Erin Orion Abbott-Haines
Acute Lymphoblastic Leukemia Survivor/Thriver, Caregiver to her son, Advocate, Soul Doula
Childhood cancer is a devastating diagnosis that affects not only the child but also their parents and loved ones. In this episode of Navigating Cancer TOGETHER, I have the pleasure of having a conversation with Erin Orion Abbott-Haines, a childhood cancer survivor and mother to a childhood cancer survivor. Erin shares her insights and experiences, shedding light on the challenges faced by families dealing with childhood cancer. From the lack of funding for research and specialized treatments to the complex dynamics between parents and medical professionals, Erin provides valuable perspectives on the journey of childhood cancer that is often overlooked.
The Need for Funding and Specialized Treatments
Erin emphasizes the urgent need for increased funding for childhood cancer research. Currently, childhood cancer receives only a small fraction of the national budget, hindering the development of treatments specifically tailored to children's bodies and unique cancer types. She highlights the disparity between the number of different childhood cancers and the limited resources available for their treatment. Erin stresses the importance of developing treatments that address the specific needs and characteristics of childhood cancer, rather than relying on off-label adult treatments.
Childhood Cancer as a Chronic Diagnosis
Erin challenges the notion that childhood cancer is an acute illness that can be cured and forgotten. She explains that childhood cancer often leads to long-term late effects and disabilities that persist throughout a survivor's life. These late effects can manifest years or even decades after treatment, requiring ongoing monitoring and management. Erin shares her personal experience of dealing with late effects and the impact they have had on her daily life. She emphasizes the need for comprehensive support and care for survivors as they navigate the lifelong effects of childhood cancer.
"Cure is a fallacy we like to tell ourselves a lot of the time because there's never a fully tied bow on that box of that experience." - Erin Orion Abbott-Haines
The Power Dynamics and Advocacy Challenges
Erin delves into the complex power dynamics between parents and medical professionals in the context of childhood cancer treatment. She highlights the lack of control parents have over treatment decisions, as saying no to treatment is often considered child endangerment. Erin also discusses the emotional toll on medical professionals and the challenges they face in providing care. She shares her own experience of encountering a doctor who dismissed the existence of late effects, underscoring the need for improved communication and collaboration between parents and medical teams.
The Grief and Trauma of Childhood Cancer
Grief and trauma are inherent aspects of the childhood cancer journey, affecting both children and parents. Erin emphasizes the importance of understanding how grief manifests differently at each developmental stage. Preschoolers may experience fear and confusion, while older children and teenagers grapple with the impact on their identity and social interactions. Parents, too, navigate their own grief, which can come in waves and evolve over time. Erin encourages open dialogue and storytelling as a means of processing grief and finding support within the community.
Childhood cancer is a complex and challenging journey that requires comprehensive support, increased funding, and specialized treatments. Erin provides valuable information and an in-depth explanation of the gaps and struggles faced by families dealing with childhood cancer. By sharing her own experiences, she highlights the need for improved communication, understanding, and advocacy within the medical system. Ultimately, the goal is to empower childhood cancer patients and their families to navigate their unique journeys with resilience and hope.
Listen to the full episode to learn more about Erin and her works as well as her quest for improved childhood cancer treatment and financial support for research. Check it out by clicking the episode in the SmartPlayer below, on Amazon Music, or on your favorite podcast app.
Read the transcript here.
Childhood Cancer - National Cancer Institute, https://www.cancer.gov/types/childhood-cancers
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