—Cheri Lemaire
I’m praying so hard for Em’s strength but also for your (Tom n Kari) peace. I can only imagine the angels surrounding you two and holding you up. Your whole family is being loved and prayed for.
—Angelina Schilt
Keep fighting sweetie. The miracle is happening. You can beat this!!! Kari and Tom hang in there. God is with you and watching over you!!! Your sweet Emily is going to beat this!!!
—Vicki Maines
As I sit here with my 9-year-old girl, every cell in my body is in agony for you… my knees are sore from the time I have spent in prayer for your girl and for you. In the book of Hebrews, the whole of Chapter 11 is a written testament of what God has done through faith… keep the faith, keep fighting Emily and let us do the talking to God… we can do this.
—Joy Swatsworth
We truly believed that, without those prayers, Emily would not have survived that time in the PICU when everyone said she was about to die. The doctors could not explain why she was still alive. We kept telling the doctors it was because of all the support she had and all the people praying for her.
On Wednesday I took Becky and Ariana out to the hospital atrium to speak with them about going home. It was finals week and they were sacrificing a lot to be with Emily, especially Ariana, who had a perfect A average and was certainly risking that by staying with us at CHOP. Some of my family had started on their way home by then and I thought the girls should get back to their lives, too. My brothers were on their way back to Philipsburg. Kari’s pregnant sister, Lindsey, also needed to go home, and just in time—just forty-five minutes after she got back her water broke, and she and Pam ended up in another hospital, where she gave birth to a beautiful little girl. Robin and Sharon also headed back home.
Before we left the PICU for our chat in the atrium, Ariana took Robin aside and grabbed his hands to reassure him.
“Don’t worry,” she said again. “We’re going to see a miracle in that room.” Robin didn’t know what to make of that, but, as a man of strong faith, he wanted to believe, so he chose to do so.
“We can’t tell you how important it’s been to have you here with us,” I said to the girls from THON.
“We don’t want to go,” Becky said. “We need to be here for Emily.”
“And for you and Kari,” said Ariana.
“I’ll keep you in the loop,” I said. “You’ll always know what is happening with her. You can’t miss finals in your last semester.”
“We don’t care,” Ariana said.
“No, we don’t care,” said Becky. “There’s no place else we want to be.”
While we were talking, I got a message from Dr. Grupp, who wanted to talk to me and Kari. He’d been hard to contact in the last day. I would page him, and I know he is responsible about getting back to his patients and their families, but for some reason he didn’t get back to me. I didn’t spend too much time thinking about this, as I had plenty else to do, tending to Emily, holding on to Kari, and trying to keep my family out of despair. I was trying not to think the worst as I made my way to the PICU and the THON girls came with me to say their goodbyes, still unhappy that I was sending them away.
Dr. Grupp asked Kari and me to step out into the hallway for a chat. He looked tired and I knew he hadn’t slept in days while trying to figure out what was going wrong with Emily.
“We’ve found an anomaly in Emily’s blood work,” he said. “There’s a drug to treat that problem, and with your permission, we’d like to give it a try.”
“That’s the miracle,” said Ariana brightly. “It’s all right for us to go home.”
Chapter 16
DR. COWBOY
When I was trying to page Dr. Grupp that night while Emily’s life hung in the balance, I thought he was probably sleeping. That’s what any sensible person would be doing. Instead, Dr. Grupp was up all night trying to solve the mystery of what was going wrong with Emily. He told me later that he felt a profound sense of responsibility for her. In the first three patients, the older men, they had tried CAR–T cell therapy on, there were some confounding results that might have had something to do with their age. That was what made Emily an ideal candidate for this clinical trial: besides her cancer, all the other parts of her body were healthy, making her a perfect choice to succeed with this treatment. There was no doubt in Dr. Grupp’s mind that the things that were going wrong with her were caused by the CAR T cells.
“I had put those cells into her with my own hands, so I felt a profound sense of personal responsibility about what was happening,” he said. When he left the hospital to go home that night, he called his wife from his car as he pulled out of the parking garage because he was so fearful for Emily. “I feel like I might have killed that little girl,” he’d said.
Late that night, when Emily was stalled at the edge of death, when all the doctors and nurses believed she would not make it through until morning, Dr. Grupp was monitoring her from home on his computer and emailing back and forth with Dr. June, Dr. Bruce Levine, who had modified Emily’s T cells, and Dr. David Porter, who supervised the CAR T treatment in the first three adult patients, as well as with Dr. Berg at the
