I made a move to go after her. “Let her go,” Jon said, patting the space on the sofa next to him.
I watched TV with Jon as a running dialogue of our unspoken conversation churned in my head. I tried to imagine what Hannah was thinking—the words she hadn’t spoken. Finally, I got up and followed her up the stairs. “I wish you hadn’t walked away,” I said, sitting on the edge of her bed. She was facing the wall scanning YouTube videos on her phone.
“How am I supposed to react when you say something like that? I don’t really understand what I have to do, anyway.”
I didn’t blame her for feeling so confused. I barely understood what we were getting ourselves into either.
“I’m afraid it will hurt, like all those operations Andrew has to go through. He screams sometimes in the bathroom at night and I can’t shut out the noise. Why does he have to do that?”
I thought of the countless biopsies, needle sticks, infusions, and scopes he had endured over the last year searching for clues. Like Hannah, I remembered the nights he lay on the bathroom floor and cried. I sat there feeling sick, my mind devoid of any comforting words.
Hannah turned to search my face, looking for answers. “You think I can’t hear it,” she said. “The next day you act like nothing happened. You expect me to pretend to be normal. But nothing around here is normal. I’m scared. I wish you would get that!”
She tossed her phone to the foot of the bed, where it slid off and landed on the floor with a thud. I tried to snuggle next to her like I do most nights, but she refused, so I rolled to my back, hugging the edge of the bed.
“What do you want me to do?” I spoke into the dark room. I had a desperate desire to make her feel better, to take the pain away—although I knew perfectly well that I couldn’t.
Hannah stared at the mobile hanging from her ceiling—a leftover science project from a long ago astronomy lesson. “Mom, why don’t you look at me?” she said, turning my face towards her. “I feel like you don’t even see me when I talk to you. Why do you do that?”
How could I answer that when my brain was working in slow motion and my heart was breaking?
“I’m so sorry,” I answered, swallowing back tears.
I was too tired to come up with anything better, so I circled an arm around her shoulders—protecting her from the scary unsaid thoughts flying around the room.
Her voice was quieter now. “You say you’re spending time with me, but I know you’re far away. You’re with Andrew. He’s the one who takes up the most space in this house.”
She was right. He did take up the most space in our house, and it was suffocating us all.
Hannah rolled toward me, reaching out her hand. “You always look at me with sad eyes. Why can’t you just be happy?”
I thought about her question for a while. “I’m happy that I have you and Andrew and Dad. My heart is just heavy. Very heavy.”
Her response was to pile blankets and stuffed animals on top of us both, creating what she called a ‘nest.’ Her chemistry book was pinching my leg, but I didn’t dare move. I used my foot to nudge it over to the other books piled on the bed.
“Can I ask you something?” Hannah whispered into the darkness. She moved her body toward mine, tucking her legs behind me, spoon-like. “What’s going to happen to my brother? Tell me the truth.”
There it was. She had asked the question I was afraid to answer, and now it was out there floating around the room, bumping into walls, knocking things over. I let out a puff of air, my mind unable to focus on the seriousness of her question. In truth, at that moment, I was fantasizing about a really hot shower, perhaps some dinner, then sliding into bed and falling into oblivion.
I wrestled with my heavy eyelids and turned to face her. Brushing an errant curl back from her face, I said, “Truthfully, Teeny, I don’t know what will happen. He has the best doctors in the country, and we live in the best city for a bone marrow transplant—especially one as complicated as your brother’s. I believe God made you a perfect match for him. And I also believe God keeps his promises.”
“Does God promise to heal Andrew?”
“I don’t know. But I do know that God promised to never leave us. And I’m betting our lives on that.”
It wasn’t a perfect answer, and I was still trying to believe it myself, but it was all I had to offer.
Chapter 16
Finding out Hannah was a perfect marrow match for her brother was a mixed bag of blessings we had to sort out. She carefully sidestepped any conversation with me for the next week, until one afternoon after school we decided to go to the mall for a little retail therapy. Hannah was unusually quiet in the car, so I casually turned off the radio and waited. There’s a universal understanding between teenagers and parents: It is only acceptable to talk about important things to a parent when they are driving or otherwise occupied. No eye contact is required; it’s easier that way.
Hannah was thinking, loudly. “Mom, you know the other night?”
I knew what she was referring to. She’d been circling me all week, never quite ready to talk. “You mean when we found out you could be a donor?”
“Yeah. Well, you just surprised me. I didn’t know what to say. It freaked me out a little,” she said staring out the window.
I knew better than to respond, so I waited. Don’t respond immediately: That’s another universal teenager rule I found infuriating to follow.
“It’s just that I don’t really understand,” she said, finally turning to look at me.
That was my signal to talk. And we did. We talked about everything that was happening in our home, how it felt like Andrew had been sick forever, and why they couldn’t just do the bone marrow thing today and get it over with. She never mentioned the sticky notes I left for her on the mirror, yet during our conversation, it became clear she had read them all.
“How much do I love you, Hannah?” I said as we circled Bellevue Square mall for the sixth time.
“From the North to the South, and the East to the West, and everywhere in between,” she replied with a hint of a smile in her voice.
I took her hand and squeezed. “That’s right. Please don’t forget that.”
The next day, I told Julie about my conversation with Hannah while we chatted on the phone. Frightful was in my lap, pecking at an apple core. Again, I noticed she had lost a few feathers. Should she be molting this late in the season?
“I’m glad she talked to you. That’s half of the solution,” Julie said.
“But I still feel like a terrible mother, like I’ve abandoned her. When I’m home, I barely have the energy to attend to what she needs. Then we dropped a huge bomb on her the other night. I was too overwhelmed to think about how she would feel about being his donor.”
“She’ll get past it, I promise. Just start saving money now for her therapy.”
I laughed despite myself, realizing there was probably much truth to her words.
Julie quickly changed the subject. “Why are they making you wait so long for the transplant meeting? Can’t they move faster?”
I had asked the same question, but the harder we pushed the doctors, the more they pushed back. We were learning that ‘discovery’ was not a quick process. So we waited, and practiced patience with gritted teeth.
“To be truthful, I think they’re still unsure what to do. There’s no category to put us in, and I think that makes people a little nervous is my guess. We’re scheduled to meet with Dr. Burroughs, a specialist in pediatric non-malignant transplants, next week. Even then, there’s no guarantee she’ll accept our case.”
“What if she doesn’t take Andrew on?”
Frightful starting pecking at my fingers. I shooed her off my lap and she let out an indignant squawk! in protest.
“It’s crossed my mind, but I can’t think about it,” I said.
The line was quiet as both of us considered the possibility.
Julie was first to speak. “Andrew is strong enough f
or this. I’m choosing to believe that.”
After we hung up, I thought about what Julie said: Andrew is strong enough. Yes. I believed that. But was I? Was my heart strong enough to watch my son go through hell and not know if he would make it back?
Both Andrew and Jon were asleep when I arrived at the hospital. For three days, Andrew had undergone tests on every body part they could biopsy, examine, scan or draw blood from. He had become withdrawn and even refused to engage with Sue when she visited.
I stood over my son, placing my hands on his frail body. “You are strong enough,” I whispered.
Jon opened one eye, then sat up. I joined him on the cot, resting my head against his shoulder. “How’d it go today?”
“Okay, I guess. I tried to explain to him about the transplant, but either he didn’t want to know about it, or he doesn’t understand. He told me Frightful would give him some of her power.”
Something inside me tightened, a cinching of my guts. “What did you say to that?”
He shook his head, “What could I say? He’s determined. He believes she has some sort of power.”
Jon left a few minutes later and I took his place on the bed, feeling the lingering warmth of his body while waves of anxiety floated around me, refusing to settle. Had the Frightful thing gone too far? Were we allowing our son to escape reality by talking to a bird, even believing that bird could somehow save him? Had I bought in to this fantasy, too? At some point I must have sunk into sleep, because I was pulled out of my dreams at 3:15 a.m.
Sue’s steady voice filled the room, soft and lyrical. Even with my eyes wide open, I could only make out the shadow of the IV poles and the lump of Andrew in the hospital bed. What was she doing here? Was I still dreaming? I lay still, searching for the familiar landmarks: clock above the door, whiteboard next to the bathroom, blue rocking chair at the head of the bed. Once I was oriented, I noticed the faint glow of the iPad coming from under Andrew’s sheet. He was listening to one of the recordings we made of Sue.
“Do you think Shadow will live?” Andrew asked over the top of the story.
Sue’s voice continued its narration of Super Fudge.
“Shadow is scared. He is really sick.”
Knowing that Shadow was Andrew’s alter ego because his health issues were too scary to face alone, I held my breath and felt my heart shatter. Sue kept reading.
“They think I don’t understand, but I do. I don’t want to die.”
I stifled a sob, recognizing how brave my son was to admit the truth…to own his fear.
“I miss Frightful. Why can’t I just go home?”
Long after Sue’s voice stopped and the sound of Andrew’s breathing filled the room in its place, I lay awake, broken. Andrew had always had the ability to purge his feelings in a story. So why had his nocturnal conversation destroyed me? Why couldn’t I shake this feeling that my world was unraveling and there was nothing I could do to stop it? I carefully studied my sleeping son, his breath long and deep, his body limp, wondering where he had gone. Where was the quirky boy with the obsessive talk about chickens, dinosaurs, World War II, and dirt bike races? The kid who would ask me every morning when I woke him up what he was going to wear and what I was planning to make for dinner that night? Had he disappeared inside his pain and become lost?
I saw little sign of light from him until a huge, muscular man walked into our room two days later.
“Not another vampire!” Andrew moaned when he saw the plastic bin full of needles in the Phlebotomist’s hand.
I stared at him, stunned by his connection between a simple blood draw and the blood sucking tendencies of a vampire.
“I’m not just any vampire,” the man replied.
“What kind are you?” Andrew asked with general interest.
“I can do magic tricks,” he said with a grin.
“What are your superpowers? Can you run at the speed of light? Can you fly?”
A deep rumbling came from the man’s belly, followed by a huge toothy grin that spread across his face. He made a show of grabbing the wall for support as Andrew’s nurse poked a head in the door.
“Everything okay?” she asked.
“Yes ma’am,” he said with a wink in Andrew’s direction.
“So you’re a real live vampire?” Andrew asked again to clarify.
“At your service. Now, if I can just see this arm.”
Andrew pulled a skinny arm from underneath the blanket.
“Oh yes, you have a perfect vein here,” he said in a spooky voice.
He showed Andrew his empty hand, then closed his fist, tapped his hand twice and peeled each finger back to reveal a tiny butterfly needle.
“Watch closely,” he said.
Before either of us noticed, the vampire had flicked the needle into the soft crook of Andrew’s arm. Seconds later, he stuck a Scooby Doo Band-Aid on his arm and left.
“He was the coolest vampire I’ve ever met,” Andrew said in awe.
Sue came by to read later that afternoon, her bright smile and easy manner instantly put us both at ease, forcing the events of that haunting night to the far reaches of my mind. Andrew shared his vampire story, which I noticed became more and more spectacular as the story went on. Soon the two of them were transported into Andrew’s secret world, Sue leading the way with her soft and confident voice.
Sue was reading Catching Fire, which she had downloaded on her phone. It buzzed in her hand and she saw a single word: Shadow.
Puzzled, she continued to read. Her phone buzzed again.
A text read, “Shadow is scared.”
“Is that you, Andrew?”
She put down the phone and peeled back a pile of blankets on the bed next to her.
Andrew cradled his iPad in his hands, offering up a limp smile that hung on his face a moment before fading.
Sue put down her phone. “Tell me more.”
“Shadow is bad-ass,” Andrew said, his face becoming closed and serious.
Sue picked up the little action figure from Andrew’s bed and studied its oversized star-shaped head, black and red body, slanted eyes and fearsome scowl. But it was the figure’s white fists that intrigued her. They were large and strong, held out in front of its body in defiance, as if ready to fight. She handed Shadow back to Andrew.
“Shadow misses his birdy-bird. He doesn’t know if he’ll get to go home,” Andrew admitted to Sue. “Shadow lost his best friend.”
Sue remembered reading about how Shadow had lost his friend in the Sonic Series. It was easy to see how Andrew had melded two lives—his, and the little hedgehog. Sometimes facing his life alone was too frightening, and he needed his hero’s strength, bravery, and power.
“What would Shadow do if he were home?” Sue asked.
“That’s easy. Go for a motorbike ride with Frightful. She loves bike rides. She doesn’t have a helmet, though, so she rides in my coat so the wind doesn’t get in her eyes.”
That day was the first time I realized Shadow had become Andrew’s alter-ego, the side of him that was wrestling with the terrifying reality of what was happening to his body. From then on, Shadow became the central character in Andrew’s stories and was not limited to space and time, but often traveled from book to book, making friends wherever he found himself, friends who had the power to help, to heal, to rescue.
A week later, Jon and I sat in the sixth floor conference room at the SCCA (Seattle Cancer Care Alliance) overlooking Lake Union. Although it was only a transplant consult, we were secretly hoping for a tentative date to be set for the procedure to occur. We knew Hannah was a match, but we were waiting to hear if Andrew’s body could sustain a transplant. As far as Andrew was concerned, Shadow was ‘bad-ass strong,’ which meant Andrew was ‘bad-ass strong’ as well, and we were counting on that.
At exactly one o’clock, Dr. Burroughs stepped in, trailed by two Physician’s Assistants. They quickly laid out a stack of Andrew’s medical files, pulled up his current blood test res
ults from the computer in the room and vanished. Jon and I looked at one another expectantly, then across the table at Dr. Burroughs.
Dr. Burroughs was a petite woman in her mid-thirties. Her demeanor was gentle and approachable, but we were not fooled. Her grey eyes spoke of intelligence far beyond that of her Anthropologie sweater set, sensible skirt, and heels. She was all business and spoke in a language that Jon and I would be required to learn. Quickly.
It was immediately clear to us that Dr. Burroughs was a brilliant doctor and that she had come well prepared to our meeting. She discussed the process of transplant and the very real life-threatening risks that go along with it. We learned about various degrees of graft versus host disease (GVHD), a condition where the donor cells refuse to cooperate and attack the host, causing a variety of horrific complications that can cause death. She also warned us about the very real possibility that Andrew wouldn’t survive the chemotherapy and radiation conditioning required before the transplant.
She was direct, and she didn’t mince words. “Andrew’s case is difficult, making these risks even higher. I won’t do it unless I can determine it is at least a ‘reasonably safe’ option.”
The threat of losing him seemed more real now. Somehow, I had been able to keep that fear and potential reality at bay. But here it was, filling the room, and I couldn’t avoid it.
“How will you make that determination?” queried Jon.
“The great news is that he has a perfect sibling donor. There is no better match and no better chance at a good engraftment. But my first concern is to take a closer look at his liver. I’ll schedule a biopsy for this week,” she said, opening a file from the top of her stack.
We knew his liver had been seriously compromised over the last several years; we also knew a bad report would be a game stopper. I wondered if God could wave his arms and miraculously fix his liver. I made a mental note to tell Julie to ask her prayer warriors to work on that one. It couldn’t hurt.
Dr. Burroughs continued on, describing a two-week long intensive evaluation Andrew would have to go through prior to transplant. Jon tapped my foot under the table. This was where we hoped she would set the transplant date—preferably now.
The Chicken Who Saved Us Page 13