There was a tender feeling among us because of the pride we all had in Emily. When Emily had nearly died, we all felt it, and so did people around the world who were following the blog. This was a profound bond we shared with Dr. Grupp, the medical staff, our friends and family, and with many people we would never meet.
“You know, Tom and Kari, I don’t know how you made all those decisions for her treatment, but they ended up being the right ones,” Dr. Grupp said.
“Yeah, a lot of that time it wasn’t easy to decide,” I said.
“We tried our best,” Kari added. “I studied the scientific literature, but most of the time we questioned every decision we made.”
“All those times we went against the doctors’ recommendations,” I recalled. “Like when we turned down the chemo at Hershey and came here.”
“And then we turned down the clinical trial here and went right back to Hershey again,” Kari said.
“And all that time we spent waiting for the bone marrow donor,” I said, remembering the agony we felt during those weeks when we didn’t know what to do.
“The reason I ask how you made those decisions is this,” Dr. Grupp said. “If you had agreed to the ICE chemo at Hershey, or the temsirolimus at CHOP, Emily wouldn’t have been eligible for this clinical trial. She never would have gotten the CAR T cells.”
“Those were difficult decisions,” I said.
“You’ve given me a few gray hairs,” Dr. Grupp joked.
I reached over to hold Kari’s hand to acknowledge all we had gone through together and how, against all the odds, we ended up getting it right. One of many miracles in this room.
“Dr. Grupp, did you have faith that Emily would make it? Did you believe?” I asked.
“Optimism is not faith,” Dr. Grupp said. “You can hope for the best. From my perspective, if you start allowing that to drive your decisions, then you are not looking to the downside as a possibility. If you hope the patient gets better, that’s awesome. Hope is a very powerful tool. It is what keeps me going and keeps the families going as long as it is not unrealistic. But belief steps beyond what we know, and that is what you have to be careful of from a physician’s point of view. I view it as part of my job not to let belief substitute for judgment. I believe my role is to be ruthlessly objective. Given the fact that I am a human being and I care a lot for these patients and I desperately want them to get better, I have to be as objective as I can.”
“So you don’t think what happened to Emily was a miracle? How she survived that night was just good luck until science could save her?” I asked.
“Oh no, I’ll say miracle, but I might mean something different when I say it,” Dr. Grupp said. “When she pulled through that night, it seems miraculous to me. In the medical world we talk about error reduction and we describe how all holes in the Swiss cheese have to line up for an error to get through. This was the opposite. The Swiss cheese holes had to line up so that Emily could survive, and if you shifted any of those just a millimeter, it doesn’t happen. I’m fine with calling that a miracle.”
“We think it’s one,” I said.
“We do,” Kari affirmed.
“And we want to do whatever we can to help spread the word about this treatment so other parents know it’s available to save their children fighting cancer,” I said. “If you ever need a family to talk about this treatment or for us to share our experience, you should call us.”
“Thank you,” he said. “We’ll stay in touch. And now you get to take your little girl home, cancer free.”
As I loaded up the car, Kari checked our Facebook page, where she saw that it seemed the whole world was celebrating Emily coming home, especially our friends and family around Philipsburg. In the days when we were waiting to bring Emily home, people in Philipsburg kept posting that they were planning to line the streets to welcome us back. As we set off from Philadelphia, we didn’t think that would happen. There was a storm predicted to come through Philipsburg right when we were going to be pulling into town. This was not just a spring shower, either, but a real deluge. We didn’t expect anyone would come out during a thunderstorm.
We settled into the car, Emily in the back in her booster seat and Kari at my side. For the first time in months, our normal life was there to reach out and take back again.
As we pulled onto the turnpike, I remembered the crazy drives we took: all of the ambulance rides, the time I almost got a gun drawn on me by the police, all the times we were stuck in traffic with Emily sick in the backseat, me groggy because I hadn’t slept in days or doubled over in pain from my Crohn’s. All of that was behind us now, with Philadelphia getting farther and farther away in the rearview mirror.
I kept glancing back at Emily, awed by the strength and tenacity in my little girl. I remembered the boy in the elevator years before, when I was at Johns Hopkins, and how calm he was, and the same little boy that the monsignor described to us at CHOP. That was never Emily. She was feisty, full of life, no matter what the disease threw at her. From the moment I held Emily in my arms as
