As we walked the corridors of CHLA, we were greeted by a couple of nurses and technicians. Jeanette and I said hello and stepped into the elevator on our way to the cafeteria while Jordan underwent an MRI.
“It’s really sad that we recognize all these people,” I said.
She is right. We are back at CHLA and it’s all become too familiar. What’s different is the lack of instigating circumstances. No falls. No surgeries. No significant changes in Jordan’s pathology. But she’s out. There has been no progress in her condition. She’s still unconcscious, only occasionally opening her eyes. When she does so her eyes are fully dilated, feral and bereft. It’s as if she isn’t really there. She sleeps until a wild impulse overtakes her, so wild that the nurses have taped pillows to the sides of the bed. They keep a close watch on her. Last night she stood up in the middle of the night and tried to walk across the room. She wasn’t awake.
We are on a quest for answers. They are in short supply. Thus far the tests are inconclusive. The tumor appears stable. Her vitals normal. All we have now is a theory: Jordan may be having strokes.
Do you remember the scene from Jaws where Roy Scheider first realizes what’s going on when the shark attacks on Independence Day? Steven Spielberg used a cinematic technique pioneered by Hitchcock, called a reverse tracking shot. The camera dollies away very quickly while the camera operator zooms in with the lens. It creates an effect where the depth of field changes rapidly creating a feeling of isolated dizziness. That’s how we felt today when we first heard the word “stroke.”
Jeanette asked the obvious question. Is it common for a child to have a stroke? The doctor’s answer held little comfort: no, but it’s also not common for a child to have this much disease in the brain.
“This much disease in the brain.” We heard this phrase before, by another doctor. Those words strung together about your child are like someone punching you hard in the belly. You can’t breathe for a minute. You don’t know how to respond. You know it’s true. It’s not new information. But it stuns nonetheless, kind of like the words “malignant brain tumor” and “cancer.” Add “stroke” to the list.
And it makes sense: the partial paralysis on one side of the body, memory loss, agitation, drooping of the face, loss of consciousness. How could we not have considered this before? Maybe because she’s eight.
Jeanette and I don’t know how to feel. My mind has been racing since yesterday morning when I first learned Jordan had relapsed. I am restless and confused and uncertain about where to let my mind wander. Jeanette describes a similar emotional state. Cancer has a certain gravity that can be assuaged by countless success stories. Even though Jordan’s cancer is rare, we took comfort in its pace and lack of aggression. A stroke is a different matter, made ominous by the lack of treatment options.
That said, we don’t know for sure that Jordan is having strokes. It is a theory – a theory that sadly makes sense, but is unproven. In a couple of days the doctors will order another CT scan. They will compare the results to the scan from yesterday. Ordinarily, evidence of a stroke can be seen on the film after a couple of days. Until then, we wait. We sing to her. We rest a hand on her back and brush the hair from her face. We talk about other subjects and manage the things that can’t be ignored. And we wait.