Chapter 14

Frightful was perched on the handlebars of Andrew’s bicycle when I pulled into the garage. On the way home from visiting Leah, an idea had been running around in my mind, and it was confirmed the moment she tilted her head to the side, and our eyes met.

“What secrets do you keep in that bird-brain of yours?” I asked, slamming the door.

She two-stepped on her perch, sensing my approach.

“You really are a beautiful girl,” I said, stroking her back.

A few downy feathers fell off in my hands. It seemed unusual for her to molt in November. Was it possible she felt the stress? Could she sense our worry? Our dogs were responding to the stress in our lives, but I found it hard to believe a chicken could sense the emotion.

Frightful allowed me to scoop her off the bicycle without protest, placing her on the grass next to the rest of the hens. She was constantly underfoot now, determined to make us notice her. She had all but abandoned her usual perch on the green wicker chair, opting for more unusual places like ogling at me from a low branch outside the kitchen window, pacing the dining room deck as we ate dinner, and more recently, taking up residence in the garage as we trudged to and from the hospital.

Andrew had been asking about Frightful nearly every day and we had been placating him with vague answers. I didn’t know when he would get to see her again, and I knew that truth would crush him. Instead of a direct answer, I delivered Hannah’s hand-drawn pictures and notes from Frightful to the hospital, where he was becoming less and less enthralled by the poor substitute for his friend.

After one brutally long day where it seemed that no matter what we did, Andrew could not get comfortable, I came home to find Hannah squatting in the pen, in the middle of a one-way monologue. “You know Brother will be coming home soon. You have to be patient, Frightful.”

She reached out to catch the hen, but Frightful slipped from her grasp, circling the perimeter of the coop.

“Krrillll…Chirp. CHIRP! Bah-bah-bah-GAWK!”

Where are you Andrew? I can’t find you!

Frightful jumped onto a cedar branch Jon had slipped through the chicken wire and regarded Hannah with a fixed stare.

“But I said he will come back! Won’t he?”

Frightful continued her complaint, punctuated by a loud, insistent chirp!, while she paced the branch.

“Why does everybody act so mean all the time? No one even notices I’m here!” Hannah’s voice became desperate, rising in pitch, ending in a sob. In that moment, my fourteen-year-old daughter was a child again, her words a heartfelt longing to understand all that scared her. “You have magic in you, Frightful. I’ve seen it! You can help him. Won’t you please help him?”

I felt like an intruder, watching my daughter implore a chicken to save her brother. I also knew her desperation for her world to be righted, to be made whole, to feel safe. God must be swayed by the cry of a little girl to save her brother…wouldn’t He?

Without disturbing Hannah, I walked back to the house and wandered around until she entered the kitchen. I didn’t mention I had seen her in the coop.

“I had an idea on the way home and thought you could help me,” I said. “I was thinking we could video Frightful in the chicken coop. Andrew could play it back on the iPad, and then maybe he won’t miss her so much.” When she didn’t respond, I added, “You could be in charge of the whole project and teach the rest of us how to do it.”

Hannah concentrated on screwing the lid back on a jar of peanut butter. Then she began slicing an apple.

“What do you think?” I asked.

She tossed the apple, peel, and core into the garbage and glared at me. I eased myself onto a bar stool, knowing I had crossed some unforeseen line.

“You want to talk about it?”

“You’re never home! And then when you do come home, all you do is talk about Andrew. Have you ever thought about how I feel?”

I winced. She was right. Hannah had been shuttled between grandparents, neighbors, and unfamiliar people from the church for so long that she had developed a hard shell around her usual bubbly personality. I couldn’t blame her. Her brother’s condition had become all-consuming, and there was little room left for her.

“I’m sorry, Hannah. I wish I could change things. I really do. I guess I thought this would be something we could do together.”

Her face crumpled. “It’s just so hard. I don’t know what to do.”

I led her to the family room where we collapsed on the sofa. Seeing an opportunity to be pet, Charlie wandered over, easing his ample body into her lap. Hannah’s hands automatically stroked his ears, and I saw an immediate softening of her face.

“I’ve got a better idea,” she said over the purring feline. “How about FaceTime? We could wire Dad’s iPad to the side of the outdoor coop. Then Andrew can see her in real time instead of having to watch her in a video. Maybe he can even talk to her through the speaker? Stranger things have happened.”

* * *

It was true. We were never sure what Andrew might do. When he got an electric bike for his sixteenth birthday, Jon and I hoped it would give him some independence. He liked to ride to the neighborhood market to buy Lay’s potato chips in the yellow and red bag. He wouldn’t touch any other brand. Soon after he got the bike, I received a phone call from the King County Sheriff.

“Is this Andrew’s mom?”

I heard traffic in the background, Andrew’s voice, and my heart gave a lurch.

“Is he okay?” I blurted into the phone.

“Yes. Just fine, but I wanted to let you know that I pulled him over.”

“For what?! Where was he riding?”

I was becoming more panicked by the second. He didn’t have a license, but the bicycle didn’t require one in order to ride in the bike lane.

“Well. It seems he’s riding with a chicken,” he said.

I heard Andrew’s frightened protests in the background, saying, “I told you they don’t make helmets for chickens!”

Knowing this was heading in a bad direction, I asked to talk to him.

“Do you understand what the officer is saying?” I asked.

“Frightful wanted ice cream,” he told me. “What else was I supposed to do?”

I groaned, wanting to wring his neck. At the time, I was infuriated that it never occurred to him how dangerous it was to ride on the street—especially with a chicken. All it would take was her fluttering into traffic, and she’d cause an accident.

Remembering that afternoon, and sharing it with Hannah, made us both laugh. It all seemed so normal, or what we knew to be normal. The warmth of a good laugh spread throughout my body, shedding some of the eternal weight I seemed to carry around all the time. I felt lighter. And wiring up Jon’s iPad to the chicken coop so Andrew could talk to his best friend was our brand of normal.

When I arrived at the hospital later that afternoon, Andrew was in the middle of an animated conversation with Sue—something that had to do with Shadow and Katniss Everdeen nuking the Capitol with AK-47 rifles. His fantasies had become more and more aggressive over the last few weeks, and I wondered if that had anything to do with him feeling more and more powerless.

A quick glance at the IV pump told me he had just received a dose of his favorite narcotic. This always brought out his chatty side, a side only Frightful saw at home. I knew it would only last for a short time until his body greedily used up the effects of the liquid pain relief, so I let them talk, slipping unnoticed into the conference room down the hall. It was by far the best room on the floor, boasting a huge picture window and an upholstered window seat that stretched the entire length of the room. I stretched out flat on my back and watched the world outside carry on without me. Displayed on the far wall was an elaborate artist sketch of their new building. I studied it, praying we would be long gone by then.

“Excuse me, are you Andrew’s mom?” a familiar voice came from behind.

I was startled to see Dr. Torgerson, the immunologist who discovered Andrew’s Trisomy 8 when he was in the third grade. It was thrilling to see him, but at the same time, I held the resentment of being passed along to rheumatology when he had run out of ideas.

“I saw Andrew’s name on the chart this morning and wanted to come by to say hello. Things don’t look to be going very well,” he said.

“They aren’t.”

“I had no idea he was still sick. May I visit him?”

“Sure,” I said, but the crazed thoughts that were zipping through my mind were: Yes! Yes! Hell yes! Please be the genie I always hoped you were! Grant me my deepest wish and heal my son!

Dr. Torgerson followed me down the hall to our room where we found Sue, now silent, in the chair next to Andrew. He was in a drugged sleep, moans of pain escaping his blistered lips. His red cheeks were chapped from a continuous fever, and his eyes sunk in to their purplish sockets. Sue reached out to still his bony legs that were in constant motion under the sheets. I watched for Dr. Torgerson’s reaction. A widening of his eyes, and a catch of his breath told me everything I needed to know.

That day, Dr. Torgerson stepped back into our lives, taking the lead in a quest for answers. And that same day, I somehow knew it hadn’t been mere chance that he walked by and noticed Andrew’s name on the wall. It brought to mind Hannah’s request for Frightful to use magic, and in that instant, I pretended that she did. While I waited for Dr. Torgerson to review Andrew’s chart, I wondered if he remembered the first words Andrew said to him when he was only eight: I think my body is trying to kill me. It was obvious now that he had been right all along.

Dr. Torgerson immediately set a team of research analysts to work behind the scenes on our behalf. When he had exhausted all possible tests that could be done in Seattle, Andrew’s blood was shipped to labs out of the country. A paper trail was laid throughout the big research hospitals in the region: Had anyone ever had a patient who presented a group of symptoms like this? Does anyone know of a person with Trisomy 8 Mosaicism who suffers from ulcerations, fevers and unstoppable inflammation seeming to come from no known source?

They were met by dead ends.

Some days, the gentle mannered immunologist would slip into our room and talk to Andrew. Mostly, he dropped by at strange hours with his gold-rimmed glasses and signature bow tie, flashing a handful of research studies he’d been analyzing.

“I’m still looking,” he’d say. Then, just as quickly, he’d shake my hand and disappear.

During that time, we fell into the habit of using FaceTime to connect with Frightful. True to Hannah’s plan, we successfully wired Jon’s iPad to the side of the chicken coop where Frightful liked to dust herself. The first time we tried it, I set my iPad in the bed next to Andrew and listened for the electronic ‘vrruuumm’ of the line making a connection.

“Fright-FEE!!” he called out when he saw her.

The chicken stood up. Clucked. Andrew caressed the screen with his finger. I was overcome with tears and turned away, pretending to look for something in my purse

“I want out of this place,” he said, talking to her.

Frightful paced back and forth in the pen. She clearly recognized Andrew’s voice, but was unsure where the voice was coming from.

“It’s scary in here, Frightful. But Sue comes and I tell her about our stories,” he told his friend. “I want to go home.”

“Crawww-cruk-cruk. Crawww.”

I am here. Waiting.

Frightful settled on a patch of newly overturned dirt and started scratching, spraying a cloud of dirt on the camera lens. Hannah’s finger appeared from the side, wiping at the lens. A second later, her face loomed into view, an impish grin spread across her face. She stuck a thumb under each arm and flapped her elbows while dancing around the coop. “Bock-bock! Bockety-bock! I am the queen of the roost!” she sang.

The chickens scattered in noisy protest.

“Stop that, you noob!” Andrew said, clapping a hand over his eyes. “You’re not a chicken!”

“Well, neither are you!” she said, sticking out her tongue.

I smiled through my tears as I watched my children play in the most unusual way. It was remarkable that under such dire circumstances we had once again found a way to create our own version of normal.

From then on, the iPad stayed in Andrew’s bed. While he slept, we played recordings of Sue reading Judy Blume’s Fudge, into which she had inserted Frightful as a superhero who saved the precocious boy from all manner of disasters. When Andrew was awake, he talked to Frightful, and Frightful kept listening. We filmed Frightful in the laying box as Hannah’s small hand reached underneath a bloom of feathers to remove the day’s eggs. We filmed Frightful in the yard scratching for bugs, and sitting on the green wicker chair waiting for her friend to come home.

Hannah’s brilliant idea turned out to be the perfect solution for two best friends, a boy and a chicken, who missed each other terribly.

Meanwhile, Dr. Torgerson broadened his search to include the east coast and eventually back again to the National Institutes of Health, where we first made contact with the doctor who was studying T8M. He found a small non-profit group in the UK by the name of Unique that had some valuable information about this genetic misprint, but nothing that described the constellation of symptoms Andrew was experiencing.

Andrew’s story traversed several continents before finding its way to a little known physician in Japan, who had published an article about a young male patient with Trisomy 8 Mosaicism. Like Andrew, this young man had been gravely ill with similar inflammatory symptoms. The physician proposed that cytokines (proteins that modulate the inflammatory response) were responsible for these unusual symptoms. He had also discovered something peculiar about his patient’s cells that led Dr. Torgerson in a new direction.

Suspecting cytokines were also playing a role in Andrew’s illness, Dr. Torgerson ordered another round of tests. A bone marrow biopsy showed that Andrew’s marrow had mutated to nearly 100 percent Trisomy 8 cells. It was clear these mutated cells had wreaked havoc to the point that his body was beginning to shut down.

Several days later, the cytokine test results arrived. Dr. Torgerson came flying into the room with a fist full of papers. “I want you to look at these!” he said, quaking with the thrill of discovery. “See this chart here?”

“Yes, but I don’t know what I am looking at,” I replied.

“This is a list of lymphokines, interleukins, and chemokines we looked at in this study,” he said excitedly.

He was pointing to what looked like a series of Greek letters, equations, and dashes. Noticing I was unusually quiet, he glanced up at me and motioned me to join him on the bench. “I know this is overwhelming, but we may have discovered something significant. On all variations of cytokines tested, Andrew’s numbers were far beyond the normal range.”

I squinted at the paper, trying to decipher the chart. In many instances, it looked like they were hundreds of times higher than normal.

“But what does that mean?”

“In essence,” he said, “Each time Andrew’s body goes through an episode of illness, his immune system rightfully sends out ‘killer cells’ to attack the foreign ones the body perceives are there—except, there are no foreign cells to attack.”

He went on to explain that the most unusual thing about Andrew’s body was that the particular cells his body produced did not die off like a normal cell. Instead, they lingered in the body, creating a firestorm of inflammation in all of his soft tissues, eventually affecting his bone marrow. “I know there is some link to the T8M that creates this cellular confusion, but I don’t know why,” he said.

Dr. Torgerson was quiet, presumably allowing me to digest this information. After a moment, he surprised me by taking my hand and saying, “I believe a bone marrow transplant may be the only option for your son.”

Silence yawned between the two of us. I felt empty, relieved, and weirdly comforted. Finally, I had my promise of a new life, or at least a tangible twinge of hope. I held onto it like a lifeline, thinking if we could just get through it, we might all survive. I nodded my okay, knowing in my gut, like Andrew had the first time we met, that this brilliant man told me the truth.