IN THE ROOM: What does a good day look like?

A recorded ZOOM meeting with parents Liz Morris and Chris and Irene Jakubiak and palliative care providers Jori Bogetz, MD and Nick Purol, MSC. Conversation includes relationship between care plans and good days, communication with medical team, impact of days on perception of being a good parent, baseline, and how palliative care can help.

We think it’s safe to say that all parents want their children to have as many good days as possible. So, what does a good day look like when the child is living with a serious, life-threatening condition? Do the days feel more precious? What are parents’ expectations of themselves? How do the contours of a ‘a good day’ change over time?

CPN invites you — parents and providers — into the Zoom Room to learn and listen as we consider all the ways a day can be good for children living with serious illness. It might mean a day without seizures or a trip to the doctor’s office. It might mean engineering a trip to a beach or a family pajama day to watch a movie. It might be as simple as a day when the child smiles or laughs.