In this week’s incredibly honest and profound episode, we sit down with Jeff Loving, a husband, proud NICU dad, and the author of Holding Onto the Light: A Father’s Journey Through Loss and Healing. Jeff shares the deeply personal, often unspoken, side of grief: the...
224: A son with Burkitt lymphoma at 8 year’s old – Reina’s Story
Podcast Show Notes
“My immediate thought was I’m going to lose my son. That was where my head went immediately.” – Reina
Introduction
In this episode of Child Life On Call, Katie Taylor talks with Reina, a devoted mother from Nashville, Tennessee. Reina shares her heartfelt journey of caring for her son Elliott, diagnosed with Burkitt lymphoma at eight years old. She discusses the emotional and practical challenges faced during Elliott’s treatment, the importance of advocating for her child’s needs, and the support systems that played a crucial role in their journey. Reina’s story highlights resilience, the power of community, and the significance of effective communication in pediatric healthcare.
Key Insights:
Early Diagnosis and Challenges:
Elliott’s diagnosis journey began with a seemingly minor issue, leading to the discovery of a large mass in his tonsil, which was diagnosed as Burkitt lymphoma.
Importance of Advocacy:
Reina emphasizes the critical role of parental advocacy, including meticulous record-keeping, clear communication with medical staff, and involving Elliott in his care decisions.
Support Systems:
The support from family, the school community, and the involvement of a Child Life Specialist were invaluable in navigating the complexities of treatment and providing emotional and practical help.
Emotional Coping:
Reina discusses the emotional toll of her son’s illness, the importance of mental health support, and the strategies used to help Elliott cope with the changes and challenges of his treatment.
Creating Resources:
Inspired by their experience, Reina has created children’s books to help other families navigate similar journeys, emphasizing the importance of involving children in their care and providing accessible resources.
Resources and Tips:
“When a Kid Like Me Fights Cancer” and other resources for helping children understand and cope with cancer.
Read “A Brave Kid’s Guide to Lymphoma” and”A Brave Kid’s Guide to Leukemia” to help your child cope with a lymphoma or leukima diagnosis.
To learn bout the mission of Hello Brave, founded by Reina, visit their website here.
Meet the host:
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children’s book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child’s medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
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