“We’ve already made up our minds,” I said.
“Then you are doing this against doctors’ orders,” Dr. Freiberg said.
“I respect you, Dr. Freiberg,” I said. “I’m not telling you what we’re doing tomorrow. All I can tell you is we’re going to CHOP right now.”
It was like we had to fight our way out of the hospital and onto the turnpike to Philadelphia. Everywhere we looked we saw danger and doubt, and we couldn’t be sure we were doing the right thing. By the time we were halfway to Philadelphia, Emily was asleep, and Kari finally let herself cry.
“What do I know? I’m just a mom,” Kari said. “The doctors know what they are doing. They scared me so much when they started arguing in front of me. Maybe I’m just having a mom reaction. Maybe she does need the ICE chemo. Maybe we need to do what they say.”
I didn’t want to chime in about the whispers. I was watching her make up her mind, and what I needed to do was listen to her, not them.
“We need to educate ourselves so we can make the best decision for Emily,” she concluded, becoming more confident in our decision as we got closer to CHOP.
“That’s what we’re doing,” I agreed.
We met heavy traffic the entire way. When it slowed to a stop, I was berating myself, taking personal responsibility for the traffic. Emily had to go to the bathroom, so I pulled over to a big chain restaurant, a sit-down-dinner kind of place. I gathered Emily up, her body limp from the morphine. The hostess blanched when she saw us. Seeing Emily through a stranger’s eyes jolted me. Day by day it could seem reasonable enough. We were managing. We were doing what we were told and focused on the best outcome. Could I no longer see how sick Emily was because I was so focused on her survival?
Back in the car, back on the turnpike, I got chest pains looking at her sleeping in the backseat. I thought, Am I making the wrong decision for my child? Is she going to die because we’re changing hospitals?
We got admitted to CHOP, and we were just getting settled in Emily’s new room when a young doctor came in to offer us a Phase 1 clinical trial, just like Dr. Freiberg predicted.
“This is what we have open today,” he said. “It’s a chemotherapy she’s never had called temsirolimus.”
It was unfamiliar to Kari. She told the doctor we needed time to think. As soon as the doctor left, she opened her laptop to begin researching the drug. I took this chance to take another look at the bone marrow transplant hallway.
I had such a firm image of it from the distortions of my visions and dreams. In my visions I always saw it first as if I were looking into the hallway at the two figures moving there, me and Emily. And from this vantage point it was a place that glowed. After that, the view was a close-up of Emily, of me holding her with one arm around her torso, her on her walker with the tennis balls to smooth the way and the noisemakers on her heels that let out a big eep every time her heel hit the floor. Emily was pale, much paler than she had been when she was stomping around last year at home on her walker, but she was all Emily. All gumption and spirit and with that incredible will to live. And in the vision, I was not the broken and terrified father lurching through the world trying to decide the right thing to do. I was full of gratitude in a place without time. My daughter was weak, but healing, and it would take however long it took to get her healthy again. She knew I’d always be at her side.
With this vision in my mind, I turned the corner to the hallway, and it didn’t match my vision at all. Maybe one of the lights was out, but it seemed dim and depressing. The parents in the hallway looked exhausted. Try as I might to project me and Emily into that space, I couldn’t do it. I couldn’t see us there. I was even more confused than before. This vision I had been tending, running toward—was it just a hoax I’d dreamed up so I didn’t go mad? Was it a sign of my own madness: Kari and me running back and forth on the turnpike with our dying girl? I reminded myself that stress can cause doubt and that I had known we would end up there eventually, but I also had a sense that it wasn’t time yet and I didn’t feel that she was going to go to transplant here. But I was not quite ready to tell Kari about my whispers.
I walked back to the room, where Kari was on the laptop searching for scientific studies. She didn’t like what she was finding out about this drug temsirolimus.
“They’ve used it for adults who have lymphoma, but I couldn’t find a study where they used it on children.” she said. “The success rate in adults is not impressive. This doesn’t feel right, either.”
“It doesn’t feel right to be here right now to me, either,” I said. “I think we imagined that at CHOP they’d have the magic potion that would cure Emily.”
“I couldn’t live with myself if we enrolled her in that clinical trial and then it made her so sick that she couldn’t get the bone marrow transplant. That’s our only hope.”
She slammed the laptop shut and looked at me with such fear in her face.
“I’m just a mom and these are the best doctors in the world,” she said. “Dr. Rheingold told us this is the best thing we can do for Emily right now.”
I was just
