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 the 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 qualified 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.

I couldn’t think of a single friend who would be willing or able to take on such a task. Or was it that I was too afraid to ask? I felt I had used up my lifetime allotment of favors, creating a friendship deficit that left me owing others more than I could possibly repay.

But with Karen’s encouragement, a couple of days later, I called my friend Anne and invited her over. I sat on the sofa, nervy at the thought of what I was going to ask her. She walked into my home, sat down, and eyeballed me. I could see her taking in every aspect of the room. There were pairs of dirty socks and shoes clustered at the foot of the couch where we stripped them off at night, a stack of magazines, and unopened mail used as makeshift coasters for used coffee cups. A half-eaten box of Frosted Mini Wheats sat on its side, and the cat had made a nest in the laundry basket next to me. Anne noticed all this without taking her eyes off me. I felt exposed. My house was always immaculate and picked up every morning before I started my day. Now, here I was sitting in a pile of debris and I hadn’t the energy to move. I stared back at her, a nervous smile creeping onto my face at the absurdity of it all.

“What can I do?” she asked with a genuine tone of concern.

I swallowed hard, trying to find the right words. I hadn’t seen her in months and couldn’t think of where to begin explaining my life. I started with the list of jobs I was sent away with after meeting with the palliative care team at the hospital.

“So… you are the first person I thought of,” I said with my heart galloping around in my chest. Please say yes. The truth was that she was the only person I could think of who could do the job. Anne is the most organized, get-it-done person I know. I had known her since our boys were in the first grade together, and even then I knew she was a force that made my Type-A tendencies look like mere laziness. I lost my bravado quickly when she didn’t reply immediately. “I need help. My world is falling apart.”

She leaned over, a kind look of concern on her face, and took the yellow paper from my hand. She quickly glanced through my notes as she fumbled for a pen in her purse.

“This is no problem. Let’s start right now. Do you have a list of contacts you can print out for me from your address book?”

I let out an audible sigh. For the first time in months, I felt like I could breathe, like we just might make it, and maybe, just maybe, we would come out the other side in one piece. Anne spent the afternoon going over a list of people who could help us. She divided them into people locally, out of town, neighbors, family, friends, and church members. We wrote a select list of people who might be willing to spend the night at the hospital with Andrew, and people who could take care of Hannah.

“Do you know how to start a blog?” she asked.

I shook my head.

“Let’s set one up now. Then I want you to invite everyone on your contact list. You can keep people updated medically, and I will be in touch with people who can help. That way, you won’t be so overwhelmed with phone calls and emails. Keep things simple, focus on your family, and let me take care of the everyday things.”

Again, I let out an audible sigh.

“But what do you think anyone can do?” I asked, as she was packing to leave. “If I see another casserole, I might barf.”

She raised an arm in the air, “Leave it to me. This woman has mad plans!”

I returned to the hospital to hear my mom talking with Andrew.

“I’m not gonna do any more surgeries,” Andrew told her.

The doctor had recently explained the purpose of a Hickman line, and the procedure that would entail. Andrew had paled when he heard he would have two long lines hanging outside his chest near his heart, one for medications, the other for blood draws and infusions.

Feigning interest in an outdated People magazine, my mom casually said, “You know, that sounds exactly like what Iron Man did. He was out of energy and he needed superhuman strength to get his job done.” She flipped the page, scanning the best- and worst-dressed Hollywood starlets while Andrew chewed on this new information. “Seems to me that this new wiring will help you get your superpowers back, Andrew.”

“Does this mean I can fly?” he asked.

“Maybe. I really don’t see any limits to the possibilities.”

He pulled Stuffed Frightful from somewhere under the bed sheets and whispered in her ear. The two of them came to the conclusion that this was a very good idea.