“Your birthday is only a few days from now,” Kari said.
“Yes, and it’s going to be great!” I added.
We didn’t know if what we said was reaching her. The minute the nurses saw that we were talking to her and she seemed to be responding, they gave her stronger sedation and she was back in that dark silence again.
In the days before her birthday they switched the oscillating ventilator to one that was less powerful and less noisy because X-rays showed her lungs starting to clear up more. Emily looked and seemed more comfortable, but I was not. I had a flare-up of my Crohn’s disease that was so severe I had to be hospitalized, too. This was two kinds of agony for me, not just the physical pain but my sorrow that I was not there for Kari and Emily and my fear that I would not be there for her birthday. I was ecstatic when they discharged me the day before Emily’s birthday.
On Emily’s seventh birthday everyone in our family and all her fans throughout the country and the world were grateful that she was still alive to celebrate. She was doing great on the less-powerful ventilator. In fact, she was doing so well that they started to wean her off the paralytic medicine so that she would gradually wake up. Kari and I were afraid she was awake but too paralyzed by the medicines to be able to open her eyes. Several hours a day we would stand by her bed talking to let her hear that she was loved and that we were certain she would wake up soon, and we were even more adamant about this on her birthday.
“Emily,” I remember saying, “it’s your birthday and it’s a beautiful day outside.”
“It is, honey,” Kari said. “The sun is shining and it’s going to be summer soon. We know how much you love the summer.”
“Yes, summertime,” I said. “Uncle Greg started heating up the pool so it will be warm and ready for you when you get out of here. We’ll go swimming every day. All you have to do is wake up.”
Emily started to blink her eyes open.
“I’ll go tell the nurses!” Kari said. We’d promised the nursing staff that, if we saw her waking up, we’d let them know right away. There was a good chance Emily would panic when she woke up enough to feel the breathing tube and her instinct would be to pull it out. We couldn’t have that.
We told the nurses, who came rushing in to stand around her bed and sing “Happy Birthday” to her. While they were singing, Kari and I each took one of Emily’s hands. As we reached the end of the song, Emily squeezed our hands! I felt a sense of relief even with that one little flutter of her lashes. Just a week earlier she’d told me she didn’t have the strength to fight anymore, and here she was, responding. Shortly after our celebration, the nurses had to increase her sedation again, so she’d keep that breathing tube in, and she went back into dreamland. The biggest birthday gift the doctors gave us was saying it was possible that she could be off all ventilator support within the next two or three days.
Over the next few days, they stopped the antibiotics and slowly decreased the other medications. We counted down as the nurses removed each of those seventeen IV pumps one by one. Kari and I would talk to her, reading her stories and reminding her of things from home, trying to get her to breathe some on her own.
“Lammy is here, waiting for you to wake up so you can cuddle. Did you know that? She’s right here and I’m holding her. And Lucy is waiting for you at home, so you have to get better and see her. Everyone loves you so much, Emily. There are people all over the world praying for you, and the doctors here are taking such amazing care of you. I know you’re going to pull through this,” I’d say, or it would be Kari’s turn and she’d say something similar.
Soon Emily was awake enough to shake her head yes and no when we asked her questions and she could point to letters to spell out things she felt, like telling us, “I miss Lucy.”
We were anxious even though Emily was doing better. She was scheduled for a bone marrow aspiration later that week that would show if she had any cancer cells left in her blood or if the CAR T cells had killed the cancer cells as they were designed to do.
Kari didn’t want to get her hopes up because there had been so many times when she had, only to have them dashed by bad news. I reminded her that this time was different. We had thousands of people praying for Emily and supporting her. We had spent the last week sorting through the hundreds of cards from strangers whose lives had been touched by Emily’s fight to live. I thought there had to be a reason the steroids never killed her T cells when the doctors had been so certain that they would. I felt there had to be a reason why she’d made it through the night when the doctors were sure that she would not. There was no medical explanation, so it had to be something bigger. I was willing to hope—but then, that’s my job!
Chapter 18
WITNESSING A MIRACLE
On May 5, the doctors and nurses were holding back tears as they removed the breathing tube from Emily and turned off the ventilator. They had thought they would take the tube out only after she died. None of them anticipated that she would be so well two weeks from the moment when she hovered on
