Narrative Inquiry in Bioethics

Migraine. That’s what we thought. They run in my family, so why not? My beautiful, bright, extroverted ten–year–old daughter’s neurological exam was unremarkable, but she had a bad headache and was vomiting in the early morning hours. Migraine didn’t seem that much of a stretch. Our savvy pediatrician had a gut feeling that it was more than a migraine and sent her for an MRI.

We had not even left the children’s hospital before I received a voicemail to call our pediatrician. When I returned the call, on our way to pick up Ellie’s younger brother from school and already running late I heard the words that no parent wants to hear, “I have bad news. We found a brain tumor and it’s rather large”. This conversation would turn our lives into a frenzy of fear and leave unanswered (unanswerable?) questions. I was told to bring her to the ER where we would be met by a neurosurgeon and oncologist. I could not process this information. My initial fears were too scary to utter. Was she going to die? Do children survive brain surgery “intact”? Is it operable? Oncologist = scary cancer, doesn’t it? Did we do something to cause it? What if our insurance doesn’t cover the best treatment?

Clinging to the life I knew before—needing to stay in the “before,” not even pulling the car over, I reached backwards, held Ellie’s leg and spoke the words out loud for the first time. That’s what a brain tumor diagnosis does to your family. It breaks up time into “before” and “after”. Her reaction was a terrified wail and then, oddly, hysterical laughter. Is that what shock looks like? My own reaction to the call was of stunned silence. The sound of my heartbeat and the blood rushing in my ears meant I could not ask the questions I had in that moment.

Ellie has always been exceptional. She is a bright light in any room. At only ten–years–old, she spoke like a teenager; had the vocabulary of an adult. Never again would I be able to take this for granted. In every waking moment that our lives were unoccupied with the practicalities of a brain tumor diagnosis, the questions I couldn’t think of or say out loud during that terrible phone call continually flooded my thoughts. Your child’s brain is everything after all; it’s what makes them “them.”

An avid horse rider, she had been off her favorite horse’s back for a few weeks saying that the bouncing hurt her neck. I had kept her off school for several days, but we had seen marked improvement in [End Page E12] the day or two leading up to that devastating D–Day of diagnosis, and she had been back at school doing well. Only a week before, Ellie had been dancing at a party with friends. How could she have a brain tumor?

We rushed home and hurriedly packed our bags for “at least a week”—and I recall that life seemed to be both in slow motion and traveling at the speed of light. I desperately wanted to turn the clock back to the innocence we had known a few hours before. This was way too much news to hear in one day. Even when I heard the diagnosis, I was surprised that we would have to go to the hospital that day. Now! Don’t people get time to process or plan and get second opinions? We had no time to tell family and friends or ask for help. We didn’t have the luxury of time. Time is another thing I no longer take for granted.

Upon arrival at the large children’s hospital we felt as if we were given so much information, but looking back, I now know that these angels are trained in giving parents only what they can handle—in tiny pieces, nibble by nibble. You don’t (can’t) hear half of it anyway. Our families live far from us, and trying to gather and figure out...