SIMON'S PLACE | Lessons Learned

LESSONS LEARNED: SHARING OUR HARD-EARNED KNOWLEDGE

Palliative Care

The Art and Medicine of Caring: Strategies and Skills in Pediatric Palliative Care
On April 30, 2005 Mary and Markus were among six families that spoke on a parent panel at a conference on pediatric palliative care at Primary Children's Medical Center in Salt Lake City. Each family had a unique story to tell, ranging from shaken baby syndrome to genetic disorders to muscular distrophy to cancer. The caregiver audience of doctors, nurses, home health providers, and social workers listened attentively to our painful stories.

Presentation:
Simon Craig Vodosek (1997-2004): A Family Faces Neuroblastoma
(The presentation opens in a new browser window. Try the lower right button on the presentation screen to get the "full screen" view.)

We had been asked to focus on the things that helped us deal with Simon's illness as well as the things that didn't help. As background, we made a huge brainstorm list, addressing the different phases of Simon's life with cancer (diagnosis, treatment, end-of-life). For the actual presentation, we found several salient themes to focus on. For practitioners who want to look at the longer list, we are providing it here as a .pdf file.

Working Paper:
What Helped? What Didn't? Caring for Simon Vodosek through Cancer
(56 KB .pdf file)