He was speaking when he saw my name on his cell phone. And he interrupted what he was saying.
“Hey! It’s Tom calling!” he said, and he remembers the murmur that went up from the crowd. I started describing what was happening in Emily’s room at that moment, and he repeated everything I said into his ear right into the microphone.
“Emily’s fever is down,” he said. “They’re trying to take her off these blood pressure medications really fast because her blood pressure is back to normal.… And Tom says the last X-ray shows that her lungs are starting to clear up.”
Someone from deep in the crowd yelled out, “WE BELIEVE!”
And the call came up from all over Cold Stream Park to answer that back. People from all over shouting, “WE BELIEVE!”
That evening, when Becky and Ariana organized that huge sing-along and all those people gathered at Cold Stream Park to pray together for Emily, had not been an easy time between me and Kari. I was buoyed up by Emily’s amazing improvement and by all the positive energy that I had sensed coming from hundreds of miles away. We may have seemed like fools when we were rushing from one thing to the next in search of something to save Emily, but whatever we’d done, it was working. I had gone on the blog to tell the world that Emily was pretty much cancer free. Kari deleted the post, and we got into a huge argument.
“You cannot be out there declaring ‘She’s cured!’” Kari said. “All Dr. Grupp said was that he was ‘cautiously optimistic.’ He didn’t say she was better.”
“Let’s focus on the good stuff, Kari,” I shot back. “Something’s working. We just don’t know what it is yet. Her white cells are up, way up. That’s the T cells working.”
“You’re always Mr. Positivity, and sometimes it makes me crazy,” she told me. “I just cannot get my hopes up. Usually when her white count is up that means the cancer is growing again. I need to see her labs to know what’s going on.”
It was good that just then Dr. Grupp came into the room to settle our argument. In some ways, it was still the science-versus-faith contest that had been going on between us since Emily got sick.
“I’ve got some interesting news about Emily’s blood work,” he said.
“Interesting” news was usually not good news for us, I thought.
“The B cells are disappearing from Emily’s blood,” he said. “There is only one reason why this would be happening.”
“The CAR T cells are working! They are killing the cancer cells!” I exclaimed.
“It appears that the steroids didn’t harm them after all,” Dr. Grupp said. “In fact, she has more CAR T cells in her bloodstream than any of the men who were treated with this therapy had at this point.”
“They’re working!” I said.
“Don’t get too excited,” Dr. Grupp cautioned. “We see the T cells but we’re not sure what they are doing yet. We’re going to run more tests tomorrow.”
“I’m pretty excited, Dr. Grupp,” I said. “Emily’s still fighting.”
“This is a marathon, Tom,” Dr. Grupp said. “And I’d say Emily is about on mile four of this race. Her numbers are getting stronger and she’s not giving up, but there’s still a long way to go.”
Yesterday Emily was on mile 3 of her marathon for her critical care and today she’s on mile 4, so she’s making progress. She’s starting to wake up from sedation, so they have to give her “rescues” which means they give her an extra dose of sedation meds to make sure she’s still asleep. She’s had a couple of these episodes this morning, which is unnerving for us because we do not want her to be aware of what’s going on. She’s able to maintain good blood pressure on her own now. They also lowered the settings on her ventilator and will test for a certain type of pneumonia kids with low immune systems get. Her kidney function is moving toward normal again and her liver function is also better. This is good news, but we don’t know what the cancer in her bone marrow is doing.
—Kari
The moral of a story we were told this morning was that it is not the size or the stature of a person you judge them by but judge them by the shadow that they cast. We were told of a man who, because of that story, has started signing his email “IN EMILY’S SHADOW” before his name. WE BELIEVE!
—Tom (writing in Kari’s Journal)
April 28, 2012
For the next three days, Emily was better in some measures and worse in others. She’d breathe a bit better and they’d reduce the amount of pressure on the ventilator to encourage her to breathe more on her own. Then her oxygen levels would start to plummet, and they’d have to increase the pressure on the ventilator and increase the sedation so she could tolerate that. If she started to surface from unconsciousness, she would realize there was a breathing tube in her throat and that, along with the noise of the ventilator, and all the tubes and lines coming into her body, would make her blood pressure rise, so they’d give her even more sedation. By Sunday the swelling in her body had decreased dramatically. Emily started to look like Emily again, and Kari noticed that her eyelashes and her hair were starting to grow back.
Occasionally, she would open her eyes, and the moment she did we would be up on our feet trying to reassure her that everything was okay. Kari was ever at the ready with the stuffed Lucy dog we had nearby, as we knew that always cheered Emily.
“Everything is okay, Emily,” Kari said to her. “Just stay calm.”
“You don’t know how much support you have, Emily,” I said. “Becky and Ariana were here and
