“You’ve got to pray, Emily,” I said. I understood her wanting to give up, but she couldn’t, not when we were so close to her getting well. “Pray for the strength to get through the night and to keep fighting. Trust your dad about this. You are going to beat it.”
I saw a little nod of her head: yes.
“Stay with me, Daddy,” she said softly.
“I will,” I said. “I’ll be right by your side.”
She faintly gripped my hand. I felt like our entire lives would end if this was the last time I would ever talk to her.
A swarm of nurses and doctors entered the room to sedate her. They put a breathing tube into Emily’s airway and attached the ventilator. They also inserted an arterial line to monitor her blood pressure and a femoral line, another central line for all her medications, one with three ports. With all the medications and fluids and the ventilator, she stabilized and even got better for a few hours, but then she got much worse.
As she’d predicted, Dr. Topjian was in Emily’s room most of the night. At one point she took her focus off the machines and turned it on us.
“Maybe you two need a break from this,” Dr. Topjian said. “Most parents do. They stay in the waiting room because it can get hard to be here.”
“I can’t go,” I said. “I promised Emily I’d never leave her.”
Dr. Topjian understood how seriously I took that promise.
That’s how it was that night. I sat next to Emily, holding her hand, wearing a surgical gown and mask, as the doctor ordered. Kari sat at the foot of Emily’s bed and Dr. Topjian moved among various machines, scanning the numbers and adjusting the levels of the medications and fluids they were giving Emily to keep her alive. Dr. Topjian’s focus was as deep as her compassion. I was amazed how she chose to live this life of brinksmanship, able to concentrate when a life hung in the balance. Although we’d known her for only a few hours, we were completely comfortable with her in charge. She treated us as part of a team, not to be talked down to, as if, even though she was the medical expert, this was a problem we would address together.
Again Dr. Topjian called us out into the hallway.
“Her lungs are filling with fluid,” Dr. Topjian said.
“Well, then should you give her less IV fluids?” I asked.
“When your body is really inflamed, as hers is, fluid leaks out of your blood vessels into your tissues,” Dr Topjian said. “Although her body, her tissues, are filled with fluid, it’s not in her blood vessels, which is why her kidneys are failing. Her lungs are getting worse. I’ve talked to Dr. Grupp and we agreed that to reduce the inflammation there, we have to consider administering steroids.”
“She’s been on steroids many times,” Kari said.
“We don’t have a lot of information on this, but we know that steroids can pose a risk to her CAR T cells,” Dr. Topjian said. “They can kill those cells, so there may be a tough decision up ahead.”
“We can’t give her anything that will kill the CAR T cells!” Kari said.
“That doesn’t sound like a good idea,” I agreed.
“It’s a risk you have to consider,” Dr. Topjian said. “If she can’t breathe, those cells won’t do her any good. The goal is to keep her alive so those cells can fight her cancer.”
Dr. Topjian excused herself. Kari and I stood in the hallway, unable to make this enormous decision.
“What do we do?” Kari said. “We give her steroids to save her life, which could kill the CAR T cells. Then she’ll suffer until the cancer takes her? Or do we not give her steroids and just keep going so that we can keep the CAR T cells?”
“I don’t know,” I said. “I just… I’m trying so hard to feel what’s best, to feel what’s right, but I’m not feeling anything.”
I tried calling Dr. Grupp, but he didn’t respond. Then I realized it was two in the morning.
I went to the hospital atrium and called Dr. Powell. He was at home in bed but he answered. I described Emily’s dismal vital signs. He recommended giving the steroids and mentioned that it takes steroids some time to work and that the odds of Emily surviving this were already not good. I returned to Emily’s room.
“I don’t know what we should do,” Kari said. “But if we don’t stop whatever it is that is happening, we might lose her.”
“I don’t know. I want to think about it.”
“I know that. But we don’t have much time.”
This was the cycle that we went through every few hours: Dr. Topjian would give Emily fluids and medications; her blood pressure would stabilize, and we’d relax a bit, thinking that she was doing okay. Then her oxygen and blood pressure would start to drop more.
The next morning, as her vital signs fluctuated in a lethal range, everything looked so grim. Her lungs were still filling with fluid, so we agreed to the steroids, but they didn’t seem to have much effect. She was getting sicker, and then Dr. Topjian had to go home. She’d been supervising Emily’s care for eighteen hours and it was time for her to get some rest. We were so sad to see her go. It wasn’t that we distrusted the next doctor—not at all. It was that we had grown to admire Dr. Topjian so much, to trust her so completely. She had kept Emily alive through that difficult night and we couldn’t picture being in Emily’s room without her calm and competent presence to keep us steady.
I thought of the little girl who came into Dr. Topjian’s care eighteen hours earlier, confused and sad, but awake, and with us in this fight. After Dr. Topjian left, the doctors decided to switch Emily to a more powerful ventilator called an oscillating ventilator, a
