Caregivers SHARE, a St. Jude Podcast

How does it feel to first receive a child’s diagnosis of a serious illness? Paula shares her initial feelings of having the rug pulled out from under her. Jason reflects on feeling out of control and exhausted. In the fog of a new diagnosis, how do you keep a clear head to make key health decisions for your child? Jason and Paula discuss the small losses and changes along the way. They also discuss the moment of realization that nothing will ever be the same. As Jason reflects, “the dreams [you had for your child] aren’t gone. They do change.” A special thank you to our moderator, Erica Sirrine, Social Work Director at St. Jude, and our parent caregivers, Paula Elsener and Jason Winkle. 

How does a caregiver handle day-to-day logistics at home when their child has a serious illness? Paula and Jason share how they were able to ask for much-needed help from friends and loved ones, even with mundane tasks like yard work and oil changes. They discovered that sometimes coping means focusing on a calendar or a to-do list. They also learned that it’s OK to realize you can’t do it all on your own. Listeners learn tips for keeping logistics organized and which items to pack for long hospital stays. A special thank you to our moderator, Erica Sirrine, Social Work Director at St. Jude, and our parent caregivers, Paula Elsener and Jason Winkle.

Paula and Jason explore ways to find support during treatment, whether from the medical team, social workers, or others. They share the importance of advocating for yourself and your child and how important it is to speak up when you know something is not right. Jason and Paula explain how they responded to unsolicited medical advice during treatment, and when to ask for help from someone outside the care team. They point to self-care, connecting with patient families, and living in the moment as tools for making it through. A special thank you to our moderator, Erica Sirrine, Social Work Director at St. Jude, and our parent caregivers, Paula Elsener and Jason Winkle.

When it’s time to transition off therapy, what happens next? While it might seem like an exciting time, the transition off therapy can come with anxiety and fear. Parents LaChaka and Darick share how they handled the emotional aspect of leaving the safety net of the hospital. They talk about the time required to process the experience and how they’ve been humbled by it. LaChaka and Darick reflect on hard emotions like survivor’s guilt. They also explain how creating a support net with other families helped them get through. A special thank you to Emily Browne, Transition Oncology Program Director at St. Jude, and our parent caregivers LaChaka Davis and Darick Hemphill.

The transition from a hospital care team to a local care team comes with its challenges. LaChaka and Darick map out the medical journey each of them took with their children’s treatment. LaChaka outlines how she kept her home pediatrician in the loop so that the transition went smoothly. Both caregivers offer tips on organizing medical records and teaching a child to take an active role in their own care. A special thank you to Emily Browne, Transition Oncology Program Director at St. Jude, and our parent caregivers LaChaka Davis and Darick Hemphill.