Another surefire way to make Emily laugh was poop jokes. It seemed like the doctors always needed another stool sample. That’s what no one talks about when they describe the way it is with families when a child gets sick. My family of three was tight and cozy, but we’d never had to be living in one room together for days on end. We became keenly aware of the way each other’s bodies functioned, but most of the focus was on Emily. At first Emily was a little self-conscious producing these samples on cue. One of my fatherly bonds with my sweet little girl was poop humor, the kinds of jokes that disgusted or annoyed Kari. In some ways I think that made us laugh harder. When the doctors needed her urine, we would make a bet before she went to the bathroom. Whichever one of us guessed closest to the amount of urine she produced won. Right away we discovered an ally in Nurse Karli.
In the cancer unit they called Nurse Karli the Poop Nurse. Nurse Karli had jokes and games all designed to make children relax and let go. She was a specialist at potty humor. Some of her favorites were “What’s brown and sits on a piano bench? Beethoven’s Fifth Movement,” and “Why are their only 239 beans in Irish bean soup? Because if you add one more it would be two farty.”
She also used her Poop Nurse tools to help me teach Emily how to take her pills. Emily had to take pills several times a day, and some kids had trouble with that. I was determined that Emily would not be among them. I have had to take a lot of medicine for my Crohn’s, so I know that choking down pills is unpleasant, but it’s something you just have to get done. No grousing. I practiced with Emily, teaching her how to consciously relax her throat so she could swallow the pills, but we were still struggling. Nurse Karli saw what we were up to and offered Emily a reward for successfully taking her medicine.
“This is my deepest, most secret, high-level, pediatric oncology weapon,” she said, holding up her cell phone with the Fart World app displayed on the screen. “If, when I come by on my morning rounds, your parents tell me that you’ve taken all of your medicines on time, you get to choose a fart.”
Nurse Karli looked at the screen and chose Taco Truck, which let out a mighty sound. There were twenty choices on her app, ranging from Lima Beans to Echo Chamber.
“So, I’ll be back tomorrow, and we’ll see how it goes,” Nurse Karli said.
“Nurse Karli! Nurse Karli, I took all my medicine on time today,” I said. “Can I choose a fart?”
“Did he?” Nurse Karli asked Emily and Kari.
“He did!” Emily said.
I chose Jack the Ripper, which sounded like air slowly being squeezed out of the nozzle of a balloon. This got a big smile out of Emily.
Getting Emily to smile after the leg surgeries was a challenge because the wound vacs, one on her left thigh and another on her right calf, were extremely painful. Every day of my life I will be grateful that the doctors didn’t have to amputate her legs, but the wound vacs were torture for Emily.
The wound vacs were made to fit into the wound on each leg. The nurses handcut a special piece of foam that they nestled snugly into each open wound, covered by a thin suction cup, which they secured with medical tape. A drainage tube came out from under the suction cup and connected to a portable vacuum pump. The wound vacs stood up plump on her slender legs, like little footballs. The vacuum sucked out fluid from the wounds and alleviated air pressure, which speeds up healing.
The nurses came into Emily’s room several times a day to make sure the vacuums were gathering enough fluid. Turning the wound vacs off and on grabbed at those tender nerves in her legs, causing Emily tremendous pain. She trembled whenever a doctor or nurse entered the room, anticipating the pain they were about to inflict. She was so sensitive to anything touching her legs that she couldn’t even tolerate being covered by a sheet. It was brutal for Kari and me to see her in so much pain.
Emily was also on steroids, which made her moody and bossy. The first day the steroids kicked in she ordered us out of her room. I forget what we did that displeased her, but she surprised us both when she extended her arm, pointed to the door, and said firmly, “OUT!”
We stayed in the hallway until she summoned us back in. Some days she gave us several “time-outs” a day. On those days I wished that Jasper, the therapy dog, was an on-call service animal, because every time he visited the oncology unit her mood changed to tenderness, at least for a while. It was a pity Jasper came only once a week.
After spending almost a week in the PICU, Emily was transferred back to the oncology unit. It was great to be back on the cancer floor. I never thought I’d say that! When we walked in, greeted by the oncology nurses we’d come to like and trust, it felt like a homecoming. Nearly having Emily’s legs amputated changed our perspective. We hadn’t thought anything worse than cancer could happen to Emily, but the leg infections made us realize cancer introduced many more problems than just the disease.
I was thinking a lot about how getting sick was shortening her childhood. Emily had always known her own mind, had strong preferences, and hadn’t been
