**Disclaimer: The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. Any listed resources are not intended to be endorsements.**

In this podcast, Peggy converses with Leila Zengel, who shares her family's journey and challenges following her 10 year-old daughter Julie's bone marrow transplant. Julie, diagnosed with (refractory) Ph-like ALL in January 2018, underwent a transplant in June 2018 at the Children's Hospital of Philadelphia (CHOP) with her brother Jacob as her donor. Leila, a former school counselor and educator, delves into the complexities of transitioning to a full-time caregiver role for her daughter.

The conversation begins with Julie's diagnosis and the subsequent need for a transplant, highlighting the difficulties in finding effective treatment. Leila describes her shift from a professional career to focusing entirely on Julie's care, emphasizing the drastic change in their family life. The process was challenging, as Julie did not respond well to initial treatments, leading to the critical decision for a transplant.

Leila shares the emotional and logistical challenges faced during the post-transplant phase, particularly the adjustments required when returning home. Living two hours away from the hospital posed additional difficulties. She speaks about the nuances of balancing care for Julie while managing the rest of the family, including her son Jacob. Leila's story is a deep dive into the realities of caregiving, from handling the medical complexities to the emotional toll on the family.

Leila talks about the importance of self-care for caregivers. Leila stresses the need for moments of rest and relaxation amidst the demanding role of caring for a child with a serious medical condition. She talks about the value of simple activities like puzzles and reading, which provided her with much-needed respite.

Leila also discusses the unexpected medical challenges that emerged post-transplant, such as chronic graft-versus-host disease. Despite these hurdles, Julie's gradual recovery is a testament to the resilience of both the child and the family. Leila highlights Julie's return to normal activities, including participating in the school band, as milestones in her recovery.

Family dynamics and adapting to a new normal at home are central themes. Leila explains how they navigated through changes, setting boundaries to protect Julie's health and creating new family traditions. She emphasizes the importance of living in the present and finding joy in small moments, reflecting on the perspective gained through this challenging journey.

Lastly, the role of support systems, particularly the medical team and communities like Momcology, is discussed. Leila underscores the value of these networks in providing support and understanding to families undergoing similar experiences. The podcast ends with Leila offering insights and advice for other caregivers, highlighting the importance of community, self-care, and focusing on the present.

Momcology Website: https://momcology.org/

Other Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to our sponsors. This season is supported by a healthcare contribution from Sanofi https://www.sanofi.com/