Chapter 19

HOMECOMING

As we prepared to bring Emily home, people all over the hospital were calling it a miracle. So many of the nurses and staff had been there next to us when no one thought Emily would make it through the night, and they were there to celebrate with us when she did. It was more than that, though. This was bigger than just the survival of one little girl. If Emily hadn’t survived, research into this way of killing cancer would have stopped. It might not have been funded again for many years. She had carried so much hope, and so many people’s lives, on her little shoulders, and she almost didn’t make it.

As we were piling all the cards and books onto a cart we borrowed from the hospital, Dr. Grupp came into the room to say goodbye, and to thank us. We were the ones who wanted to thank him, so the feeling in the room was all joyful. This crazy idea of using the body’s immune system to treat cancer had worked, and it opened up so many possibilities for future treatment. Dr. Grupp told us that the director of the National Institutes of Health (NIH) heard about Emily’s recovery and all he could say was “Wow!” Emily’s victory meant that there would be more research to improve this treatment and other scientists finding ways to apply this personalized method in other types of cancers.

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 a baby, I heard a whisper that she was going to do something great. Here she was only seven, and she had already done something that had changed the world. She had changed the way we treat cancer.

We were still a family, and we were stronger because of all that we had been through together. I had always loved Kari, but now I knew her deeply and, also, she understood me. Our marriage was stronger and even that felt like a miracle. Our love and respect for each other deepened.

And I had a stronger sense of faith, too. Maybe it wasn’t the same as anyone else’s, but it was all mine and it was very strong. I could say to anyone that I had proof that miracles happened and that my whispers were real. To everyone who doubted my whispers, I could explain with confidence that, if you don’t lose hope, things you can only dream about can come true. I had always felt my faith most strongly when I was in nature, but now I knew how to recognize it in unexpected places as well. I saw the brotherly faith in the lodge in our hunting camp. All of us bunked in an open room above a big, dark porch, talking late into the night and sharing the family folklore. I recognized it, too, when Jim and I flew loose-limbed over the hills on our dirt bikes, jumping high in the air, unconcerned about a fall. I know faith in my marriage. And I felt it coming from all the people I’d never meet who prayed and hoped for Emily. Although we didn’t know them, we always felt the steady stream of love and support coming from Emily’s supporters all over the world. Together we made this miracle.

My cousin Jodie kept texting me as we drove, asking where we were on the journey back home. She wanted to know the exact time we departed CHOP. Every stop we made along the way—when we needed a bathroom break or when I stopped for gas—I felt I needed to check in with Jodie, although I wasn’t completely sure why she was so concerned.

About forty-five minutes from Philipsburg, we hit that torrential downpour that the weather service had warned about, rain so dense it was hard to drive, and pulled over at a convenience store to get a drink and, of course, to update Jodie on our progress. I voice-texted her when we got off the freeway and made the turn home, and Kari texted her mom, who was waiting for us at our house along with many other family members and friends.

Jodie texted, telling me to stop at the bowling alley because she had a surprise waiting there for Emily. There were two state trooper cars and three fire trucks in the parking lot. We’d been amazed by the support from the firefighters, who did a boot drive for Emily. They’d stood at intersections holding out their big rubber boots, asking people to toss in money for Emily. That one day they raised $4,500! The state troopers said they were there to guide us home and make sure we were not stopped by traffic as we drove through town. Suddenly, our one-family car was part of a parade of fire trucks and police cars.

“You know people want to see Emily,” Kari said. “You might want to put her in the front seat so that if there is anyone on the street when we drive through, they can wave to her.

“It’s pouring out here.” I said. “I don’t think there’ll be anybody on the street.”

“I think you should do it anyway.”

Kari was right. Emily should be in front for her homecoming, even if there were just a few people hardy enough to stand on the streets to welcome her. It took us a minute to switch everything around so Emily’s booster seat was on the passenger side, but Emily was not impatient. She was enjoying the prospect of a parade to welcome her home. The only thing she really wanted, she told me, was to see Lucy.

The fire truck at the front of our little parade hit the siren as we started down the long road to the center of town. Emily stared out the window excited by how the town had turned out to welcome her.

“Daddy, look!” she said. “All the trees are covered in purple ribbons!”

Kari had her phone up, snapping pictures as we drove. Clusters of families, dozens of them, huddled under umbrellas and all wearing purple T-shirts they’d bought at fund-raisers. Hundreds of people stood at the roadside in the rain holding up purple “WE BELIEVE” signs.

At the center of town, there were many more, people hanging off the sides of trucks or standing up in the backs of pickups, faces of schoolkids poked out the windows of family cars and vans with voices yelling: “Welcome home, Emily!” “We love you, Emily!” “We believe!” Later we found out that they had let school out early so that all the kids who had contributed so much love and support, and so much birthday money, could see Emily return. Almost every car we saw had a purple “WE BELIEVE” sticker in the rear window.

Through the tears in my eyes, I looked back at Kari and saw the tears in hers. It dawned on me that Emily was not just our little girl; she was everyone’s.

We had another stop to make before we got home. Jodie told us to pull over at my grandmother’s house, which is right on the route. There we saw a photographer from our local paper, The Centre Daily Times, my grandma, mom, and Big Jim holding Lucy. I looked at Emily, so pale and with dark circles under her eyes and the feeding tube still inserted into her nose. It looked as though she was too weak to hold up her hand. Then she saw Lucy and the sparkle returned. I rolled down her window and Lucy leapt out of Big Jim’s arms and right into Emily’s lap.

“Emily, don’t let Lucy lick your face!” Kari said, ever watchful of germs, but there was no interrupting this moment. Emily was suddenly filled with energy, most of it provided by Lucy.

As we continued home, there were people lining the streets along the country road that leads up to our house, at the turn up the hill leading to our street, and down the block, all the way until we pulled into our driveway, where the local news station reporters and their cameras stood there to greet us.

As we helped Emily out of the car, Lucy was running back and forth, her tail wagging. Emily picked up Lucy and gave her another kiss. There would be no interviews that day, at least not for Emily. Inside, the whole family was waiting to welcome her.

At last Emily had come home.