“I have seen patients get better, and I have been grateful when they get better,” Dr. Grupp said. “I have made decisions that have helped patients get better, but nothing like this. As I watched Emily’s numbers change last night, watched her heal in real time, I thought, oh my God. How is this possible?”
Where had I heard that question before? From the story of Chucky McGivern and his visit by the boy in the elevator.
Kari and I had watched the concerned actions by the nurses and the doctors as they cared for Emily that night. We were now pretty good at reading the machines, but we didn’t have the skills to understand the whole picture. We were not prepared for Dr. Grupp’s optimism.
The other good news from Dr. Grupp was that the CAR T cells appeared to be holding their own in the battle against the steroids. We had agonized for hours about whether to give Emily steroids to help her lungs because Dr. Topjian had told us about the research that showed steroids sometimes killed off T cells. Emily’s CAR T cells never paused in their fight. They just kept on multiplying. Amazing.
“You’re saying she’s better, Dr. Grupp?” I asked.
“She’s still critically ill, but she’s improving,” he said. “We have taken multiple steps back from the cliff, but the cliff is still there. What we need now is for nothing else unexpected to happen.”
The cliff was still there, and we were still on its edge. And while Kari and I were excited about the first real progress Emily had made in the week since she got that last infusion of CAR T cells, our support network outside Emily’s PICU room was still praying as hard as they could, not knowing that, along with the medicine, the prayers were starting to work. I wanted them to know not to give up that hope because she still needed it.
I asked Kari if I could write on the blog and she turned the computer over to me. I could see how exhausted she was and that she was not ready to describe what was going on with Emily, not just yet. After Dr. Grupp’s visit, I wanted to communicate with the thousands of people who—I could tell from the messages they left us—were getting up in the middle of the night to check on what was happening with Emily, whose first thoughts in the morning were to wonder if she had made it through the night.
Emily fought through the night and we are seeing some small steps forward. They were at the maximum settings on the ventilator to support her breathing yesterday. They suctioned her lungs and removed some mucus and overnight they turned down the oxygen from 100% to 46% and she held her own… her kidneys aren’t where they need to be, but they should improve. Em’s blood pressure and heart rate are OK today and the war continues. Kari and I are pulling strength from the fight in Emily because it is brutal for us to see her like this.
—Tom (writing in Kari’s journal)
April 26, 2012
I flashed back to that evening before, when Ariana agreed with me that, against the odds, a miracle would happen and Emily would pull through. I wasn’t so sure Becky was on the same page as Ariana and me. Becky was in agreement in one way, though: she believed in raising as many prayers and positive thoughts as she could, and Kari and I agreed with her about that.
“We’re going to go home and we’re going to raise some hell,” Becky had said as they told us goodbye.
“We’re going to rally so many prayers and so many thoughts,” Ariana said. “Let’s do this. We’ll get all the people who are on the Facebook page to come out and pray for Emily.”
They later told me that they didn’t talk much during the ride back to Penn State. They were so overwhelmed by the days they had spent crouched on the floor, sleeping in chairs, subsisting on Subway sandwiches and energy gum, up all night praying, that they didn’t have anything left to say. They had all been there for Emily, and for us, spending all their energy holding on to the hope that Emily would make it through the night, and she did.
After they dropped the other girls off, Becky and Ariana sat in the driveway holding each other and sobbing, letting it all go. Ariana can’t recall if they sat there for a few minutes or a few hours, but by the time they had finished sobbing, they were determined to come up with a way to support Emily from Penn State.
The hashtag #PrayingForEm they had made before they left for CHOP, the one where they had been posting live updates of their own, now had thousands of followers. It had started strong with the other members of their PRSSA club sharing the message with their families and their friends at Penn State, at THON, and beyond. While they were with us at the hospital, as the precariousness of Emily’s situation increased, the audience grew and grew. It leaped even further with my message of hope on the day they left, the day when Emily started to turn around, when I posted, “I believe I am witnessing a miracle.”
“I believe” was what I truly felt, even though Emily’s fight was far from over. The followers of the Prayers for Emily Whitehead Facebook page quickly transformed that into the #WeBelieve hashtag that, while the girls were making their way back to Penn State, had started to trend regionally on Twitter and Facebook. People started posting photos of themselves wearing Emily’s favorite color purple and holding up signs that said “#WeBelieve” and “#PrayingForEm.”
When they got back, Becky and Ariana remembered that great birthday party we’d had for Emily the summer before,
