Kari started to cry. I felt the anguish, too, but I didn’t believe the doctor so I didn’t cry. I was strengthened by my vision of the walk in the hallway.
“We’re not going home and we’re not going to hospice. We’re going to CHOP. I’m paging Dr. Rheingold.”
Dr. Rheingold called me back from her home. I could hear her children in the background.
“We need help,” I said. “Emily’s cancer is growing again, and the doctors say it’s time for hospice. Is the clinical trial using temsirolimus still open to Emily?”
“Unfortunately, that trial is no longer an option. The chemotherapy that Emily just got at Hershey disqualified her for that trial,” Dr. Rheingold said. “But this is amazing that you paged me today, because the FDA just gave us approval to try T cell therapy on pediatric patients. It was the last email that I read before I left work, and the approval came much sooner than expected. I think Emily will qualify for that trial.”
I grabbed Kari’s hand and squeezed it hard as I put Dr. Rheingold on speakerphone.
“You mean that the T cell therapy clinical trial has just opened for children and CHOP is ready to enroll patients?” I asked, grinning at Kari.
“Yes,” said Dr. Rheingold. “Emily could be the first.”
Kari was looking at me, eyes full of grateful disbelief.
“We’re coming,” I said. “You have her full care as soon as we get there.”
“See you soon,” Dr. Rheingold said.
For the first time in a long while, we had hope. Kari had, in her way, been following her whispers. Over the months since Dr. Rheingold had described how CHOP was preparing to run the T cell therapy clinical trial, Kari had not been able to get the idea out of her mind. She had spent hours searching for places where it had been tried, and trying to understand the science behind the treatment. She had read all about how T cells could be genetically modified to attack cancer. This singular focus was her form of the whispers. She had been drawn to this method repeatedly in her research. And me, I had my vision of Emily and me in the bone marrow transplant hallway at CHOP that I had tended to so carefully. It now seemed to be coming true.
As we walked out of the pediatric cancer unit at Hershey that last time, the corridor was lined with our beloved nurses and other medical staff who had been through so much with us in the last several months. I think we were leaving just as the shift was changing because there seemed to be more people in the hallway than we normally saw on the floor, and many of them were crying. Some of them were trying to hide it, but some of them weren’t. That was hard.
There was so much we wanted to say to them, so much gratitude we had for them. Also, I wanted to tell them not to cry. We had hope. Emily was going to beat this thing. Maybe if I had said that to them they would have told me no, they’d seen this movie before, and it didn’t end well. And I wanted to say to them that Emily was not like those other patients. I wanted to tell them that she was going to live and that it would be unlike anything that had ever been seen or done before. Emily had the whole world pulling for her, writing to her, and praying for her, I wanted to say, and she was going to survive.
Chapter 13
THE TROJAN HORSE AND THE CHIMERA
Although we knew T cell therapy was our last chance to save Emily, we didn’t feel a sense of doom. My hopes and prayers and Kari’s faith in science, as well as the prayers of thousands of people we’d never met, had converged to bring us this miracle. I had never given up hope that something would arrive to save Emily, while Kari’s form of faith was her focus on this T cell therapy. When we’d come to CHOP that second time, just a few weeks ago, Dr. Rheingold had told us they were ready for the T cell therapy clinical trial, but the approval was still months away, much too far off in the distance to be of any help to Emily.
Then suddenly, it had seemed when there was no other place to turn, it was ready.
As crazy as we had seemed, rushing from one hospital to the other, driven by visions and worries, shouting at an officer on the highway, praying, screaming, pacing, crying—there had been something driving Kari and me to the best solution. Whatever it was that brought us to CHOP on that March evening, we knew Emily still had a chance, and that was all that mattered.
The next morning, Dr. Stephan Grupp, the pediatric oncologist in charge of this clinical trial, and his research team came into Emily’s room. They explained the clinical trial and answered our questions. I liked Dr. Grupp instantly. He’s tall and affable, the kind of guy who looks at you directly. We instantly trusted his mix of spirit and seriousness. He felt solid and calm. I knew he would not sugarcoat the risks of enrolling Emily in this trial. His having his team with him to answer any and all questions impressed me.
“I’m not here to sell you on this treatment,” he said. “If anything I say makes you uncomfortable, question me. Think hard about whether you want Emily involved in this clinical trial. It offers no guarantees.”
Dr. Grupp, head of the hospital’s immunotherapy research and transplant program, described himself modestly as the general contractor for T cell therapy. He was a brilliant scientist, an expert in stem cell transplants, leading the big team of lab technicians, researchers, nurses, and doctors dedicated to
