“Let’s call Dr. Powell,” I said. “We trust him. He’s never steered us in the wrong direction. He’s not tied to Hershey or to CHOP, so he’ll tell us exactly what he thinks.”
Dr. Powell didn’t pick up, so I laid out the circumstances in a phone message, ending with “Give us your thoughts. It helps us decide.”
We sat for a minute in silence. Then Emily spoke.
“I want to go back to Hershey,” she said.
“You do? Why?” I asked.
“I like it there better,” she said.
“That’s three votes out of three,” I said. “Kari, go tell the nurses we’re going back to Hershey. I’ll start packing.”
Then Dr. Rheingold came in. She’d heard we were going back to Hershey.
“I really feel the temsirolimus clinical trial offers the best chance to get Emily back into remission,” Dr. Rheingold said.
“It just doesn’t feel right,” I said.
“I wish we had more to offer you here right now,” Dr. Rheingold said. “We have some immunotherapy clinical trials for leukemia coming up, one called T cell therapy, that trains your immune cells to fight your cancer.”
“I’m very interested in that,” said Kari. “I’ve read a lot about immunotherapy, and it sounds promising.”
“I agree,” Dr. Rheingold said. “We’re ready to start the T cell therapy clinical trial, but we are waiting for approval from the FDA to begin, and it looks like that will be months from now. Emily needs something sooner than that.”
“Thanks, Dr. Rheingold,” I said. We left CHOP, our hearts heavy, wondering if we had made the right decision.
Once you hit the turnpike on the way to Hershey, you’re about an hour away, and I was starting to feel that we had made the right decision. I thought both of them were asleep, but Kari was just faking it until she knew Emily was asleep.
“We’re going back because we’re comfortable, but really, we’re going back there to watch Emily die,” Kari whispered.
“No, we’re not!” I said. “Not true! Emily’s going to make it! I know it.”
“You heard what the doctor said,” Kari said. She was crying. “Chemo isn’t doing anything for Emily and we’re going back to Hershey for more chemo.”
Kari seemed unnerved that I was not crying, too.
“How are you so calm?” she asked.
“Kari, I had a vision,” I said. “I heard a whisper. I’ve seen it many times, and it’s getting stronger each time. I see me walking with Emily. She’s weak but she’s beaten cancer, and I’m with her at the bone marrow transplant hallway at CHOP, teaching her how to walk again.”
“What? Why didn’t you tell me this before?” Kari was furious. “Turn the car around right now! We never should have left. We have to go back!”
“Today, we’re going back to Hershey,” I said. “We don’t even have the energy to turn around. This is what we’re doing today because that’s what Emily wants, and her opinion needs to be heard. It feels to me like the right thing to do now, and we’re almost there.”
We got off the turnpike exit for Hershey just as Dr. Powell called. He was firm in his advice, telling us we need to get Emily into the temsirolimus clinical trial at CHOP right away.
“We already turned that down,” I said. “It didn’t feel right to us and we couldn’t get hold of you.”
“You have to do something right now,” Dr. Powell urged.
“Yeah. We know,” I said. “Something has to be started soon. We’re just arriving at Hershey.”
Chapter 12
PRAYER REQUESTS
Prayer requests:
—That Emily’s blast count goes to ZERO (and stays there forever)
—That Emily continues to feel great—no nausea/vomiting, no pain, no fevers, no infections
—Wisdom for Emily’s doctors so they continue to know what to do to cure Emily and the other children here at Hershey
—Strength for all three of us so that we can make it through the next few months
—Kari’s journal
February 14, 2012
I had so much pain in my stomach I could barely walk when we entered Hershey, and the reception we got from some of the staff there was chilly. We’d become close to a lot of the nurses and staff in the months we’d lived in that hospital. The staff cared about Emily, and when she wasn’t doing well, we felt the sadness and anxiety in the hallways, not just in our room. Upon our return from CHOP, Dr. Lucas didn’t want to see us anymore. We never spoke to him again. Our care was transferred to Dr. Moshe Bell, the attending physician who was on service that week.
Kari showed Dr. Bell the clinical trial protocol that Dr. Rheingold had suggested, and overnight Dr. Bell investigated that combination of chemotherapies. He thought this combination, minus the experimental temsirolimus, was a promising alternative. Emily had had three of the four drugs—vincristine, asparaginase, and methotrexate—before and had tolerated them well. He thought it would be a good combination to give Emily. More than that, Dr. Bell’s calming manner and the fact that he took the time to research the drugs made it feel right to us. We agreed to go ahead with the chemo.
Emily was happy to be back in Hershey and that made us feel good, too. The fact that one of the chemos, Mitoxantrone, was blue and turned her pee green delighted Emily. She called it the blueberry juice when the nurses would hang it on her IV pole. There were steroids in this chemo cocktail, too, so as they built up in her system, she got moody and very hungry again. However, she did not complain during these weeks. Through it all we admired what a trouper she was. Despite the way this whipsawed her around, she often said she’d do whatever they wanted her to do as long as they controlled her pain. I wondered
