Over the next few days some of our family stopped by to visit. Aunt Laurie brought her teenagers Meaghan and Nate, and Kari’s sister Kristen and her fiancé, Nick, visited. When Kari’s mom, Pam, or “Nana Pam,” as Emily called her, came to visit, she encouraged Kari and me to take a break and leave the hospital for an hour or two.
We decided to drive to Target to pick up a few things, but once we were outside of the hospital, we understood why Emily felt so sad when we’d taken her out. The world seemed too bright and noisy, and oblivious to what was happening to us. People walked by chatting on their phones and laughing. Cars passed by blaring summer pop tunes. We felt like we no longer fit into everyday life. We quickly shopped for the items we needed and hurried back to the hospital. Emily cried when she saw us. She had missed us. We knew it would be quite a while before we did that again.
We were anxious for it to be Tuesday so we’d have a confirmed diagnosis. We signed the permission forms for the diagnostic tests on Monday evening so Emily could begin testing first thing in the morning. The nurses explained that once Emily started chemotherapy it would not be long before she started to lose her hair. Her hair was one of her best features: lustrous, thick, and chestnut brown. Kari had it cut at chin length for the summer, with straight bangs that framed her face beautifully. I didn’t think that Emily would take it very well when it started to fall out. The social worker explained how some parents like to get their child’s hair cut right after the diagnosis so that when it starts to fall out there will be only little wisps to brush away. It just so happened that local stylists volunteered to cut patients’ hair at the hospital once a week and would be stopping by that day. The stylist gave her a cute, and very short, pixie cut.
I thought she looked adorable with her new haircut but Emily was furious. Kari was angry at me, too, because she thought I’d acted too quickly. She felt that we were taking something else away from Emily when she already had so little control over what was happening to her. But what was done was done. We had to focus on things that could make Emily happy, or at least distract her.
The thing that made Emily truly happy that day was a visit from Jasper, one of several therapy dogs that came around once a week. Jasper was a mutt with a shiny black coat. You didn’t need a pedigree to help a child heal. The moment they met in the hallway outside Emily’s room, her mood transformed. She loved Jasper and was so sweet with him. We were grateful her haircut happened to be on his visiting day.
On Tuesday morning, we met with Dr. David Ungar, who would be Emily’s primary oncologist. He explained that two of the tests—the bone marrow aspiration and the lumbar puncture (also known as a spinal tap)—would be painful. Emily would have to be sedated to endure the long needles he would be using to get the samples from her. I could see how anxious it made Kari to think about Emily being in so much pain. After all I had experienced with Crohn’s disease, medical procedures didn’t scare me, and I wanted to be there for Emily. Dr. Ungar said it was okay for me to stay in the room while he took the samples.
I watched Dr. Ungar sedate Emily through her IV. He explained that Emily would be semiconscious during the procedure, but she wouldn’t remember any of the pain she went through.
Dr. Ungar warned me that Emily might become emotional and say hurtful things as the medication started to take effect. I pulled a chair up to the exam table so I could be close to Emily and hold her hands in mine. He turned Emily on her side to face me. When the drug took effect, Emily was whimpering and crying softly. I watched Dr. Ungar insert a long needle into a blue plastic handle, gripping it between his middle and ring fingers, making a tight fist. He jabbed the needle deep into the saddle of her rear right hip, pushing and turning the handle until he felt the needle break into the bone. Emily’s cries became louder when she felt the pressure of the needle.
“Why are you letting them hurt me, Daddy?” she whimpered. “Make them stop! Make them stop!”
“Everything’s going to be all right,” I said softly stroking her head. “This won’t take long.”
Next Dr. Ungar collected a sample of Emily’s cerebrospinal fluid, probing her spine with his fingers to find the correct spot to guide the needle between her vertebrae. Her spinal fluid dripped into a small collection tube. The procedures were exhausting for Emily. She went right to sleep afterward and was still sleeping when we returned to the room.
Kari was making great progress on the blog. She’d already finished describing how we learned that Emily was sick and why we were at Hershey. She was just waiting for me to read it over before she posted it on the website. I appreciated the way Kari wrote, how she managed to express what was happening without getting corny or sentimental like I would.
I only wanted to add one thing, about the whispers. Kari wrote,
Everyone keeps saying “but she was healthy, she wasn’t sick, was she?” No, she wasn’t sick. She had plenty of energy, was eating great, wasn’t losing weight. She seemed absolutely fine… until the little things I had started to notice began adding up.
I’ve heard Oprah say, “Listen to the whispers in your life.” Yes, I just quoted Oprah! But it really seems to apply here. Little things
