The doctors said not to worry about the fever too much. Children can tolerate a pretty high fever, and she was in the best place possible for someone who was sick. But she was getting worse. Over Friday and Saturday, she was constantly vomiting, and we had to plead with her to try to keep swallowing Tylenol for the fever. But she would throw up almost everything she swallowed, so the Tylenol wasn’t doing much good. Her fever climbed to 106 degrees and she complained of her entire body being painful.
On Sunday her blood pressure started dropping and she became lethargic and confused. Every time she breathed in and out, she would moan and grunt, her little body working hard to breathe. Her fever remained between 104 and 106, and she woke up in the middle of the night describing a pond in her room, and at one point that night she thought she had Lucy in the bed with her. The doctors ordered antibiotics because they thought this was an infection, but that didn’t make any sense to us. We thought she was reacting to the T cells, that maybe they had already started to work even though in the older men it had taken ten days, not two, to develop symptoms. No one knew what was happening for sure and the antibiotics did not seem to be working. Kari and I started to panic.
The PICU staff came in to evaluate Emily and took her right away. They rolled her bed directly into the PICU. Kari only had enough time to post a brief message to Emily’s supporters on the blog.
Em not good. Breathing not good. Blood pressure and oxygen low. Pain. Transferring to ICU. They think it’s an inflammatory response to the T cells. Also final bone marrow showed 62 percent blasts.
—Kari’s journal
April 22, 2012
We had no idea how much Emily was going to suffer over the next few days or the horrible decisions we were going to face.
Chapter 14
SAY GOODBYE TO EMILY
Emily came into the PICU confused and in pain. She was sobbing and scared of her new surroundings. We noticed that she was struggling to breathe, and her breath sounded raspy. We could feel the urgency of the medical staff as they infused her with IV fluids and medications, monitoring her blood pressure and heart rate. It wasn’t long before the PICU attending physician, Dr. Alexis Topjian, pulled us out into the hallway. We could sense the seriousness of the moment in her bright and warm brown eyes.
“Your little girl is very sick,” Dr. Topjian said. “Her kidneys are shutting down. She’s struggling to breathe, and her heart rate is incredibly high. She’s dehydrated and her blood pressure is dropping. We’re going to give her fluids and several blood products. And we have to talk about putting her on a ventilator. Her oxygen level is low, and she’s working very hard to breathe. She’s in acute respiratory distress.”
“Do you really think she needs a ventilator?” asked Kari.
“Yes, that’s what I recommend. The ventilator will breathe for Emily so her body doesn’t have to work as hard,” she explained.
“Then I think the ventilator is the best decision,” I said.
“We’ll put her on the lightest form of support,” Dr. Topjian said. “She’ll need to be sedated, put into a medically induced coma, to endure the ventilator. We’ll keep an eye on how she responds to these fluids. We call this the stepwise approach. We give her a little bit and see how she responds. Then maybe we hold off, or maybe we give her a little more. You’re going to see a lot of me in the next few hours. I’ll be spending a lot of time in Emily’s room.”
“Thank you, Doctor,” I said. “Thanks for taking such good care of Emily.”
“We’re doing the best we can,” Dr. Topjian said. “You might want to say a few words to her now, explain to her what we’re about to do.”
By this time Emily was groggy and I’m not sure how much she heard of what I was saying. Kari and I believed she got the sense of the love that was coming to her from the touch of my hand.
“Emily, the doctor thinks you’re working too hard to breathe and they’re going to give you medicine to help with that,” I said. “They’re going to put you on a machine to help you breathe, and they’ll have to put you to sleep for that. Do you understand me?”
Emily nodded her head yes, and when I glanced over at Kari, I could see the tears welling in the corners of her eyes.
“We may not be able to talk to you for a while, so we wanted you to remember how much we love you, how much we are fighting for you. So are all the doctors and nurses here,” I said. “All the people who have been reading your story online are praying for you. Are you strong enough to keep fighting?”
For the first time in almost two years of
