had led to the development of 65 pediatric cancer drugs, and the Gabriella Miller Kids First Research Act 2.0, which would have renewed federal funding for NIH programs supporting pediatric cancer research.

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They stood. They clapped. And then they erased $190 million in funding for the very children they claimed to honor.

The Stark Reality of Childhood Cancer

Childhood cancer remains the leading cause of disease-related death among children in the U.S. In 2024 alone, over 17,000 families will hear the devastating words: “Your child has cancer.” That’s 46 families every single day. - cac2.org

Yet, despite the urgency of this crisis, funding for pediatric cancer research is abysmally low. Only 4% of federal cancer research funding is allocated to childhood cancers, forcing parents, researchers, and advocacy groups to beg for resources year after year. To put it into perspective, it would take 70 years of childhood cancer funding to match just one year of funding for the Space Force.

How is this acceptable?

The Human Cost of Political Decisions

These are not just numbers. These are real children—babies, toddlers, teens—who are robbed of their futures while decision-makers play political chess with their lives.

Take Will Rainsbury, a five-year-old diagnosed with Medulloblastoma, the same cancer that took Athena. Will endured surgery, radiation, and chemotherapy, only for his cancer to return. He passed away on Valentine’s Day 2019. His parents, instead of getting to watch him grow, channeled their grief into funding research through their charity, Little Hero.

How many more children like Will, like Athena, must suffer before childhood cancer is given the priority it deserves?

A Call to Action: Our Children Deserve More Than Symbolic Gestures

Our children don’t need honorary titles. They don’t need standing ovations. They don’t need performative sympathy from politicians who continue to defund their survival.

They need action.

In memory of Athena and every child lost to this disease, we are demanding change. We need Congress to reinstate and expand funding for pediatric cancer research. Organizations like the American Cancer Society Cancer Action Network (ACS CAN) are calling for:

• $30 million for the Childhood Cancer STAR Act

  
  

• $50 million for the Childhood Cancer Data Initiative (CCDI)

  
  

• $51 billion for the National Institutes of Health (NIH), including $9.988 billion for the National Cancer Institute (NCI) - fightcancer.org

We need every parent, every advocate, and every person who believes in the right of a child to live a full life to raise their voice.

Honor Athena by Taking Action

We will not stop fighting. We will not stop speaking out. Athena’s story, her light, and her love will not be in vain.

If you believe in real change, visit athenarose.itsabarkerthing.com. Share our story. Write to your representatives. Demand that childhood cancer be treated like the crisis it is.

Because until we see real action, no amount of applause will ever be enough.