That night when the nurses came in to adjust her wound vacs, Emily was angry with them.
“All you do is come in here and hurt me!” she screamed.
She was screaming in pain, and yelling for them to stop, but the nurses had to finish the job.
“Emily, you’re doing so well,” I said, once the nurses were done. I sat holding her close. “You have to be brave. You have to stay strong.”
“You keep telling me to be brave,” she said to me with fury. “I’m not brave!”
“You know, Em, they only pick the bravest kids to fight cancer,” I replied.
“You keep saying that. It’s not true!” she said. “I’m not brave. I’m scared. It scares me every time the nurses come in.”
“You know people who are called heroes have done something heroic in their lives,” I said. “They were scared for their lives when they did it. Being scared means you’re human. It doesn’t mean you’re not brave. You’re brave because you keep fighting.”
“No! It’s just too hard!” she yelled.
I felt her tiny body relax into mine and knew she was on the edge of sleep. The screaming and pain had taken so much out of her.
“I don’t care if I get better,” she whispered in a voice not meant for anyone to hear. “They’re not doing this to me anymore.”
When we were sure she was asleep, Kari and I huddled close, because now we were scared. We had taken Emily’s gumption and determination for a given. We had never heard her say something like that, and if she was shutting down, we thought it would be tough to get her back.
We agreed that we’d ask for a consult from a child psychologist. Emily had plenty of reasons to be upset. If she needed help mentally, I didn’t want to be that stubborn dad who thought an encouraging word or her parents’ love was enough. Psychology was not my thing, but then neither were prayer cloths.
One of the senior psychologists, Dr. George Blackall, came to see us the next day. He happened to come at a time when Emily was in a good mood. No one had fussed with her legs in hours and her pain was under control. She was coloring quietly, and we had music on for her. Kari was writing on the blog and I was looking out the window. Our new domesticity in the hospital.
Dr. Blackall motioned Kari and me out into the hallway for a word.
“I just wanted to tell you one thing,” he said. “Your daughter screaming is the best thing that can be happening. She’s on steroids that affect her mood and when she’s screaming, she’s exercising her lungs. That helps keep them clear of fluid, and she’s less likely to get pneumonia.”
“She screams at anyone who enters the room now and orders them not to come in,” Kari said. “I feel bad for the nurses.”
“Ah, don’t worry about that,” the doctor said. “These nurses are used to handling children screaming out of pain and frustration.”
“Yesterday, what made us ask for an evaluation was when she said she didn’t care if she gets better,” I said.
“She’s still talking to you. She trusts you enough to let you know exactly how she feels,” he said.
A nurse brushed by us to attend to Emily.
“Oh no!” Emily yelled. “Not you! Get out of my room!”
The doctor grinned at us.
“I don’t worry about the kids fighting cancer until they go quiet,” he said. “When they go silent on me, there’s something going on in their heads that may be hard to fix. Screaming is perfectly normal. Let her scream her head off. None of the medical staff are going to take it personally. Okay?”
“She’s fighting,” I said.
“And she’s in a fierce fight,” he said. “It’s the battle of her young life.”
“That hurts! You don’t know how to access my line,” cried Emily. “Get me a nurse that does. You don’t get to try again!”
“She’s fighting,” said Kari with a rueful look.
“Yes,” said the doctor. “And she’s doing as well as anyone could hope.”
Chapter 5
YOU’RE IN CHARGE OF HOPE
The days in the hospital room were long during this second stay. We trusted the staff, and the doctors were treating Emily with the best care, both emotional and medical, so we didn’t have any battles to fight, and that was a blessing. Emily’s legs were slowly healing. No amount of screaming and yelling would make that go any faster. Whatever the day presented, we’d deal with it as it came. Was she hungry or thirsty? Was she in pain? Did she need to walk a few minutes to strengthen her legs? Whatever it took to get through the day so we could be there tomorrow.
It’s not a rousing battle cry: “Let’s get through today!” The pressures this new life created filled up all the space in that hospital room.
I spent several hours a day on the phone with the insurance companies. I’d get on the phone with one person and they’d want to continue the call at another time, after they gathered more information, but they never called me back. Then I couldn’t get that same person back when I called again. I’d get someone else who would say that he wasn’t familiar with Emily’s case and asked if I
