Fly a Little Higher

by Laura Sobiech

  As the nurse pulled up some images on the computer screen, the doctor asked Zach how he was feeling, to which Zach replied that he was feeling great. After he brought me up to speed on Zach’s current blood count numbers, he took a seat and turned the computer screen toward us.

  “We have some disappointing news,” he said with a sigh as he looked at Zach. “The CT scan we did this morning shows three new lesions on your lungs.” He paused a moment to let the news sink in.

  My mind was reeling. What were they? Where did they come from? And why was the doctor making it sound like a big deal? I knew that osteosarcoma liked to go to the lungs, but Zach had beaten it. His tumor was dead. The chemo had worked.

  “What are they?” I asked, puzzled.

  “We won’t know until we take them out.”

  “What do you mean, ‘take them out’?”

  “We’ll have to do a surgery called a thoracotomy on each lung and do a wedge resection to remove the spots. We won’t know for certain what the lesions are until they are taken out by a surgeon,” he explained. “At this point we shouldn’t waste too much time worrying.”

  My mind was tumbling all over the place as the future I had just barely allowed myself to consider was being tossed like a chess board that’s been flung off a table. We were supposed to be done with this thing; we’d done our time.

  “Can’t we just keep an eye on them for a while? Is the surgery absolutely necessary?” I pleaded. This poor kid had just started to feel somewhat normal again and he’d had a major surgery five months earlier.

  Zach was calm and didn’t betray any emotion, more thoughtful than stoic. He was the one who would be affected the most, yet he didn’t seem rattled at all. Quite the opposite, he was serene.

  “I’m afraid so. Given Zach’s history of disease, it would be too risky to delay. We really need to know what we are dealing with and, like I said, the only way to do that is to go in after it and take it out. But there is a good chance it’s just scar tissue from a previous infection,” he said patiently. This wasn’t the first time he’d had to explain this to a parent.

  “Okay. When?” If cancer was going to crash into our world again, I needed to start picking up the pieces of life and arrange them back on the board. The wedding was weeks away and school wasn’t far behind, and I wanted Zach to be able to do both.

  “We’ve scheduled a consultation with the pediatric surgeon for next week.” He handed me a card with the information written on it. “You can expect the surgery to be scheduled within the next week or two.”

  “What about the study?” I asked. “When do we start?”

  “We’ll have to wait and see what the lesions are. If they are in fact osteosarcoma, Zach would no longer qualify for the study. It’s for non-recurrent patients,” he said in an apologetic tone.

  Later that afternoon, I called Rob to tell him the news.

  “That’s not good,” Rob said more to himself than to me. Rob had always been a worst-case-scenario kind of guy. It was how he prepared himself for bad news. I was more of a stay-upbeat-and-positive kind of gal.

  “It doesn’t mean the cancer is back. It could be something else.” I wasn’t ready to go there.

  “Have you told the kids yet?” he asked.

  I hadn’t. It was the part I really hated—watching their lives dumped again with no reassurance to offer them. It was so hard to leave that world where everything turns out fine for that other world where kids actually get sick and some of them die.

  “Zach is going out with friends, so let’s talk to Alli and Sam tonight after dinner. Maybe we should wait until we know for sure if it’s cancer before we tell Grace,” I replied. I wanted desperately to shelter Grace. She was a child, just eleven years old, and I wanted to protect her from the agony of waiting for bad news and the harsh reality of Zach’s disease. And I was still hopeful that it could be something other than cancer.

  After dinner Sam went out to cut the lawn, and Grace settled in to watch some television. We pulled Alli into our bedroom first to give her the news, and as we were talking, Grace walked by the partially open door on her way to her bedroom. She heard Alli start to cry as the news that the lesions could be cancer began to sink in. I looked out into the hall just in time to see Grace make a beeline for her bedroom, tears forcing their way from her eyes despite her obvious effort to stop them. I hadn’t seen her cry about the cancer before this; she kept things tucked away pretty tight. I was shaken and heartbroken as I stepped out of the room to catch her and pull her into my arms.

  “Did you hear what we were talking about?” I held her shoulders and pulled back a little to look at her. Sadness mingled with fear swam in her eyes.

  “No. I just heard Alli start to cry, and I figured something bad was happening again.”

  “Come on. I think you need to hear what is going on.” With my arm wrapped around her shoulder, I guided her into the room with Alli and Rob. Alli put her arm around Grace and pulled her into a hug as Rob and I proceeded to tell Grace everything we had already told Alli: there were new lesions on Zach’s lungs, and he would need surgery to determine what the tumors were. It was difficult telling my little girl, but she needed to hear it all, just like the rest of us. I couldn’t shelter her anymore. I could only be there to help pick up the pieces after they fell.

  I watched Grace, this strong, confident girl, let the wall come down and the tears flow freely. I felt my own tears fight their way out. Like a good midwestern German, I’d hidden that part of myself from the children. A parent’s tears seemed too much a burden to place on a child. But as the four of us stood there, huddled together in our little group, it became evident that by sparing them my tears I was asking them to spare me theirs. I finally let the tears go. Rob pulled the girls and me into a big group hug and for a few moments we all just sobbed.

  Until Daisy bounded in and caught her reflection in the full-length mirror.

  At four months old, she was still a little baffled by the other puppy in the house—the one who would show up periodically in the mirror and stare boldly back at her, even after she displayed her very best pouncing stance and her fiercest bark.

  As Daisy’s little tiff with the puppy in the mirror played out, we all turned and regarded her for a moment, then looked at one another and erupted into laughter as we wiped the tears from our faces. The tension and sadness shifted so easily into torrents of laughter. And I realized what a blessing this little beast was.

  Ten

  A FEW DAYS AFTER WE’D GOTTEN THE NEWS THERE WERE NEW lesions in Zach’s lungs, we met with the pediatric surgeon. I was still a little annoyed Zach would have to go through another surgery. It seemed like such an extreme way to proceed.

  “Do you have any questions, Zach?” he asked gently after examining Zach.

  Zach shrugged and looked across the room at me. I could tell he didn’t really know what to ask; he was just going with the flow.

  “Do you want to know how the procedure is done?” I asked Zach.

  “Yeah. Sure.” He looked at the doctor.

  “We make an incision about ten inches long between the ribs and then use a rib spreader to pull the ribs apart,” he answered in a mild and matter-of-fact tone. “Once the ribs are spread apart, I will go in with my hands and feel the whole lung. Osteosarcoma feels like a piece of sand. It’s very obvious. If we find anything suspicious, we will do a wedge resection and cut that part of the lung out.”

  I glanced at Zach as he listened intently from the exam table. He caught my glance and smirked at me, one eyebrow cocked. This guy sure wasn’t pulling any punches! Initially I was shocked at his frank language. But once I got over the “rib spreader” part, I appreciated his candor. Zach deserved to know what he was in for; he needed to be prepared for it.

  “Zach, do you have any questions?” the doctor asked as he pulled a business card out of a drawer and handed it to me.

  “Nope. I’m good.” Zach sat on the table and leaned back, his hand p
lanted firmly behind him as he casually tapped his foot on the slide-out step.

  “Okay. Well, we’ll see you a week from today, next Friday.” He indicated the date and time written on the back of the card he’d given me. “Do you have any big plans this weekend?”

  “Yeah. We are going to a cabin up in Wisconsin with my mom’s side of the family,” Zach answered.

  “Oh. What do you do up there? Hiking, swimming, boating?”

  “We usually go kayaking, and we do a lot of swimming.”

  “Well, be sure to wear insect repellent. You don’t want to get Lyme disease from wood ticks. And don’t drown,” he said with a sober face as he rose from his chair and showed us to the door.

  “Okay,” Zach chuckled.

  As we walked down the hall, Zach laughed again and said, “He’s like a sadistic Mister Rogers.”

  “Ya think?” I busted out laughing too. “He’s an odd duck, but I kind of like him. He lays it on the line.”

  “Yeah. Me too. I don’t know what it is about him, but I trust the guy,” he said as we walked out the door of the mammoth concrete building that looked more like an oversized castle than a medical facility.

  August 2010

  BEFORE WE LEFT ON OUR CABIN TRIP, I CHECKED MY E-MAILS AND received a notice of a CaringBridge update for one of the children I’d been following for a couple of months. He was a little boy, around nine years old, who was tanned from the summer sun and had a head of dark, patchy hair that had struggled to grow back after chemo. He had been fighting osteosarcoma for a couple of years and was in his last days. The cancer had filled his lungs. A week earlier, Santa visited his home and delivered a surprise Christmas in July to accommodate his wish to have one more Christmas before he died.

  He had died that morning.

  I was heartbroken and devastated for his family. This was the first time it hit home how horrible this disease was. I’d allowed myself to believe that Zach would never have to go through what this little guy was going through because Zach was different—he was beating cancer. But now there were unexplained lesions on Zach’s lungs that I knew in my heart weren’t caused by an infection or a cold. The only explanation was the most obvious one. Cancer was back.

  Denial is such a crazy thing. Sometimes it hinders people from seeing what is real and keeps them in a place they should not be, but sometimes it’s the only thing that allows people to live freely in the midst of terrifying circumstances that would otherwise cripple them.

  I was finally starting to understand the nature of this disease. It was sneaky and greedy, and it didn’t follow any rules. It didn’t care about statistics or formulas, and it certainly didn’t care that Zach was a strong, healthy kid who’d never had anything more than a bad cold. This disease could kill Zach. He could actually die.

  At the cabin, I sat on the porch and allowed the thought of losing Zach to really penetrate my mind. It was the first time I let it go down deep and fill my whole being. My head felt numb, and my chest felt like a hundred-pound rock was resting on it. Breathing required thought and concentration.

  I thought about what it would be like to sit on the porch of that cabin without Zach there. To know he was gone and would never be back. I wondered if home would ever feel like home again and if life would ever feel whole again. Or did losing a child mean that life would always be wrong, like a puzzle without all the pieces?

  It was a strange thing to grieve a son whom I could see building sand castles with his little cousins on the beach in front of me. Images of him emaciated, sick and dying, flooded my mind. It felt like betrayal, like I was somehow giving up by allowing these thoughts to play out in my mind. Grieving the living was a skill that took practice, and this was my clumsy start. I would eventually learn to be pragmatic about it, allowing grief to dwell in a little closet that I tucked back in my mind and only opened the door to at specific times throughout the day, releasing it to run freely.

  Over the next days, I became obsessed with reading CaringBridge posts of families who had battled osteosarcoma and lost. I focused on the stories where the cancer had shown up in the lungs and would follow it through to the end. I wanted to see the pattern and compare it with ours. I wanted to see the future and know what was going to happen. I was tired of surprises.

  It was a horrible week. The stories I read went one of two ways: no cancer in the lungs meant survival, or cancer in the lungs meant a long battle followed by death. It was a grim way to spend time, but I couldn’t stop. I needed to know.

  It was finally Friday: thoracotomy day. We checked in, and Zach was taken to a room to get ready. He always amazed me with how upbeat he was when we checked in for surgery. There were times he was nervous, but he never seemed frightened. We joined him in the pre-op room before they took him to the operating room. The mood was light as we watched Man v. Food on the Travel Channel. The nurses, doctors, and surgeons all came in to introduce themselves and go over the procedure. We walked with Zach to the kissing corner and told him we loved him.

  An hour and a half later, the surgeon found us. “The procedure is done, everything went well, and Zach is being moved to the recovery room,” he reported.

  “Did you find anything?” my mom asked. She and my dad had come to the hospital to keep Rob and me company as we waited.

  “Yes, I found a couple of spots that I removed,” he replied in the same matter-of-fact way he had described the procedure to Zach a week earlier.

  “What do you think it is?” my mom asked, expecting to hear good news.

  I didn’t want to know until the results came in from pathology. I wanted one last weekend to hang on to that last little bit of hope.

  “It felt like osteosarcoma, and given Zach’s history, there is no reason to believe that it isn’t.”

  Our last hopeful weekend was lost. The enemy had returned, and denial wasn’t an option. Life had changed. Again.

  ZACH BARELY MADE IT TO MY SISTER’S WEDDING, JUST FIVE DAYS after his thoracotomy. The day was a mixed bag of joy for the happy couple and worry about Zach’s recovery and his future. Zach had planned to go on a pilgrimage to Madrid, Spain, the following summer for World Youth Day, a huge event where millions of Roman Catholic teens and young adults from around the world gather to celebrate their faith. He had been looking forward to this event as an opportunity to be inspired by kids who were all on a journey of faith. He was ready to answer the call to take his faith to the next level and start sharing it with the world. Months earlier, it seemed like a reasonable goal when the plan had been hatched. But then cancer showed up in his lungs, and now I wondered if we should scrap the idea.

  Before the lesions appeared in Zach’s lungs and he signed up to take part in a study that required weekly infusions, I mentioned the trip to the oncology doctor to see if she thought it would be possible. I was concerned about disrupting treatment. Before I could get the full question out of my mouth, the doctor stopped me and looked squarely at Zach.

  “Go,” she said emphatically. “Don’t delay anything. Just go. We’ll figure out a way to manage it.”

  So we signed him up for the trip. Being cooped up in a hospital for weeks made him antsy; he needed to stretch and take on some adventure.

  Now I wondered if the trip was in jeopardy.

  ZACH STARTED BACK AT SCHOOL IN SEPTEMBER 2010 FOR HIS sophomore year. He was ready to make a fresh start as he rejoined old classmates and hoped to make new friends. He was also anxious to return to the routine of school life. As much as he hated to admit it, he missed school.

  The pathology report came back with news that the nodules that had been removed from one lung had, in fact, been osteosarcoma, but the nodule on the other lung was not—a little silver lining. Since there were no visible nodules left that were thought to be cancerous, Zach was considered NED (no evidence of disease). We would simply keep a close eye on Zach’s lungs with CT scans every three months.

  So Zach would be able to live the next three months without thinking ab
out cancer. The miracle of normal was upon us, and it was glorious! Cancer was never too far from our minds, but we didn’t have to think about it every day, and that was enough.

  Zach enjoyed high school life. He did all the typical stuff: homecoming, parties, studying. In my mind it was all a huge gift, and my heart was content. All my children were well and safe. I felt whole.

  Zach loved having his friends over, and the basement was often full of kids watching movies or hanging out and talking. One new friend in particular caught my eye. Mitch was just a few inches shorter than Zach and had almond-shaped, hooded blue eyes and dark blond, neatly trimmed hair. He was the kind of kid who was interested in everything. He wanted to know and understand how things worked, and loved to research and talk about what he’d discovered. Zach was the same way. They always seemed to have some fascinating discussion going on, and many of those conversations resulted in an experiment that usually involved something from my kitchen. If he and Zach weren’t at our home, they were out doing something together.

  Zach had a lot of friends, but he needed a close friend who could talk openly with him about cancer and wasn’t afraid to be pragmatic about it, but who didn’t define Zach by it. Mitch opened up a world of scientific and spiritual inquiry that was new for Zach.

  One day I walked into the kitchen and found the two of them frying up a can of beets, one of their many culinary experiments. As I walked out into the hall, I heard Mitch asking Zach about his thoughts on cancer.

  “So, Zach. We should do some research on osteosarcoma,” he said enthusiastically. “I really want to understand the mechanism that causes the cell to malfunction . . .” Then he went on to use words that were over my head. Mitch loved the science behind everything and had a way of making it comfortable for Zach to look at cancer objectively, from a scientific perspective.