Understanding Rare Pediatric Cancers
When a child is diagnosed with a rare cancer, families often find themselves navigating not only the illness but also a lack of readily available information. Pediatric oncology is a specialized field, and rare childhood cancers represent a particularly small and under-researched segment of it.
Unlike many adult cancers, which can develop over decades, childhood cancers are often linked to genetic changes that occur very early in development. Because of their rarity, doctors may have limited data to draw from, making it difficult to offer clear expectations about outcomes or treatment paths.
This uncertainty can place parents in an emotionally demanding position—caring for their child while also processing complex medical information and planning for an unpredictable future.
The Hospital Experience and Family Well-Being
Extended hospital stays can be physically and emotionally exhausting for families. Parents often describe nights spent monitoring medical equipment, learning new terminology, and making critical decisions while coping with chronic sleep loss and stress.
Health care teams increasingly recognize that treating a child involves supporting the entire family. In many pediatric units, this includes services such as:
- Child life specialists, who help children and siblings understand medical procedures in age-appropriate ways
- Palliative care teams, focused on comfort and quality of life alongside treatment
- Family support and financial counseling, which can help address the practical burdens associated with long-term care
These services aim to create a more comprehensive care environment, acknowledging that emotional and logistical support are essential parts of treatment.
From Personal Loss to Public Support
After Millie’s passing, the DeClercq family made the decision to channel their experience into helping others. The foundation established in her name focuses on providing practical resources and information to families newly facing a pediatric cancer diagnosis.
Rather than concentrating solely on awareness, the organization emphasizes tangible support—offering items and guidance that reflect firsthand knowledge of hospital life and caregiving demands. The goal is to reduce stress for families at a time when even small comforts can make a meaningful difference.
Advocacy and Research Awareness
In addition to direct family support, the foundation also participates in broader conversations about pediatric cancer research and policy. Advocacy efforts focus on encouraging continued investment in childhood cancer studies, improving access to advanced diagnostic tools, and supporting research into treatments designed specifically for children.
While progress has been made in recent decades, many advocates note that rare pediatric cancers still receive a disproportionately small share of research funding compared to more common adult cancers. Addressing this gap remains an ongoing challenge for researchers and policymakers alike.
Grief, Resilience, and Community
Grieving the loss of a child is an experience that can feel isolating. By sharing their story openly, the DeClercq family has helped foster conversations that allow other parents to feel less alone in their experiences.
Mental health professionals often describe this process as finding meaning after loss—where individuals, over time, discover ways to honor their loved one through connection, service, or advocacy. For many families, community support plays a vital role in this process.
Looking Ahead
Millie DeClercq’s legacy is reflected in the families who find guidance, the conversations sparked about pediatric cancer care, and the continued push for medical innovation that prioritizes children’s unique needs.
Her story serves as a reminder that progress often begins with shared experiences—and that compassion, combined with action, can lead to meaningful change.
Through education, support, and advocacy, the work inspired by Millie’s life continues to focus on one central goal: helping families face extraordinarily difficult circumstances with greater understanding, dignity, and hope.