My dad stood, unfolded his long legs from the low-slung bench and grabbed me in a bear hug. “We love you, Kris. We worry about you and Jon like you worry about Andrew and Hannah,” he said.
“I’m fine,” I lied.
“Well, just the same. I’m here to tell you it never goes away. Your kids will always be your kids.”
He ruffled my hair into a miniature rat’s nest like he had done since I was a little girl. I smoothed it out and turned to my mom to say goodbye.
“Merry Christmas, love,” she said, leaning in to kiss my cheek. Then, in a moment of heartfelt affection, she reached around my shoulders and drew me into a tight embrace. A moment later, the door clicked shut.
The room became eerily quiet except for the noisy breathing of our drugged child and the incessant whir of the IV pump. Even the constant movement outside our door had all but disappeared. It felt like we were the only people in the world.
Jon and I squeezed together on the twin-sized bed under the window. It was going to be a brutally long night. Moose eyed me with his one good eye. “I’m trapped, too.” The HEPA filter turned on causing one of the snowflakes to break free from its tape and begin jumping around the windowsill.
“We didn’t send out any Christmas cards this year, did we?” Jon asked.
“Are you kidding? What would we possibly say?”
“Well… how about, ‘Life really sucks for us, but we hope you are having a Happy Holiday!’”
I snorted, catching myself before waking Andrew.
“Or better yet,” Jon added, cackling at his absurd cards, “The Adams’ have gone to the dark side. Not sure if we’ll be coming back. Merry Freaking Christmas.”
This time, a snort escaped my lips. Jon, laughing, clamped a hand over my mouth. Our imaginary holiday cards were the perfect way to express the insane predicament we were in. The more obnoxious they became, the more we laughed, allowing us both a much-needed sense of relief.
By the time sunlight broke through the edges of the shade on Christmas morning, Jon and I were twisted up on the narrow bed like two pretzels.
“I wish we had a chiropractor in the family,” Jon groaned.
I watched while he stretched his back on the only open area of floor big enough to accommodate his six-foot frame. He was headed to his parents’ house to get Hannah, then home to pick up our dog Sawyer, for a surprise visit to the hospital.
He leaned forward to kiss me on the forehead. “We should be back in a couple of hours. I’ll call when we’re close so you can bring Andrew down to the side doors in the lobby.”
I forced a tired smile. Andrew was restless, but still asleep, so I took the opportunity to go to the cafeteria for coffee and anything else I might find palatable. IV poles and abandoned wheelchairs cast long shadows in the empty hallways, and I suspected that every doctor, specialist, and patient that could possibly vacate the premises was long gone. Although it was the middle of the usual breakfast hour, the cafeteria was nearly empty.
Plunking down my coffee, a banana and some yogurt at the cashier station, I searched for the credit card I had stashed in my shirt pocket.
“It’s all free today, honey. Merry Christmas!” chimed the cashier.
Unbelieving, I looked around and saw a few other parents milling around with surprised looks on their faces. They had been told the same thing.
“Thank you,” I said, completely overwhelmed by that simple gesture of kindness. I found a quiet place to sit and ate my Christmas breakfast alone.
Two hours later Jon called from the road. “We’re about ten minutes away. How is Andrew?”
“About the same.”
“Hopefully, the surprise will be a good thing. I’m not sure what to expect,” he said.
I watched Andrew stare at the wall, unblinking. Unless one of the doctors probed him for answers, he had rarely spoken during the last week. I feared we had lost our quirky boy with the obsessive talk of dinosaurs and chickens to a dark place we couldn’t reach. Where was the kid who watched the 2008 Daytona dirt bike race on YouTube over and over? The carnivore who would eat meat every day if I let him? He had crawled inside of himself and, somehow, I knew he wouldn’t be coming back for a very long time.
“I don’t know what to expect, either. But regardless, I’ll be downstairs in five minutes.”
I bent down to pick up Stuffed Frightful who had been kicked to the floor. I smoothed the fur back from its face and looked into its glassy eyes. They were nothing like the yellow eyes of our living raptor-girl, Frightful. Her eyes seemed to possess some understanding of things unseen, and in that moment, I missed her dearly.
Andrew and I made our way to the lobby and waited in the alcove between the two sets of doors. Each time they opened and closed again, the familiar scent of evergreen blew in, reminding me of the holiday we were missing. To protect Andrew from the crisp air outside, I had wrapped him from head to toe in his SpongeBob comforter. Inside, I tucked Stuffed Frightful into the space between his legs. I wondered what he thought about our excursion, but Andrew never asked me why we were there.
Minutes later, our Christmas celebration pulled in the drive. All four grandparents were in one car, and Jon, Hannah, and Sawyer in the other. When his grandparents came through the doors and gave him consecutive hugs, I saw Andrew flinch with the emotion he had filed away. But the sight of Hannah emerging through the side door of the van with our dog Sawyer made Andrew cry.
Hannah reached past Sawyer, handing me a brown paper lunch sack. On one side was a felt marker drawing of a Christmas tree, hasty blue circles tipped the branches. The words, “From Frightful,” were scrawled across the back.
“For Andrew,” Hannah said when I made a move towards her.
Andrew became increasingly restless in the chair and I glanced at Jon, afraid we would have to abort our mission. From past experience, I knew we had a few short minutes before he became overwhelmed, and a good thing turned bad. Jon quickly enlisted the front security guard to take a photo of our family gathering. There was no posing, no time to prepare a staged smile. At the last moment before the camera clicked, Sawyer jumped into Andrew’s lap and a huge smile spread across his face. The picture was taken, then the moment was gone. It was our Christmas gift.
Andrew fell back into a drugged sleep the moment we wheeled back into the room. Jon would not be back until evening, so I stretched out on the cot and opened the bag from Hannah. Inside was an unappealing wad of toilet paper as big as a grapefruit. I couldn’t imagine what she had put in there. I unwound the ball of white cottony paper with a shiver of anticipation—like a Christmas surprise. The moment my fingers gripped around a hard ball, I knew what she had done. The last piece of paper broke away, revealing Frightful’s gift. An egg. Powdery blue, like the Parisian sky in my pastel drawing. Its velvety shell warmed to my body as I cradled it in my hands. The promise of life yet to come, I thought. A feeling of hope and a deep sense of gratitude overwhelmed me as I thought of Hannah and Jon, our family, our friends, doctors and nurses—and most of all, the bird that loved my son.
I peeled the covers off Andrew and searched for his hand. In it I placed the warm egg, folding his fingers around it like my mom had done with the Shadow action figure. He opened his eyes and smiled.
“I knew she wouldn’t forget me.”
Chapter 20
I chucked the Christmas tree into the garbage two days after Christmas. Done. It was a holiday I wanted to forget. Hannah and I spent the morning packing up ornaments and cleaning the house, and we were both ready for a break. The morning was crisp and sunny, so we bundled in our winter jackets and walked the dogs through the neighborhood.
“What do you think of coming to the hospital with me this afternoon?” I asked.
I was met by a withering look. “Mom, I don’t think so. I really don’t like to see my brother like that. It scares me,” she replied without looking at me.
I took her hand and we walked in silence for a few minutes. I felt th
e same way. My heart wrenched each time I saw my son’s skeletal body curled under the sheets.
“It scares me, too,” I said, squeezing her hand.
Ignorant of our conversation, both dogs happily led us on our familiar walk through the adjoining neighborhood and park. The swings were empty but for a silver coating of frost. There was no more mention of a visit. Instead, I cherished the time with my daughter watching the dogs play in the crackling leaves that had been tossed by the wind into a lacy pattern at the edge of the grass. I closed my eyes, inhaled deeply, and took a snapshot of the moment in my mind. I wanted to remember this feeling of bliss. I knew I would need it in the weeks to come.
Arriving at the hospital that afternoon, I found a handwritten note on the tray next to Andrew’s bed informing us that the action items from our last meeting in mid-December had not yet been addressed. We would have to wait until after the New Year’s holiday before any of them would be worked on.
“Happy Holidays!” it read in a curlicue scrawl at the bottom of the page.
I snapped. Good Lord! Is this a joke!? I stalked into the hall looking for someone to kill.
We’d been waiting weeks for the team to determine whether or not Andrew could survive a transplant, not to mention that our insurance company had yet to approve the million-dollar endeavor. Once those two items were taken care of, the doctors had to determine a protocol—a select grouping of medications they hoped would eradicate the diseased cells in his bone marrow before the transplant could be done.
“We don’t understand the etiology of his disease, and we have never encountered cells that look quite like these,” they told us more than once.
Sometimes, as I sat there listening to their rationalizations, I felt again like we had been exiled from the land of ordinary people to a land of misfits. So far, no one had been willing to put their neck on the line. Nobody wanted us, we were a hot potato, uncomfortable to hold, and frankly, unappetizing.
I stomped down the hallway only to find the nurses station quiet and empty. At the elevators, I ran into one of the interns currently working with Andrew. “Do you know who left this letter for us?” I growled.
“Can I see it please?” she said gently, afraid I might bite.
I handed her the note. What could she do about it? She was just an intern, rotating through, gone in a couple of weeks.
She quickly scanned the letter and handed it back to me. “I will try and find out for you, Mrs. Adams,” she said sweetly, “Why don’t you wait in your room…”
“Nope. I’ll wait right here!” I cut her off.
Anger bubbled up from my gut as I went into super-bitch mode. I can play this game, too! I smiled at her with just a glint of rabid-mother in my eyes.
Pointing to a door that read STAFF ONLY, I grabbed the nearest chair, positioned it in front of the door and sat down. She quickly disappeared into the mysterious place beyond the sign. I slumped in my chair, suddenly exhausted. I was tired of being nice. And compliant. And a pleasant parent. This was my son’s life we were wagering, and I was done waiting for our file to rise to the top of someone’s in-box.
By the time a more senior doctor came back through the door, I had made a few decisions. I played my next words like a coveted poker hand. “I was thinking. Does the hospital have an Ombudsman? Or what about a patient advocate? Are they kind of like a lawyer?”
The slightest widening of his eyes let me know I had hit my mark. “Let’s chat in here, shall we?” he said gently as we walked in to an empty conference room.
He asked me to repeat my decade-long story again, and I lost my bravado. “I am too tired for this,” I said through my tears, “I need someone to help me. RIGHT. NOW. Someone who can make things happen. I’m not sitting through another conference. We need to make a decision.”
He looked at me, hard, perhaps to determine how desperate I was. “Wait here,” he said, skipping back into the hall.
Where would I go? I was just as stuck as Moose. He returned with a pencil and notepad, scratching the name and number of the hospital administrator onto the small slip of paper. “Maybe he can help?” he said, handing it to me.
Five minutes later, I exited the elevator on the fifth floor. I felt a glimmer of hope as I slowly read the numerals on each passing door. At the far corner of the hallway, I found the office. It was hardly more than a refurbished coat closet with a slim vertical window cut into the door. The room was just big enough for a desk, computer, and a few file cabinets. His door was ajar and I was able to poke my head in and introduce myself. He was not at all surprised to see me. It was clear he had been notified by the doctor downstairs.
David Archer was somewhere in his mid-sixties with a full head of silvery hair, a wide smile, and a kind face that immediately put me at ease. The cup of coffee on his desk left a comforting and familiar aroma that further melted my anger.
Reaching into his bottom drawer, he pulled out a box of Red Vines and handed them to me. “Would you like a couple? I find they help me think.”
Incredulous, I helped myself to two licorice pieces and handed the box back to him.
“I’m just going to pull up your son’s chart here, and I want you to give me the highlights. Then I want you to tell me about today, and I will see where I can help.”
We talked for over an hour, me telling him about our reluctant team of doctors and the fact that our insurance company was still not on board. When I had finished my story, the coffee cup was empty, and the Red Vine box had a measly three ropes left.
For the next week, it was quiet. Then one morning, I heard the words we had been praying for since Dr. Torgerson discovered the problem with Andrew’s cytokines: “The transplant has been approved.”
I was shocked. Our assorted group of doctors, specialists, and nurses formed a semi-circle surrounding Andrew’s bed during rounds—some familiar, some new. I searched each face looking for some clue to their private thoughts and noticed David Archer in the doorway, smiling in my direction. I knew he had been our champion—the one who set fire under each of the players who were reluctant to sign their names to such a complex medical endeavor. Thank you, God. I felt a heavy burden lift from my shoulders. It was quickly replaced by, what in the hell have we done?
With a compelling letter from Dr. Torgerson explaining Andrew’s irreversible mutated marrow cells, our insurance company had agreed to the transplant. And with that, we were immediately transferred over to the SCCA (Seattle Cancer Care Alliance) unit within Children’s Hospital. It went unnoticed to the casual observer, but to us it was a monumental shift. That morning, we were introduced to an entirely new team of doctors who immediately started Andrew on an aggressive pain regimen. They flooded his system with a cocktail of narcotics, anti-emetics, and frequent doses of Benadryl. He swallowed carefully compounded doses of Magic Mouthwash—an oral rinse heavily laced with liquid lidocaine. For the first time, he had some temporary relief from his mouth and esophageal ulcers.
On the heels of our new medical team, a brisk rap on the door was followed by two purposeful women. They walked straight into the room and introduced themselves as our palliative care team. Just as the medical team had done not thirty minutes before, they took charge of the situation.
“I am Karen, and this is my co-worker, Elizabeth.”
They reminded me of the women in my kids’ playgroups—approachable, understanding, and with an air of humility that comes from being a mother.
“We have read Andrew’s chart and have spoken at length with his doctors. You’re exhausted. We can see that. We’re here for you. They will take care of Andrew,” Karen said, waving at the team of doctors congregating in the hallway.
I stared at her with my mouth draped open. I had been on the losing side of a medical battle for so long that I couldn’t think of a single thing to say. This was the first time someone had taken care of me. My hands started to shake as I clutched them in my lap.
“What am I supposed to do? I’m hardly qualifi
ed to make all of these decisions.” I pointed at the stack of papers in my lap. “What if we make the wrong decision and lose our son? How can a person live with that?”
My body started to shake from inside and my breath came out in a fearful gasp—the very same feeling I had in the emergency room the night I told the nurse my son was dying.
I looked at both of them, hoping they would tell me what to do. Instead, Elizabeth told me her story. Ten years earlier, she had been a mother watching her child go through a transplant. The pounding in my chest slowed as her words filtered through my ears and wove their way slowly to my overtired heart. Just the knowledge that someone knew what I felt like was a balm to my soul.
Elizabeth moved to the seat next to me and wrapped my hands in hers. “There are no guarantees, but I can promise you that we will be here on the other side...whatever that might look like.”
I shivered at the thought. We had just stepped out of Jon’s metaphorical boat into the rushing river. I had no idea where we would end up.
Taking charge of the conversation, Karen pulled a small notebook from her purse. “Who can you trust with Andrew? Who is he most comfortable with?”
Julie. I told them about my best friend, how I hated that she lived so far away in Arizona.
“Let’s call her,” Karen said, handing me her phone. “You need her right now.”
Without hesitation, Julie booked an open-ended flight from Phoenix. She would arrive in two days, right before Andrew’s scheduled surgery to place a Hickman Line (central line) into his chest. The plan, I learned that morning, was to be ready for transplant by the first week in February. I made quick calculations in my head. In conjunction with the preparatory medications for transplant, and TPN (intravenous nutrition), it would give us only three weeks to build up his reserves.
“Now, you need someone who can manage your daily life from here. Who would that be?” Karen sat with pen poised above paper.
The Chicken Who Saved Us Page 16