Wednesday, October 19, 2011

Beyond Chapter 1

It's Oct 20, 2011 and as always we are missing Grace. We have learned so much from all of it, we have grown in some ways and been broken in others. It has been two years this day since Grace was diagnosed with Wilm's tumor, a pediatric cancer. Two years since our lives were suddenly flipped upside down into a reality that will forever change us. I told you I wanted to write a book. This is a rough draft for chapter one. I want you to see why today is a tough one to remember, but to move through the pain first you have to find the courage to face it.

Oct 20, 2009

We’d been waiting after the CT scan for well over an hour in the dimly lit radiology reception area. Every other patient had long since left. My daughter, an 8 year old, had missed supper and was hungry and even more frustrated at our long wait. I was getting anxious. The doctor was supposed to have called us there with results an hour ago, so I was surprised to see him appear around the corner in person. I greeted him with a quick smile, then felt a sudden flash of heat spread up and down from my core as I met his eyes. My heart skipped as I felt my chest tighten and my stomach lurch. In that one glance I knew the news would be devastating.

She was sitting on my lap as I forced a “Hi” passed the bolder that had suddenly appeared in my throat. He didn’t bother with pleasantries and for this I was grateful. Kindly he met my gaze. “Annette, we need to talk.” To my daughter, with a smile he said, “Malia, can you wait here for a few minutes, Sweetheart?”

Already my brain was screaming in protest. I did not want to hear what he had to say. I did not want to go through another trauma in life. I did not want her to be in the center of this news. I wanted to take her and run. Fast and far. To escape this moment and leave it disappearing like a shadow in a lighted room. Instead, the voice I spoke with was calm and clear. “OK. Wait here, honey. I’ll be back in a few minutes.”

My legs felt disproportionate to my body as I started to move. It took great effort to transfer Malia off my lap and onto the seat next to me and to make my feet follow the directions my brain gave them to move. She had cried when the IV was placed into her hand for the scan and as I glanced back at her I could see her cradling that hand, IV still in place, close. I silently followed the doctor into a private room while feeling my body beginning to tremor against my will. My heart was pleading with God as we sat down together in a room just big enough for the 2 chairs and a garbage can. The doctor shut the door then sat quietly, trying to gather his thoughts. I suddenly felt as if someone else was sitting in my place, preparing to get this news. I wondered how many people had gotten bad news in this room. Would I know what to say when he told me? Would I scream? How far down the hall would they hear me? Would I scare Malia out in the waiting room with my reaction? No. I resolved to hold it together. The doctors sigh broke off my run on thoughts. It was time.

“It’s not anything we expected to find.” (pause) “I don’t know how to...” (another pause, then sigh).

My thoughts were racing. “Oh, God, please, no. Please.”

Then slowly, “Annette, she has a large mass in her kidney.” As a nurse I know the word mass can mean several things. It’s used until a definitive diagnosis can be made. Sometimes it’s cancer, but she’s only 8. There’s never been any childhood cancer in our families. What else does “mass” sometimes mean? My brain is sluggish. I can’t get it to work. Abscesses, cysts....

“There are also spots in her lungs.” Brain frozen. Black spots on the walls. I realize I am looking at the trash can wondering how soon I will need to use it. My brain starts to work again against my will. Mass... Spots... CANCER! METASTASIZED CANCER!! My head spins. The silence in the room is louder than any sound I have ever heard. Oh, God. Oh, God. A thousand questions bombard my thoughts. There are exclamations, groans and screams in my head, but my mouth stays silent, and no thought is actually completed. They tumble and fall, bouncing around inside my skull without finding a place to land.

“I’m so sorry.” It was all that was left to say.

It feels like forever before my mind finds a statement it can form and reliably speak out loud. “Now what do we do?”

“I’ve already spoken to the oncologist on call at Children’s. She said you can come tonight if you want to and they can do some preliminary lab work and get some baseline data collected, or you can go home and take her there in the morning.”

Oncologist? Oh, God. She’s always been so healthy; so strong. This can’t be real. Despite my racing, disjointed thoughts, I continue to sound calm and rational. “I want to go tonight.” We discuss which campus to go to, and what floor. I used to work at the Minneapolis campus, know my way there, and even know where the “cancer kids” stay. It was never a place I dreamed I would be heading to with my own child, but that was exactly where we would be going.

Back out in the waiting room, I see my girl curled up alone in a big chair in the near dark against a wall. She looks so little and defenseless; a stark contrast to the way I usually think of her. I bite the inside of my lip to keep my composure as I offer her a small smile.

“What’s wrong, Mama?” She’s not so little after all. She knows this is bad.

Talking to myself I say, “Be strong. You don’t know much yet. Maybe they can fix this. Maybe she’ll be fine. Keep it together.” Into the wide eyes of my baby girl I say, “The doctor saw something on your test we need to know more about. We’re going to go to the hospital where mommy used to work. They have special doctors who know more about this kind of thing.”

It was already getting late. “Do we have to sleep overnight there?”

“Yes, baby.”

“Awwwww.” She said in her best whining voice, “Well, can I at least eat something first? I’m staaarrrrving!”

Surprising myself, I laughed a little. It occurred to me that in that moment she was not a “patient”, she was my daughter. And my kid was hungry. “Yep, we can eat first.”

Finding the cafeteria was no chore. I’m an OB/ Pediatric nurse at this community hospital. I know the menu, the kitchen staff and the route from the cafeteria to my 4th floor unit well enough to get there blind. We go through the line and she gets a grilled cheese sandwich... her favorite! She’s pleased as punch. I’m a diabetic and should eat, but am something beyond nauseous so I just get a sprite.

A couple times a year all of the nursing staff on our unit have to go through additional training sessions. I was supposed to have taught one of those classes that evening, but in glancing at the clock I realized my co-worker had to punt for me. I’d missed it. The class would be letting out at any minute.

As always Malia wanted to push the elevator button and grinned as it zipped up to the 4th floor. We had traveled this elevator a hundred times together coming to visit babies or pick up something I needed for work. But today was different. I realized with sudden clarity that nothing that was normal would ever be normal again. I set Malia up with her food in our break room and excused myself to the bathroom. I needed to pee, and throw up, and maybe be hysterical. This cannot be happening. I left Malia and rounding the corner saw a sea of my co-workers (my friends and fellow nurses) heading down the hall towards me. My bladder would have to wait.

Allison was the first to reach me. “Hey! What did they find?” They had all seen us before the scan when I had explained I would be late to class due to the CT. I had told them about her fall off the monkey bars at school a couple weeks before and about the low grade fevers the last couple days. Despite the occasional report of pain in her left side, she had been going to school all week, running and riding her bike around the neighborhood, climbing trees, eating well and just being her usual active self. The doctor had seen her at the clinic that afternoon and because of her recent history of falling, wanted to see if she maybe had a slow internal bleed causing her worsening pain.

My reply to Allison’s question was more direct than the doctors description. He used the words mass, spots, oncologist... I said simply, “She has cancer.”, feeling the burn of tears filling my protesting eyes. Allison pulled me into a startled hug as others gathered around me. I only allowed myself a few tears. I had to be strong. Malia still had to get to the Children’s hospital, and I didn’t want to alarm her. I told them the little I knew. “What can we do?” I didn’t know. I couldn’t think. I just asked them to pray, especially for Malia and for my husband who I knew would have an especially difficult time dealing with this news. Right then and there they laid hands on me, bowed their heads and prayed out loud. An unexpected gathering of support and prayer in a public setting. Exactly what I needed, precisely when I needed it. A first glimpse into the astounding ways God surrounded us throughout the journey to come.

A few more tears and 10 hugs later, it occurred to me that I had to tell my husband, Joe. He was at home with our other two daughters, ages 6 and 1, waiting to hear from me. I sat down at the phone staring blankly at the numbers. I started to dial and hung up. Again. Again. The number I finally finished dialing was my moms. “Hi, Mom. Malia just had a CT scan and she has a tumor in her kidney and there are spots in her lungs. I’m taking her to the oncology floor at Children’s tonight. I haven’t told Joe yet. I don’t know how he is going to take this news and I need you or dad to go tell him in person. I don’t know what to do with the girls”

Even as I said it I knew it was all wrong. This is not a conversation I should be having. I should be able to soften the blow for my mom somehow, but how do you say this gently, without causing internal bleeding to the one’s who love her? I knew it was unfair to give mom such an awful responsibility, to have to be the bearer of such bad news. I just couldn’t tell Joe on the phone. I needed to know someone would be there to hold him when he fell apart. I needed to be with Malia. I didn’t know what else to do.

Allison drove with us to Children’s. It was dark and cool, but not cold. I shook anyway. I felt disconnected and dreamlike on the drive. I kept glancing back at her sitting alone in the backseat looking out the window. Wondering desperately what was going through her head. Afraid to ask. The radio was playing, and Allison and I tried to make light conversation. The city lights were brilliant in the darkness as we approached Minneapolis. My stomach hurt, my head was pounding, my mind was racing, but I was still unable to complete a single thought. Oh, God, help us.

Arriving at the hospital, Malia was unusually quiet. Typically boisterous and headstrong, she was holding my hand and leaning her small frame into my side as we walked down the long colorful hallway toward the admitting desk. Malia pushed the button for 8 and we were met by a sign welcoming us to the oncology/ hematology floor. Another wave of heat ran up from my core. I bit my lip and fought back tears. We were escorted to a room at the end of the hall. Small children with pale faces and darkened eyes peered out at us from white hospital beds. Their bald heads announcing their sentence to serve in this battle they did not sign up for. Their parents holding vigil by their sides. I looked at Malia walking beside me feeling a new wave of nausea. Her brown hair was beautiful. She was already thin. How did we get here? Please, God.

Over the next hours kind nurses and a gentle doctor checked vitals, drew labs, took a medical history and did an exam. They started some IV fluids for her and then found me some Tums and Ibuprofen from their own purses. We wouldn’t know anything definitive for a couple days. They would do more tests in the morning. An echocardiogram, another CT, more labs, and kidney function tests. A biopsy would likely be done in the next couple days and they would put in a port (a central IV line) then we would wait to start treatment until we knew for sure what type of mass she had. The biopsy would be sent to Chicago, to the expert in the field. They would cover all the bases, get her the best possible care. If this is what they thought it was, it usually responded very well to chemotherapy. No one on the medical team said the word cancer for days.

Joe got to the hospital soon after we had arrived and when he walked in the room we exchanged a look of pain that can only be understood by other parents who have lived in this nightmare. He looked better than I expected, strong and supportive. He kissed us, his girls, and settled near Malia saying he loved her.

Malia was so quiet. She agreeably did whatever was asked of her, but focused as intently on the TV as she could while blocking out anything anyone in the room was saying. She was like a horse with blinders on. Sponge Bob was her refuge. She refused to look right or left unless we were intentional about getting her attention to ask a specific question. It was obvious she wanted to run as much as I did. But she sat there with quiet courage and did what she had to do with very few tears. She didn’t ask questions. She fell asleep quickly after we turned down the lights, her breathing becoming deep and regular. Joe and I held each other in the dark, silent tears streaming, trying to each be strong for the other. Both feeling ripped in two. I closed my eyes to try and sleep and would see flashes of her laying in a coffin. I would immediately snap my eyes back open, staring into the dark. Once in awhile I would drift off for a few minutes then would wake finding Joe kneeling by her bed, praying for his little girl. I had no words. I didn’t trust my voice or my thoughts. I tried to shut back off, to sleep. But as I shut my eyes, again she would be in a coffin. Feeling a scream building in my throat I would again force my eyes open to look at her breathing next to me. I would look at her until I no longer could. It was a very long night, and by first light Joe and I were exhausted and left feeling physically sick.

We had no interest in eating breakfast, and no time either. Quickly we were rushing off to do all the tests ordered for the day. Joe went home to sleep a little, to tell his family what was happening and pack me some clothes and other needed things for the hospital stay. At lunch time I checked my purse to see how much money I had to eat on. There was about 3 dollars if I counted the loose change in the bottom. Panic started to set in as I realized for the first time not just how life threatening my daughter’s illness was, but also the huge implications that illness would mean to every other part of our lives. Financially this would be devastating. Medical bills, parking fees, co-pays, gas, meals away from home, childcare for our other kids, and on and on. As it was we weren’t making it from one paycheck to another. There was no money in the bank. I tried to pray, but it was hard to even breathe. What were we going to do? I wondered if I could wait to eat until supper, but checked my blood sugar and realized I had no choice in waiting. I ran down to buy a sandwich and was able to eat about half before having to make a bathroom run to throw it back up. As a diabetic, this was going to be a difficult ride.

After getting back to Malia’s room the phone rang. It was an old friend of my family’s that I hadn’t seen in years. Dan and Toni had heard of the diagnosis that morning through a prayer chain. Dan explained that he was supposed to teach a class that day, but it had been canceled since not enough people had signed up to attend. He got paid either way, and since he wasn’t actually teaching wanted to give us the money. He asked if I could meet him at the front entrance to the hospital that afternoon. I hugged him a couple hours later, holding enough money in my hands to meet our immediate needs for that hospital stay. I wept silently thanking God for his provision and asked for greater faith to trust him along the way.

Two never ending days passed while I did my best to keep Malia distracted from everything around us that was terrifying me. I hung on every word the doctors and nurses said, desperate for information about what was happening. It was killing me having to wait for a plan. Malia watched a lot of TV. We went for walks around the oncology floor, but she remained very quiet and reserved. There was a child across the hall on comfort cares. No one ever told us that, but I used to be a hospice nurse and the signs were obvious. The family looked as wrung out as I did shell shocked. Their tears told their story of heartache even if their english could not.

The night before Malia’s biopsy I kneeled at her bedside like always to pray with her before she went to sleep. I was so tired, so overwhelmed, and so scared. I didn’t know what to pray. “Dear, Jesus. (pause) God, we need you. (I started to cry while trying desperately to hide it).” I peek at Malia who is peeking at me. She rolls her eyes at me dramatically and says “Mooommmm!” as if she can’t believe I’m losing it. It made me laugh and I quickly finished the prayer, tucking her in, kissing her cheek and saying goodnight. I watched her fall asleep in the blue hue light of her IV pump. But sleep did not come for me that night. The next day they would cut her open looking for answers to try and save her. I had seen her CT scan that day. Popcorn white spots covered her lungs and a massive part of her left side was blanketed white. I knew if I closed my eyes the coffin would loom.

I laid back on the hard cold cot and stared at the ceiling listening to distant alarms, beeping IV’s and crying infants and couldn’t help questioning what God was doing and if any of us would survive.

Chapter one only tells a day in the life of cancer, only a glimps into the ways we've been changed through Grace and her life. In the end God is still faithful, and He has not abandoned us in our pain or our loss. As we learn I will write and hopefully bring hope to others struggling on the road of life. Thank you for your prayers.