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.
A good day is more nuanced than just measuring the impact of interventions (medical and other). Parents, we want to hear if or how your definition of a good day is changing. Your insights can help other parents see new ways that life is good. And always, we believe that what you have to share will benefit pediatric providers who want to help give your child and you as many good days as possible.
Liz Morris parents a four-year-old son with a life-limiting illness, serves as a family advisor at Seattle Children’s Hospital, and is a volunteer ambassador for the United Mitochondrial Disease Foundation.
Jori F. Bogetz, MD is an Acting Assistant Professor of Pediatrics at the University of Washington School of Medicine and an attending physician in pediatric palliative care at Seattle Children’s Hospital. She is particularly passionate about improving care for children with complex chronic conditions through interventions to support high quality communication and family-centered care.
Nick Purol is a clinical social worker for Pediatric Advanced Care Team (PACT), the palliative care team at Boston Children’s Hospital and Dana-Farber Cancer Institute, caring for children with oncologic, pulmonary, and cardiac conditions. He also serves as the PACT Social Work Fellowship Director as part of the Center for Palliative Care Through Harvard Medical School, and Co-Directs PACT educational Grand Rounds.
With a motto “never lose hope,” Chris and Irene are parents to 14 year old son Reilly who has a rare regressive gene mutation KCTD7. Chris works for a local power company and has been a volunteer firefighter and an EMT for 33 years. Irene is a regional ambulance CPR coordinator and Pampered Chef representative. Learn about their advocacy efforts on Facebook @Rally4Reilly