restricted access   Volume 4, Number 1, Spring 2014

Table of Contents

Editors' Note

Editors’ Note

p. v

Narrative Symposium


Confronting Pediatric Brain Tumors: Parent Stories

pp. 1-3

Personal Narratives

A Bittersweet Score: A Father’s Account of His Family’s 20-Year Journey After a Pediatric Brain Tumor Diagnosis

pp. 3-6

From Normal to Nightmare

pp. 6-9

Second Guessing

pp. 9-11

Things Are NOT Okay

pp. 11-13

Advocates, Not Problem Parents

pp. 13-16

What Now?

pp. 16-18

Down the Medical Rabbit Hole

pp. 18-21

The Road to Understanding and Acceptance of the Late Effects of Pediatric Brain Tumors and Treatment

pp. 21-23

Family, Friends, and Cancer: The Overwhelming Effects of Brain Cancer on a Child’s Life

pp. 23-25

Over the Years

pp. 25-27

Prepping for the Day You Hope Never Arrives: Facing Recurrence

pp. 27-30

Not the End We Planned For

pp. 30-31

Ice Cream for Breakfast

pp. 31-33

Personal Narratives (Web Only Content)

Ethan’s Gift

pp. E1-E2

How I Hate You, Cancer

pp. E12-E14

Life in Limbo

pp. E2-E4

My Lost Survivor

pp. E4-E6

An Encounter with the Art and Science of Medicine

pp. E7-E9

Roadmap Needed: How to Help Parents Navigate the Worst Day of Their Lives

pp. E9-E12


Cartography of Endurance

pp. 34-38

The Right Thing

pp. 39-42

“Grey Matters”

pp. 43-46

Reflecting on Parental Concerns in the Treatment of Pediatric Brain Tumors: Observations From A General Pediatrician

pp. 47-52

Research Article

Who Are You Going to Call? Primary Care Patients’ Disclosure Decisions Regarding Direct–to–Consumer Genetic Testing

pp. 53-68

Case Studies

I Don’t Know Why I Called You

pp. 69-74

Responding to the Refusal of Care in the Emergency Department

pp. 75-80