Fly a Little Higher Page 5

  My brain turned from bouncing around with questions to abrupt slow motion. Hoooomeeschooool. I saw my terrified expression reflected in a mirror that hung on the door across from me. A scene popped into my mind: Zach, ten years later, standing on a street corner in front of the hospital and holding a sloppily handwritten sign that reads “Please help! Unable to find work. Laura Sobiech homeschooled me.”

  “He won’t be able to go to school?” I asked, interrupting her.

  “No,” she said gently, taking the little yellow calendar from my hands and placing it on the counter between us. “So, Zach,” she said, looking at him as he sat on the examining table and then back at me, “each one of these infusions will be done in the hospital and will take at least two days, most will be longer.” She traced the little yellow card with her finger. “Your white blood cell count will drop with each infusion, leaving you with little immunity to infection. You won’t be able to go to school because it will be too risky.”

  I looked over at Zach, his long legs, clad in baggy jeans, gently swinging as they hung off the edge of the table. Giant basketball shoes tapped the floor as his feet swung back and forth, his hands clasped and resting in his lap.

  “What do you think?” I asked.

  He shrugged, grinned, and said, “Who needs school?”

  I smirked at him, picking up on the glint in his eye. Yes, his life was changing fast and in a big way, but he was up for the challenge and missing a little school wasn’t going to hurt him.

  Nicole went on to give us the outline of what the next several months would look like. Chemo would start in a couple of days, after a gamut of tests and X-rays and scans had been done. At around the fourteen-week mark, Zach would have surgery to remove the tumor and replace his hip. Then chemo would start back up according to how necrotic (dead) the tumor was: over 90% necrotic = less chemo, less than 90% necrotic = more chemo. Either way, it was going to be a long year, but Zach was ready. He didn’t complain or even show fear; he just wanted to get through it, then on with life.

  Nicole gave us the information we needed to get started down this new road, patiently repeating things as she could see the confusion play out on our faces. We had been bombarded with the details of a whole new life that included a whole new vocabulary: heme-onc, a hematology/oncology doctor; cisplatin, a chemotherapy drug; doxorubicin, another chemotherapy; methotrexate, yet another chemotherapy. Our brains were swimming.

  We gathered up our packets of information, our little yellow calendar, and a list of scheduled times and places for tests, X-rays, and surgeries. We stepped out of the room and walked down the hall to the door, on our new path to our new life—our Via Dolorosa, our Way of Suffering.

  ZACH’S RIGHT UPPER CHEST WAS TENDER AND SORE FROM THE PORT that had been surgically placed just under the skin earlier in the morning. He had been moved from the OR to his new home in a cramped room on 5B at Amplatz Children’s Hospital in the University of Minnesota Hospital Medical Center where he lay quietly waiting for his first chemotherapy treatment.

  The nurse walked into the room dressed in a protective disposable gown and a mask that hung around her neck. She held a bag of yellow liquid in her hand, the first bag of chemotherapy, the poison that they would pour into my son to save his life. This is so primitive, I thought. Someday we’ll look back on this and shake our heads at how barbaric it all was.

  My stomach turned as I watched the nurse, who was nervous and apologetic about having to access Zach’s newly placed and very tender port. It was supposed to have been accessed, the tack-like needles pushed through his skin into the port and the IV lines ready to be hooked up to the fluids, during the surgery, but due to a miscommunication it had not been. She put her mask over her mouth and nose and pulled her gloves on, then unfolded the port access kit. As she scrubbed the tender area with antiseptic from a preloaded sponge and proceeded to push each needle into Zach’s chest like a tack into a bulletin board, I watched helplessly as Zach turned his head to the side with his eyes closed and a look of quiet agony on his face. He was trying so hard not to let it get him down, but pain was a worthy adversary and challenged his resolve.

  My heart was pierced as I watched a look of defeat settle on his face. Pain had won the first battle. I wanted nothing more than to jump from my seat and comfort him like I had when he was a young child, to stroke his hair, kiss his forehead, and tell him how much fun we would have when we were done with this nasty place. But I couldn’t. He was too old for the simple comforts of childhood. Yet he was much too young to bear so much suffering alone.

  The nurse hooked the lines from Zach’s port to the bag of chemo on an IV pole, then pushed a button. Swish . . . click . . . swish . . . click . . . swish . . . click . . . The poison slowly marched through the tube and into Zach’s chest. As he lay there, not wanting conversation, we sat quietly and listened to the sound of the pump. It was a sickening sound that had a lulling effect.

  Our journey with chemo had begun.

  The hospital was old, worn-out, and cramped. Big kids and little kids had to share rooms with just a thin curtain separating them. Some hospital stays were tolerable if a few conditions were met: a quiet roommate with quiet visitors, the window side of the room, and our favorite nurses. Other stays almost made us crazy: noisy kids (or worse, noisy parents), no window, and people walking through constantly.

  There were a couple of hospital stays that first year that stood out.

  Zach’s first roommate had a brain tumor, and there was some question as to whether or not the tumor had caused blindness. He was around seven years old, and his whole head, with the exception of a dark tuft of hair on top, was wrapped in bandages. I walked in the room one morning and found the bed empty.

  “Hi, hon,” I greeted Zach. “Where did your roommie go?”

  “He got to go home this morning,” Zach answered cheerfully. “And, Mom, he can see!” Zach never laid eyes on that little boy on the other side of the curtain, but he cared deeply about him and gave me updates each morning when I would come into his room.

  “I’m not suffering. That kid is suffering,” he would say.

  Another time we were assigned a room with a little boy who had a mental disability, among other problems, and very loud. He loved cartoons and gave a continual commentary about them as he watched. “Oh boy . . . oh boy . . . he’s in trouble now,” he would yell. His poor mother spent most of her time shushing him. Zach would look at me and roll his eyes and shake his head.

  “It’s going to be a long stay,” he whispered.

  There was one little boy who had the voice of an angel. He had osteosarcoma like Zach, and had to have his femur amputated and a procedure called rotationplasty performed to reconfigure his leg. He diligently did his homework with his mother’s help and never complained, even when physical therapy came to work with him. Though we only roomed with him once, this little boy had a big influence on Zach.

  “Mom,” he said one day when we were alone in the room, “if I had to die instead of that little boy in the bed next to me, I would. It’s not fair. No kid should have to lose their childhood to this.” He was angry.

  No teenager should either, I thought to myself.

  Seven

  IT FELT GOOD TO CROSS THE WEEKS OFF AS WE COMPLETED EACH treatment. I had decided when Zach was done with treatment, we would throw a big party to celebrate kicking cancer’s butt. There would be music, dancing, and lots of laughter. Zach had been playing his guitar more than usual lately, and I had an image of Zach standing on a stage playing for a room full of people who were just as excited about our victory as we were. Then, when the party was over, we would pick up where we left off: Zach would go back to school, graduate, and move on to college.

  Good news kept coming our way. The chest CT scan showed a small spot that was likely just residue from a previous infection, and the bone scan came back clean. It appeared that the cancer had not spread. The doctors were ecstatic.

  If the little yellow cal
endar was the game board, then blood counts were dice. We were always waiting to see what the counts would be. If counts are good, proceed to the next square, and roll the dice again. If counts are bad, stay put until they are good. Each infusion was a crap shoot—we simply had to wait and see.

  Zach’s third infusion was scheduled for a couple days before Christmas. The infusion would take at least two and a half days, and then he’d need fluids to flush his system. It seemed Christmas would be spent in the hospital, and it was heartbreaking to think about not being together as a family on this, our favorite holiday.

  Every year on Christmas Eve, we would spend the day buzzing about the house in preparation of our favorite evening together as a family. We would make our traditional Christmas Eve meal of tortellini soup, shrimp cocktail, and a special dessert. The table would be draped in a gold jacquard tablecloth and set with candlesticks and our finest dinnerware. The Christmas tree would be lit with hundreds of multicolored lights and decorated with ornaments the kids had acquired throughout the years. We would go to Mass in the late afternoon, have our simple candlelit dinner, then the kids would exchange their gifts with one another. It was our favorite night because it was just us, no one else.

  As heartbroken as I was that we were going to miss this special evening together, I went into fix-it mode and did my best to come up with a solution. We decided to move our Christmas Day celebration with extended family up a week and planned for our immediate family to be at the hospital on Christmas Eve with Zach, then return to the hospital early Christmas morning. It was going to suck, but it was the best I could come up with.

  Zach was heartbroken that he would have to be at the hospital, but what else could he do? He didn’t have a choice. The other kids couldn’t quite get it. They ganged up on me and asked, “Why can’t they just delay the chemo? Why can’t he go in after Christmas?” I’d thought the same thing myself. Was it really that big of a deal to delay a few days?

  I asked Rob what he thought.

  “No,” he said with firm resolution. “The docs know what they’re doing. We aren’t going to delay Zach’s treatment for Christmas no matter how hard it’s going to be.”

  Rob is a methodical person, and once something is decided, that is the end of it, there is no more discussion. It was one of the reasons I fell in love with him, and after we got married, it was one of the things that drove me crazy. Over the years he had softened a bit, but Zach’s cancer had him back to working by the book. Rob found comfort in routine.

  Two days after our early celebration at Grandma and Grandpa’s house, we went to the clinic for Zach’s appointment, packed and ready to check into the hospital for his next infusion.

  “Maybe you’ll get to meet one of the Vikings’ players. I hear they visit the hospital over Christmas,” I offered lamely as we waited for count numbers after his blood draw. He raised his eyebrows and nodded with a look of “not good enough” written on his face.

  The nurse came out and sat down in a chair next to us. “Well, I’m afraid you won’t be checking into the hospital today,” she said apologetically. “You didn’t make counts; you’re about five hundred too low.” Zach’s immunity was too low for additional chemo. He would have to wait.

  A look of elation beamed on Zach’s face. You’d think he just won the lottery, he was so happy. Christmas had been saved! Back at home the girls and I hustled about the house. We dressed the table while Zach fried up the spicy Italian sausage for the tortellini soup. Rob ran to the grocery store to pick up a couple of bottles of bubbling apple juice and a tube of ready-to-bake biscuits. Once everything was prepared, we all dressed in our best clothes and headed to Christmas Eve Mass where friends were waiting. When we got home, we had our traditional candlelight dinner together, and then we gathered by the fireplace and the kids exchanged their gifts.

  It turned out to be one of our most memorable Christmas Eves followed by a blessed Christmas Day. We opened our home for an impromptu gathering of our extended family. The house was bustling with activity the whole day, the cousins running through the house and the adults playing Rock Band on the Xbox for hours on end. It was a perfect Christmas.

  THERE WAS NO WAY I WAS GOING TO TRY HOMESCHOOLING ZACH IN the midst of dealing with cancer. There were only so many things my shrinking brain could focus on at once, and cancer had called “dibs.” So I’d worked with the school to find out what our other options were. He was a smart kid who picked up on things quickly. If he got a poor grade, it wasn’t because he didn’t understand the material; it was because he either hadn’t turned in the work or hadn’t studied enough. We had the option of a tutor coming to the house who would help Zach work through the material his classmates would be doing, or he could go at his own pace with online classes. We soon realized it would be too difficult even with a tutor for Zach to keep the same pace as his classmates; as chemo built up in his body, he got increasingly sicker and simply wouldn’t have the energy to keep up. Things were too unpredictable to take that route, so he chose online classes.

  One month in, we had a system. If he was home, Zach would sleep in until around nine o’clock, get up and shower, then come upstairs and sit in the middle of the couch in the living room with his laptop and do schoolwork for three hours a day. If he was in the hospital, he would spend the morning hours in bed with his computer, working on schoolwork until I came from home to spend the afternoon and evening with him.

  After he was done with his schoolwork and if he was home, he would head down to the family room and play Rock Band on the Xbox until Sam came home from school, and then the two of them would hang out for a little while. If he was in the hospital, Zach would spend a good portion of the afternoon researching guitars, drum sets, and other instruments. We had learned from another family at the hospital about Make-A-Wish and what they had to offer children battling life-threatening diseases. We filled out the application for a wish to be granted and were told by the hospital social worker to dream big. Much to Grace’s chagrin, rather than choose a family trip to Disney, Zach chose music.

  Most evenings at home, a friend or two would visit Zach. If Zach was in the hospital, Rob would come in with Grace and some fast food, we would have dinner together, I would go home, and Rob and Grace would stay until around ten o’clock. The next day we would do it all over again.

  I took leave from my job at the dental office after Zach was diagnosed. His treatment demanded much of my time, and I didn’t want to leave him alone for long periods of time. But I continued teaching CPR classes when Zach was feeling well enough and volunteering at the fire department, going on calls as they fit between hospital visits; it gave me a chance to keep my foot in my pre-cancer life. I spent my days at home and by Zach’s bedside in the hospital researching osteosarcoma. Osteosarcoma is considered an orphan disease, which means it’s rare and doesn’t get the attention of some of the “sexier” cancers like breast cancer or prostate cancer. Approximately four hundred children in the United States are diagnosed each year, most in their teens. The last real breakthrough in treatments for the disease happened over twenty years ago, and those treatments work for only 70 percent of patients.

  While Zach pored over the Guitar Center website researching the instruments, I spent hours reading through studies that were over my head, doing my best to learn the medical jargon and research our options. I read books and articles, looked at diet therapies, and called clinics around the country to learn all I could. I was open to any treatment, but I needed to see numbers to be persuaded. Traditional medicine had the research and results to back up their claims, and that was the course we felt the most comfortable and confident with.

  As word got out about Zach’s diagnosis through CaringBridge, a website that enables families to share medical updates about loved ones with the community, Facebook, and word of mouth, we began to receive suggestions for various alternative treatment options. People were passionate about cancer, some on a level that approached religious zeal. Most people w
ere sensitive in their approaches; they understood the limits of what they had to offer but needed to share the information they had just in case it might help in some small way. Others, however, were thoughtless, offering pointless suggestions or questioning our treatment choices without any real regard for how it would make us feel. Everything from pat suggestions like, “You should feed him more broccoli,” to “You’re killing him with the chemotherapy” were hurled at us.

  I began to see how uncomfortable people become at the thought of dying young and how little people think before they speak. People would say things to make themselves feel better even though they didn’t serve us any purpose. I’d often fantasized about writing a tutorial entitled “What Not to Say.” It would be very basic, just a couple of hard and fast rules:

  1. If the sentence you are about to say starts with the phrase “have you” or “you should,” don’t say it.

  2. Unless you have had a child with the same disease and you’ve been through the exact same thing, don’t offer advice.

  3. Don’t tell me about everyone you have ever known who has either battled cancer or died from cancer.

  4. Don’t tell me to be grateful.

  Zach went through the same kind of intrusive questioning. At different times during his treatment, depending on where he was in his treatment schedule, Zach was bald. When he was bald, it was easy; no one asked questions because they already knew the answer—he had cancer. It was when he had hair that things would get tricky. Because the tumor had eaten away a good portion of the bone at the neck of the femur, he needed to use crutches, which would prompt people to wonder what was wrong.

  One Sunday morning we were walking into church when a sweet, older gentleman walked up to Zach.

  “What’s your injury?” he asked, giving Zach a hearty slap on the back.

  Zach, not wanting to make the man feel awkward, which undoubtedly he would, gave me a quick look of Oh boy. Here we go.