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.
Chapter 15
With a simple nod of the head in Dr. Torgerson’s direction, we entered a time called Discovery. It was the time to look into every possible aspect of Andrew’s medical condition to determine whether or not he was even a candidate for transplant. Due to his unique genetic condition, they suspected it would be difficult to find a good marrow match. The first place they planned to look was his closest family member—his sister. If she was not a match, they would post a global search, hoping there would be someone, anyone, who would have a close enough genetic makeup to be an acceptable candidate.
“Chances could be slim,” we were told.
We agreed to take ‘slim’ over the agony of nothing.
It seemed fitting to me that Andrew’s sister could be the person to save his life. Since the first days Hannah could walk, she designated herself as Andrew’s caretaker. She would carefully set out his clothing in the morning for school and make sure to point out whether or not his shoes were on the correct feet. She corralled him, followed him, encouraged him, and learned about every subject he was interested in. She did all of this just so she could relate to him and spend time with him. She was his biggest cheerleader. I would often ask their pediatrician what I could do to redirect her and remind her that he was not her responsibility, but any suggestion failed.
I named her Hannah Grace, and the name fit her perfectly. When there was no room to show Hannah the love I had for her, I gave her new names to quell the feeling that I was not a good enough mother.
When our family’s future became uncertain, she came to me and said, “I don’t really like growing up. I want to stay your little girl. Can I do that for a while?”
And because she was growing up too fast and I didn’t know how to stop it, she became Teeny, and then Tiny, and for one crazy day, Tortellini. When she was told she might be the savior—a donor of the marrow that could save her brother’s life—my emerging young teen slunk back into the little girl she remembered as being safe.
“Will my brother live?” Teeny spoke to me in the darkness.
“I don’t know,” I whispered softly back.
Three days later, Hannah agreed to be tested as a possible match. Three more weeks passed with no word. There were nights we were certain we would lose Andrew, but then he would wake up, his fever having subsided, and back would come our quirky and mysterious son who communed with chickens.
When I asked Becki what I could do to keep from drowning in uncertainty, she replied, “Just be with Andrew. Enjoy him today. We can’t pretend to know what’s coming.”
On another occasion when she called to check in, I was sitting on the front steps of the hospital under a cold, wet sky, feeling like the rain and the wind were the only ones who understood my grief. I told her I wondered if there was something wrong with me because I felt an aching in my depths that never left.
“This whole situation sucks. Let it suck,” she said. “You gain nothing but wasted energy by trying to pretend. Lean in, and let it be what it is. Then trust yourself to do what you need to survive this.”
I tried to trust. Trust the doctors, trust my gut, trust that Andrew was strong enough to survive. But I wasn’t sure if I was ready to trust God. My vision of God was blowing up in front of my very own eyes. I didn’t even know what trusting meant.
“Is God trustworthy?” I asked her one night when she visited the hospital.
“Trustworthy…yes. Here with you…yes. Easily understood…not so much. I don’t believe the terrible things that happen to us are the way God wants it. When things go bad, I usually cry out to God. I beg Him to fix it so I can breathe again—at least for a few minutes,” she replied.
Each time I spoke with Becki, I had to marinate in her words for a while before I could internalize the truth in them. Our conversations sparked in me a desire to capture all the feelings that were threatening to overcome me. I began to write. I wrote on napkins, scraps of paper, and receipts. I snagged brochures from the hospital lobby and began drawing images, sketching around the emotions that spilled from me in a torrent of grief, gratitude, and wonder. I copied scripture to remind me that I was not alone. Sometimes I wrote a prayer as simple as a thank you; other times I wrote poems and love notes that I slipped into Jon and Hannah’s pockets, stuck to the mirror, or placed in a coffee cup—something they would find in the morning when they dressed. It was my way of reminding us that we would survive.
As I walked in the house late one evening, Hannah wandered into the kitchen with Charlie’s front half held between her hands. His huge back end was swinging at her knees—a feline pendulum. “Grandma Cherry left you a note on the fridge,” she said, slowly dropping the cat onto one of the bar stools.
My mother had been picking Hannah up from school every day and staying with her until Jon or I could relieve her. Her round handwriting, a hybrid of printing and cursive, stated, “Foodie in fridge! Soup and salad! Yummy bread!! Dessert on counter!!!”
Hannah scooped a huge spoonful of apple pie into her mouth as I reached for a Veranda design magazine with dog-eared pages and yellow sticky notes with arrows all over them.
“Oh, and she left you that, too,” she said around a mouthful of hot pie.
A Starbucks gift card slipped from the inside cover. “For a treat!” it read.
I sat next to Charlie in a daze. It was all so thoughtful, but sometimes I just wanted her to sit down and talk to me and listen to what my week had been like. I wanted her to hold my hand, tell me I was a good mom, reassure me that I was doing all the right things. But that had never been her thing. Talking softly is not her love language.
My mom lives her life in exclamation points. Her energy is palpable. As far back as I can remember, she has always served on educational boards, city planning commissions, as president of the PTA, and myriad local fundraisers for the community. She is a natural magnet for people, drawing them into her circle while making them feel comfortable sharing all sorts of tidbits of personal information. So when someone in her family is ill or in pain, she does what she does best: She takes action. My mom’s care comes to me as soup in the fridge, a loaf of crusty bread from the Macrina Bakery in Seattle, and hot gooey apple pie. It smelled like home and everything wonderful I remembered about growing up. “Life is short,” she would say. “Better start with dessert first.” And I did.
A few days later, my mom spent the afternoon with Andrew while Jon and I met with his medical team. Andrew continued to get weaker, and it was clear they were struggling with where to start. Dr. Torgerson had petitioned our insurance company for a transplant in hopes of eradicating the T8M in his marrow, but since nothing like it had been attempted before, they were dragging their feet. After the meeting, Jon left for work and I walked back into the room to find my mom in her usual spot, snapping a fresh piece of Trident peppermint gum and flipping through a current issue of Vogue magazine.
“Hi, Kris! Andrew and I have been visiting, talking about deep fryers. He found one he wants.”
Andrew held up his iPad. A full-sized picture of a commercial deep fryer with the convenient price tag of $3,200.00 was slapped across the front in a red banner. I looked over at my mom with an oh-yeah-sure look. She tilted her head in my direction and smiled.
“You’re going to buy him that?” I challenged.
“If he wants.” She tore a page from the magazine and kept flipping.
“Yeah. And I want a big one that can fry ten baskets of fries at a time,” Andrew said.
Never mind that he had been unable to eat anything for the last eight months, and anything deep-fried sounded like a basket of rotgut to me.
“Looks like you’re having a good day,” I said, sitting on the side of his bed.
“I will need a chef hat, too,” Andrew mused. “So I can be a deep-fry chef.”
My mom had always encouraged Andrew to dream big. Nothing was set in stone; nothing was impossible. She taught me that, too, but for some reason, I had begun to put a filter on that. My dreams had been knocked around one too many times and I was feeling a little bruised at the moment.
Andrew dropped the iPad on the bed and disappeared into the sheets. I knew the pain medication was wearing thin; the color in his puffy cheeks was deepening. I checked the notes on the IV pump and saw that he was not due for another dose for two hours.
“It only works for a short time now,” I said, mostly to myself.
My mom glanced up from her issue of Vogue, a pained look on her face. “Here, you take this,” she said, handing me the magazine.
We talked for a few minutes, then she was gone.
The next afternoon I was home, finishing my last load of laundry, when the phone rang. “Are you sitting down?” a familiar male voice said without taking time for introductions.
“I am now.”
The doctor in the Complex Care Unit said, “I have great news! The marrow results came back today. Your daughter Hannah is a perfect ten-for-ten match. It’s unusual to get such a close match. Do you know what that means?”
I sucked in my breath. “I think so,” I answered cautiously.
“Hannah is not only a good donor match for her brother, but her marrow matched perfectly in ten categories out of the ten we measure. It’s the best possibility for a successful engraftment.”
I still didn’t completely get it. “Explain engraftment.”
“Well, you can think of it like a handshake. Andrew’s body will need to recognize his sister’s cells as being good cells and not try to destroy them. When his body allows her marrow cells to set up camp and multiply, then it’s called engraftment. We always hope for one hundred percent engraftment, but it’s not always the case.”
Now that his words were sinking in, a million questions began zinging through my brain, but I couldn’t catch a single one.
“Do you have any other questions?” he asked.
“What does this mean for Hannah?” I blurted out when my mind slowed enough to form the words. I wondered if I would be putting both of my children in harm’s way. I couldn’t bear the thought.
“It’s usually pretty straightforward for the donor. She will have several more blood tests before we can move forward with transplant. On the day of transplant, she’ll be put under anesthesia, and we’ll draw the marrow from her hip bones.”
I felt lightheaded and realized I was holding my breath. Leaning back against the dryer, I blew my bangs away from my face. Was this for real?
The doctor prattled on while doubts continued to plague me. “Young patients like your daughter bounce back quickly. She’ll be tired, but she should be able to go back to school right away. We can go into more detail later.” He paused for a moment, leaving the connection silent. “Congratulations! This is great news!”
I hung up the phone, put my mind on autopilot, and finished folding the laundry before calling Jon at
work. It was clear we were on a speeding train and there was no getting off.
I took a deep breath and dialed. “You won’t believe the phone call I just got!” The words came tumbling out as I told Jon every detail of my conversation with Andrew’s doctor.
After a moment he whispered, “Amen.”
When I saw Andrew that afternoon, he was listening to a new audio file Sue had made for him. I told him without too much detail that his sister was a perfect DNA match, that she would be able to give him some of her healthy cells. I don’t know what I expected, but his response surprised me.
“Will she save me?” he asked.
My breath caught in my throat. Will she save me? How was I to answer that when I didn’t even know the answer myself? I stroked my son’s hot cheek, reaching over to tuck the blankets tightly around his long, slender body. I pressed my lips to his forehead and whispered, “I love you.”
Jon and I decided to share the news with Hannah that evening. She responded with a shrug. “Good. Now we can get on with being a normal family again,” she said, plunking down on the sofa with a tattered library copy of The Great Gatsby.
I glanced at Jon from across the room.
“It’s not quite as simple as that.” Jon delivered the words gently. “There are no guarantees. We don’t know what your brother’s body will do with the new cells, nobody does, but there is a really good chance it will work.”
“What do I have to do?” she asked cautiously, eyeing both of us over the top of her book.
“I think it’s a simple procedure, and the recovery is quick. You will be asleep for it.”
She paled.
“You can think about it, Hannah. You don’t have to do it. But if you decide to be his donor, no matter what happens, you will be giving him a chance at life.”
“Okay. Fine. Whatever,” she said, her face turning crimson, a hint of tears shining in her grey-green eyes.
The look on her face told me it was not fine.
She picked up her school bag and turned to go upstairs. “I’ve got homework.”
The Chicken Who Saved Us Page 12