“Tom, we need to prepare ourselves for the fact that Emily might die,” Kari said. “I don’t have the kind of faith you have.”
“She’s going to make it,” I said.
“I believe in God, but I look at the science part of this,” Kari said. “All the signs point to her not making it much longer, and we need to prepare for that.”
“When the doctors saw me talking to Emily, one of them told me that she had so much anesthesia in her that she had no idea what I was saying,” I said. “But then she would nod her head and acknowledge my questions. I know Emily is still there. She’s still fighting. We can’t give up hope.”
“I’m not hopeless, Tom,” Kari said. “But we have to be realistic.”
When Dr. Robert Berg took over from Dr. Topjian, he motioned us into the hallway to talk.
“I’m looking at Emily’s numbers, and by every measurement she’s steadily declining,” he said. “I would say she has only a one-in-one-thousand chance of making it through the night. It’s time to call your families to prepare them. It’s time for them to come to say goodbye to Emily.”
Chapter 15
WE BELIEVE
Em was in too much respiratory distress and low BP. They had to intubate her. She is on a ventilator and sedated so she is not aware of what is going on. Had to administer steroids to stabilize her and save her life, but steroids kill T cells. They will check her bone marrow today to see if T cells had a chance to kill any leukemia and see if any T cells are still there. Will be on ventilator for several days, maybe up to a week.
—Kari’s journal
April 23, 2012
Emily had two IV poles holding seventeen medication pumps, with wires and tubes connected everywhere on her fragile body. We wanted to lie beside her to provide comfort, but we couldn’t get around all the tubes and wires. She was retaining so much fluid that she was swollen almost beyond recognition. The ventilator shook her body with such a strong vibration that it had worn through the skin at the back of her throat. Blood was bubbling out of her mouth and running down her cheeks. I wanted to wipe it off her face, but I was scared to touch her. The nurse came in to check her vitals and dabbed a bit of it away.
“I can take a lot,” I said to the nurse, “but I can’t take looking at her that way. Is it okay for me to wipe off the blood?”
“You can’t wipe it off,” the nurse said. “Her platelets are low and that liquid around her mouth is how she’s clotting. If you wipe it off, she’ll bleed to death.”
You know how people talk about hell on earth? That’s what that room felt like to me and Kari.
My mom was already at the hospital with us, so she knew the dire condition Emily was in, and Kari’s mom, dad, step-mom, Sharon, and aunt Kathy were on their way. I knew Aunt Laurie was coming, too. She had a few days off from her residency rotation at Hershey and had planned her visit long before this crisis. I was glad she was coming, as she and Kari loved to discuss science.
I called my brothers, Jim and Greg, who said they would come right away and bring Aunt Sally along with them. I asked them to hold off a minute while I called Becky and Ariana. Maybe they could all come together on that long drive. The girls decided to drop everything and come, even though it was finals week at Penn State.
Becky picked up Ariana and two other members of THON, who met up with my brothers. Kari’s sisters Kristen and Brenda were coming, too. Even her youngest sister, Lindsey, would be there, though she was eight and a half months pregnant. She wanted to see Emily so badly and she feared she’d never get another chance once the baby came. There were going to be a lot of our family members gathered in that waiting room.
Kari and I were complementary opposites, but for the first time since Emily got sick, we were not on the same page. Before this moment, our jobs of hope and science had never been in conflict, both contributing to the same goal: getting Emily to her cure. Kari had no more hope and she felt that trying to raise it was a waste of energy. She sat dumbstruck with grief, unable to leave the room, holding Emily’s feet and massaging them because she didn’t want them to be cold. She had a playlist of Emily’s favorite music on her phone, which she had positioned near Emily’s head in the hope that those tunes she loved could cover over the BANG, BANG, BANG sound of the ventilator, but they didn’t, at least not for anyone else in the room.
Kari wanted the room to be peaceful so Emily could rest, using what energy she had to stay alive. She wanted it to be just her and me in the room with Emily most of the time. She had taken out the prayer cloths my mother brought Emily and set up many of the religious tokens the followers of the blog sent us. We needed anything and everything to get through this. Kari thought it was only a matter of time.
I thought the opposite. I knew
