Chapter 29

Spring busted through the sidewalks, creating rivers of green along the cracks. Long tendrils of morning glory fingered their way through rock walls to invade the flower bed near the parking garage where I sat. It was my second spring at the hospital.

From under a weeping cherry tree, I watched the smokers who laid claim to the handicap parking zone and adjoining steps winding down from the parking garage. They smoked hungrily, at all hours of the day and night, congregating in their secret tribe. I’m not a smoker, but if I were, I would have sucked the cigarette dry in the first breath.

I recognized a handful of parents out there, although we didn’t acknowledge each other. We were people from nowhere beyond the room number we occupied. We were homeless parents—some living in the parking lot in a rented RV, others wandering in and out of the parking garage, eating in our car—the closest thing we called home.

There was an unsaid rule in that sacred place: Don’t mix the outside world with the one inside those doors. We all understood that there was too much heartache contained inside those walls. So we said nothing.

I sat in solitude under my flowery umbrella, gazing at my peek-a-boo view of Sand Point Way and Husky Stadium. Cigarette smoke curled its way around me—an absurdly comforting twang of cheap tobacco, coating me in an invisible layer of nicotine. I could taste it, and wished for that instant that I was a smoker, a chaser of the nicotine rush.

When I walked back into the room, Andrew was watching an episode of Myth Busters.

“Where were you, Mom?” he asked, his eyes still glued to the television.

“Sitting on the steps out front.”

“That’s where the smoking people are. You know, smoking will kill you. Black lung. Emphysema. Stroke. COPD. Bad news. You should tell them,” he said with certainty.

I rolled my eyes and tossed a wadded napkin at him. “Where do you come up with this stuff?” I laughed.

“It’s true. I saw it on TV,” he said.

He was becoming so chatty and opinionated, I hardly recognized him.

“I like the new Andrew,” I said. “You make me laugh.”

On Day 31, Dr. Burroughs decided to fish for GVHD. Graft versus host disease could become a serious battle between the host cells and donor cells, and we wanted to catch it early before any serious complications could arise. Dr. Burroughs had ongoing concerns about Andrew’s gut being affected by GVHD, and was eager to start treatment if tests confirmed her hunch. I was on parent duty the day of surgery to perform an endoscopy and colonoscopy. Early that morning, Andrew and I were escorted deep into the bowels of the hospital for the necessary paperwork and prep work before surgery.

“Not interested! I’m not going!” Andrew told the nurse as he was wheeled into the elevator.

She had been through this many times with him, and had no problem distracting him with personal questions. The first time we met, I had given her a cheat-sheet, telling her about his love of books, video games, and of course, chickens.

“What’s your favorite book these days, Andrew?” she asked.

“Super Fudge. You know, Judy Blume,” Andrew replied.

“Doesn’t Fudge have a pet turtle?”

“Uh huh. But chickens are better. You can’t ride a bike with a turtle.”

He showed her Stuffed Frightful, squeezing the yellow felt beak between his fingers. In the next sentence, they were talking about their favorite movies. Hunger Games had just premiered in theaters and she had already seen it. He peppered her with questions about each detail he remembered from his reading sessions with Sue.

“Do you like any other action movies?” she asked as we rounded the corner in to day surgery.

“The best ever is Bourne Identity, with Matt Damon. He’s cool,” Andrew said.

“That’s a favorite of mine, too!”

The discussion immediately took off on another tangent. Before Andrew realized it, his clever nurse had calmly prepped him for surgery. Minutes later, a young doctor walked in to review medical notes with Andrew. Since he had recently turned eighteen, we were running into HIPPA laws. We had obtained full guardianship a month before, but apparently the documents hadn’t made it into this doctor’s file.

Andrew interrupted. “I don’t know what you’re talking about, but we’re talking about movies,” he said as the doctor began to describe a colonoscopy.

“So, what’s your favorite movie?” the doctor asked, setting down his clipboard.

Andrew clearly answered, “I like Bourne movies.”

Neither the nurse nor I reacted until the doctor began sputtering and turning red. He glanced at me with a look inquiring what kind of mother I might be.

“Well, I guess you are eighteen now, so sure, I imagine some people might like those kind of movies. Why do you like those movies?”

“Because there’s a lot of action in them,” Andrew replied.

The doctor looked appalled.

The nurse had long since given me the wink, realizing the doctor thought Andrew said he liked porn movies. We let him squirm a little longer before pointing out his misunderstanding.

“Which is your favorite of the three movies?” I asked Andrew.

“I like the first one, Bourne Identity,” he replied.

Quickly, the doctor looked at the nurse and realized his mistake. Just as quickly, he realized his embarrassment was not to be short-lived. I felt bad for him, knowing his mistake would surely become a staff favorite.

Jon and I were both at the hospital for rounds on Day 33. We expected the results from Andrew’s first post-transplant bone marrow biopsy, as well as results from the scope.

Dr. Burroughs began the discussion. “Andrew’s bone marrow results are back. He is what we call a ‘mixed chimera,’ which means he only engrafted part of Hannah’s cells, and remains with part of his own cells.”

I leaned back in my chair, trying to absorb another round of conflicting information.

“To greatly simplify it, there are four major building blocks in the marrow that we look for. As of Day 28, only three of Andrew’s were measurable. That’s normal, by the way,” she added. “We don’t expect to see the fourth one for a while yet.”

“What do Andrew’s particular numbers tell you?” Jon asked.

“Well, we always hope to see them closer to one hundred percent, but with Andrew’s number’s ranging from 9 percent to 90 percent, we don’t know whether he will ultimately accept or reject the donor cells. I’m hopeful, but we will just have to wait and see.”

Wait and see. I had been doing that my whole parenting career, yet this time, I was okay with the waiting. My son’s pain had diminished, and it was thrilling to watch him come to life.

To add to the unexpected news, we were told that Andrew had GVHD in his gut. I was surprisingly calm and unworried about this new information.

“How do you treat it?” I asked.

“We will start a course of steroids today, then taper him off over the next several weeks,” she said.

Prednisone. A drug we were all too familiar with. When Dr. Burroughs left, Jon and I walked back to the room and looked at our sleeping son. Jon reached out to smooth Andrew’s bald head.

“He seems to be improving a little each day. Remember how desperate things felt a month ago?”

I nodded. Even with his body ravaged by the treatment, I could tell we were in a better place than we had been for the past decade. I also realized it was the first time in years that his mouth was clear of ulcers. They seemed to have vanished, leaving only a crisscross of white scars as a reminder of a lifetime of pain.

I nestled my head in the crook of Jon’s shoulder, remembering our argument, his question, “Will you be okay?”

“I’m okay now,” I said, pointing to my chest. “With this. With Andrew.”

He squeezed me tight. “I can tell. I watched you when Dr. Burroughs was talking, and knew something had changed.”

Jon returned to work and I walked down the hall to find the children’s playroom empty. Huddling against the cold window to get cell reception, I dialed Julie’s number. She picked up on the first ring.

“Hi! I was just thinking about you. Did you get the test results back?”

I told her about Andrew being a mixed chimera and what that meant. I also told her about the GVHD.

“Is that freaking you out?”

“Not really. I’m surprised he hasn’t fully engrafted, but when Dr. Burroughs didn’t seem too concerned, I relaxed. I’m actually okay with it.”

“I don’t believe for a minute that he will reject his sister’s cells,” she said confidently. “He’s got better things to do than hanging around the hospital!”

I didn’t want to be placated. She didn’t know that I had flirted with despair. It’s not that easy, I wanted to say, but instead, I remained quiet.

“Are you there?” she ventured.

“Yep.”

“I’m sorry if I sounded uncaring. I know this is hard, but believe me when I tell you that I have this feeling he’s going to amaze us all.”

“I hope you’re right,” I said. “But it’s pretty overwhelming.”

We talked for a little while about nothing important and hung up, promising to talk again in a couple of days. I lingered in the playroom, watching an unexpected snow flurry frustrate the construction crew outside. I pressed my face to the window as the blue crane lowered two exterior wall segments into place. A crew of four people, suspended by ropes, hung from above to weld and bolt them into place. My view of the outside world was changing again.

I entered the room to find Andrew alert and ready for a walk. I noticed he had stirred the contents of his breakfast plate around, but it was clear he hadn’t taken a bite. Daily visits with a nutritionist had been added to our schedule a few days before with little progress.

Robin, Andrew’s nutritionist, was a sweet gal with smooth, perfectly tinted caramel-colored hair that skimmed her shoulders, and stylish glasses that framed her brown eyes perfectly. I patted my mouse-blonde hair, envisioning a color-job like that. Even with the fabulous hair, Robin oozed a PTA mom look about her and I could see she was no match for Andrew and his newfound teenage attitude. He called her Food Lady.

“How are you today, Andrew?” Robin greeted him for the first time.

Andrew jabbed a thumb in my direction. “Ask the Food Nazi here.”

I raised my hand a little sheepishly. “That’s me.”

Robin was scanning the stack of papers I had filled out for her. Lists that included how much Andrew ate, drank, and what his poop looked like.

“Hmmm. Let’s see. Can you point to the most accurate picture?” she asked Andrew, holding up a chart with six different textures of poop on it.

Andrew pulled the SpongeBob comforter over his head. “I’m not talking to you. Talk to the bird!” he said, thrusting Stuffed Frightful at her.

Food Lady ignored him. “Okay. Let’s look at what you are eating… a cherry popsicle, four pretzels, a rainbow fruit strip, two grapes…” She turned the pages of my journal, looking for something. “Is this all you are eating, Andrew?”

“I like beef,” he said.

Robin looked at me. “He likes beef,” I said, suppressing a laugh.

“And A1 Sauce,” Andrew said to clarify.

Now I was getting irritated. “Andrew, can you take that blanket off so she can hear you?”

Andrew pulled the blanket down and flipped his new medical bracelet around and around until the clink of chain settled back into place.

“Is he drinking enough fluids?” Robin asked me.

“We’re working on that.”

“But I’m not thirsty. Ever,” he told us.

Robin pulled out her calculator and started tapping at the numbers. “I’ll be right back.” Then she scooted from the room.

“I think we failed another test,” Andrew told Stuffed Frightful.

She came back with six bottles of water and juice, which she set on the table in front of Andrew.

“It’s pretty common for people to not feel thirsty after transplant. Maybe you can just drink one cup each hour you are awake, then you won’t have to have any more for the rest of the hour?”

Andrew pulled the covers back over his head. Discussion over. Robin handed me a stack of papers, all entitled, “High Calorie Nutrition for the Undernourished.” I looked at the list. I didn’t find pretzels or popsicles.

Andrew continued to be underwhelmed by the food offered him, so when my mom visited the next day, we tried another tactic. “You know what Hannah told me this morning?” she said.

Andrew lay in bed, disinterested, toggling between Cartoon Network and the Cooking Channel.

“She said the chickens are laying like crazy now that it’s spring. But there are no blue eggs in the laying boxes.”

Andrew rolled over to face her. “But why? Frightful always lays, even in the winter.”

My mom knew she had him hooked. “That’s the funny thing. Hannah was in the garage and she saw Frightful sitting on an old sweatshirt on the bottom shelf of your Dad’s workbench.”

Andrew sat up in bed. “What was she doing there?”

“I guess she got all puffy and hissed at Hannah when she tried to put her in the coop,” my mom said. “And she hasn’t been eating.”

“She’s gone broody!!” Andrew yelped. “We have to call Hannah!”

My mom covered a smile as she dialed our home number in search of Hannah.

“She’s screeched and pecked at me all afternoon,” Hannah told her brother. “And she won’t eat!”

Andrew looked panicked. “She thinks she gonna hatch chicks. Give her watermelon. She’ll get off the nest for that!”

“Where are we going to get watermelon in March?” Hannah asked, baiting her brother. She was the one who had hatched the plan.

“I don’t know, but she has to eat!”

My mom took the phone from Andrew. “I’ll find some and bring it to the house. Don’t worry.”

When Jon returned to the hospital that night, he brought Andrew a small plate of sliced watermelon.

“From Frightful,” he said.

Andrew ate the whole plate.