The CHOP public relations department wanted to film the moment when Emily got her CAR T cells. They asked us if we’d be willing to be interviewed on that day, and if Emily might participate, too. We needed to talk this over as a family, and I was all for it. Six weeks before, the doctors were telling us to set up hospice so we could say goodbye to our little girl, but here we were. We were not just in a holding pattern anymore, not just surviving. I wanted the whole world to witness this moment of hope. Kari hesitated, though.
“We’ve spent six weeks keeping her infection free and now they want to bring in a bunch of people and cameras?” Kari asked. “I don’t think that’s a very good idea.”
“Emily’s going to change the world,” I said. “I think it’s great that the hospital wants to record this moment for history.”
“I don’t know, Tom,” Kari said. “This is all so delicate. Things can still go wrong. Why should we introduce anything that might put Emily at risk?”
“What if I work with the hospital to make it as safe as possible for her?” I said. “If they can protect her, would that make it okay?”
“Maybe,” Kari said.
CHOP did work with us to make Emily safe. On Tuesday, April 17, they set up a separate hospital room for us to do the interview and made sure it, and the crew and their equipment, was carefully sanitized before filming began. The cameras were all set up when we walked in. Emily sat down on the bed with her head angled into her chest, uninterested in this spectacle. She didn’t want to perform in front of a bunch of strangers with cameras. When the interviewer asked her what was going to happen to her that day, she looked up at him and then looked away without saying a word.
“They are going to take away your cancer, right Emily?” I said, prompting her to respond. I think she just wanted to get on with it.
“They’re going to take my cancer away,” she said softly, without much conviction.
When the interview was over, Dr. Grupp himself attached the syringe full of CAR T cells to her port. But just before he started the infusion, Emily called a halt to it. The preservative for the cells had a horrible stinky odor of creamed corn and Emily didn’t want the infusion to go any further until she had a popsicle to cover up that taste. Dr. Grupp obliged, and then we watched as he pushed in the syringe full of an army of cells ready to attack Emily’s cancer. We had so much hope riding on these cells.
After the cells were in and Dr. Grupp left, I pulled a chair up to Emily’s head so I could touch her as I talked to her. I felt the hopes of all the people online who had been praying that day. Just to look at the comments on the blog was to hear a mighty chorus of praise, of well wishes and incantations of joy. I wanted to transmit that feeling I felt from the world directly into my girl’s exhaustion and confusion. How would Nurse Karli describe this? I couldn’t draw pictures like she did.
“When they took all that blood from you, they did it because they’re building an army,” I said. “They’re training the army to fight your cancer, Emily’s army, and it’s going to be awesome how powerful that army is.”
She was sleepy, but her eyes were open and she was listening intently.
“They took some of your cells, the ones that fight infections, and made them super strong and focused on one job and one job only: to fight your cancer,” I explained. “And you’re going to fight, too. This medicine the doctors made is just for you. You’re going to have to stay strong while it works fighting your cancer. How hard are you going to fight?”
“I’ll fight as hard as I can, Daddy,” she said.
I think they kind of overdid it on the premedications for that first injection. She was on antinausea medications, Benadryl, and morphine, which made her loopy. After the infusion she kept asking us when she was going to get her T cells. Emily had tolerated the first injection of 10 percent of the cells so well they told us that we didn’t have to stay in the hospital overnight. She was exhausted from the procedure, though. She fell asleep in the car on the way to Kari’s sister Kristen’s, who lives thirty minutes away in Delaware, and she didn’t wake up until the next morning, sleeping seventeen hours in all. This gave Kari time to describe Emily’s T cell therapy infusion on the blog, and our support network checked the blog several times a day to reassure themselves and to leave us comments.
The first thing I do when I wake up in the morning is check to make sure that Emily made it through the night. Then I have my coffee and say my prayers for Emily.
—Nikki Lash.
I can’t stop thinking about her. My heart goes out to Em and her family. My daughter Hailey is 13 and she has been following Emily’s page with me. She is doing a video for her and also asked at youth group this evening if they could all say a prayer for Emily and they did. Praying every time I think of her, which is pretty much 24/7. God bless you all.
—Andrea Jean Hill
Although Kari and I were involved in the day-to-day care of Emily, we had not lost sight of the fact that she could be making medical history, and people who had loved ones who suffered through cancer brought those emotions to Emily’s story. There was a lot riding on the shoulders of one little girl.
Emily received 30 percent of the cells on
