Saving Henry Page 15

  Between Day 6 and Day 10, any fear I may have held that perhaps the radiation and chemotherapy weren’t working were dismissed as he suffered their side effects. Henry threw up almost daily, and developed mouth sores that looked more painful than he was willing to admit. Day 6 brought a real scare in the midst of all the others: Henry ran a fever of 102.7, indicating an infection (to the doctors) and that Henry was going to die (to me). But several hours and three antibiotics later, the fever was down and things went back to normal to the extent that anything in a pediatric bone-marrow-transplant ward is normal.

  Henry’s pain eventually worsened. The only thing we could do was give him morphine, which meant that all he did was sleep. He needed this to heal, but as I sat beside him, holding his hand, watching him sleep, my heart nearly broke. His joking, laughing, and stamina were gone, replaced by an eerie silence interrupted only by his slow, steady breath and the beep, beep, beep of the monitors that surrounded him. He had always seemed so big and strong, and now he was tiny and vulnerable. I’d say the same exact thing about myself.

  Allen and I each took twenty-four-hour, two p.m. to two p.m. shifts, eating meals my mom would drop off for us. At night, we rested—I wouldn’t say we got much sleep—on a twin bed the hospital had provided for us. Many days, Allen and I would see each other for only a few minutes as we exchanged medical updates, car keys, and a quick kiss during our shift change.

  Because we were in a small room closed off from the world, there was no one to talk to about how scared and worn out I was. Unwilling to share my fears with Henry or to have him hear me talk about them on the phone, I kept those feelings to myself. But sometimes, rarely, I allowed myself the space to feel the weight of it all. Sometimes, in the quiet darkness in the middle of the night, I would curl up at the base of Henry’s hospital bed and just gaze at my boy lost in a morphine-induced slumber. Because he was asleep, neither his smile nor his cheerful voice could distract me from his desperate medical situation. Mesmerized by the perfectly timed beat of Henry’s medical pump, pushing fluids into and out of his body, my tears would flow unabated by any will or need to hide them. Raw, vulnerable, and terrified, I wondered how my life had led to this place.

  And how in the world we’d make it out alive.

  Given our isolation, we longed for contact from the outside world and spent a lot of time waiting for the moment the mail arrived. I think Henry broke the hospital record, receiving twenty-four packages one day, some containing Batman stickers, some with action figures, others with books or puzzles or games. All made him happy.

  One even contained a celestial chart depicting a star that our friend Evan had purchased and named “Batman” in Henry’s honor. But the coolest of them all was a book titled Henry Goldberg and Batman Solve the Case of the Stolen Robot. Some ingenious friends, Harriet and Larry Berlin, had found a company that creates personalized books and knew that it was just the thing that Henry needed to break the tedium that had set in as he entered his fourth week of complete isolation in his hospital room. “Henry Goldberg looked out the taxicab window. He was very excited. All around him were the skyscrapers of Gotham City. Gotham was even bigger than he had imagined back at home in Washington.” I read on, and the white walls of Henry’s hospital room and the constant beeping from the IV stand cluttered with noisy medical devices faded away, and we escaped to a world that was far more fun and exciting than the one that Fanconi anemia required that we live in.

  When things started to get harder, Allen and I—and Henry especially—were thrilled to find that we had gotten lucky. It just so happened that Henry’s room was equipped with a Magic Closet.

  Batman and Pokémon of all shapes and sizes lived inside. So did toys and gifts sent from people all over the country who loved Henry. When he threw up or got a fever or had to make it through the twenty-eighth dose of medication of the day, or a third or fourth or fifth attempt to insert an IV into the bruised vein on his arm, hand, or foot, the Magic Closet delivered.

  “Holding a Pokémon helps, especially the water type,” Henry carefully explained to a nurse one day. “But the Magic Closet really helps.”

  This short-term solution became a way of life. It was our way of acknowledging the hardship and trying, in the smallest way, to compensate Henry and Jack for it, one challenge at a time, and to provide incentives to keep going. Call it war reparations. Call it positive reinforcement. Whatever.

  Months later, I would receive a call from a woman named Rachel Grossman, whose son Jacob was scheduled to have a bone-marrow transplant at the same hospital, asking for advice. When I finished explaining what to expect, where to live, where to eat, and what to ask the doctors, Henry asked to speak with her. He provided what he thought was the most essential advice on bone-marrow transplants, and that was to ensure that they got a room with a Magic Closet.

  Jack had an especially hard time understanding why he and Henry had to be apart from each other for more than one month when Henry was most vulnerable to infection.

  “That’s not a good plan, Mom,” Jack explained to me one night as I tucked him in, in his new Minneapolis bedroom. “Brothers stay together.”

  “I know,” I said. “But maybe we can think of some other ways you guys can be together without being in the same room.”

  “Like what?” he asked.

  “Like, what if you send him some pictures and write him notes,” I suggested, hoping he wouldn’t pick up on the fact that given that they were three and four, neither he nor Henry could read or write. He thought it was a good idea, and went to work on drawing pictures for Henry. They mostly had to settle on waving to each other, though. Henry would look out from his hospital room at Jack, who stood on his tiptoes at the top of the slide at the hospital playground in the courtyard below.

  “I see him, Mom!” Jack would yell, pointing to one of the hundreds of windows in the hospital. “He’s right there!”

  We were determined to keep Jack happy and distracted from his separation from Henry and our general hardship. Each day Allen, my mom, or I took him to and from day camp, and then on daily outings to one of the lakes, a local bookstore, or one of the many local museums or animal habitats. On my days with Jack, I would leave the hospital at two p.m., grab the biggest cup of coffee I could in the hospital lobby to chase away my exhaustion, shift my state of mind, and run out the front door for a day of activities. Jack loved identifying the species of fish at Underwater Adventures Aquarium, riding the monorail or visiting the butterfly pavilion at the Minnesota Zoo, and manipulating the huge metal dinosaurs at the Science Museum of Minnesota. To this day, Jack’s favorite thing to do is to go to zoos and museums to feed his nearly insatiable desire to expand his mind. We often visited Wild Rumpus, a local bookstore that leaves you thinking, “So many books, so little time.” Housing thousands of children’s books along with real chickens, rabbits, fish, birds, cats, and even a tarantula, Wild Rumpus may well have been Jack’s favorite spot in Minneapolis. By the time we left town, we had acquired every book in the Magic School Bus, Magic Tree House, and Secrets of Droon series, and left empty store shelves that at one time were filled with books on sharks, whales, and dinosaurs.

  Although he seemed fine, Jack occasionally reminded us that he knew what was going on. One morning I awoke around six thirty to find him crawling into my bed.

  “Mom, I had a nightmare.”

  Gathering him into my arms, I asked him to tell me all about it.

  “Henry was in a volcano and smoke was coming out. And there were evil people there.” He sounded scared and, my heart breaking, I asked what happened next. He thought about it and continued, “Then Henry jumped out and flew away like Batman.”

  In the evenings of the afternoons I spent with Jack, I’d come home to a dinner prepared by my mom, or our friend Steven Goldstein, a Minneapolis resident and Culinary Institute of America graduate who clearly knew his stuff. After reading Jack to sleep, I would leave him with my mom and walk downstairs to the gym in our bui
lding, where I would ride the stationary bicycle in a vain attempt to retain my health and sanity. Any illness, however slight, would banish me from Henry’s room, which was a strong incentive to keep pedaling, despite my utter exhaustion. I would return to the apartment to soak in the bathtub and try to remind myself that things would get better. Eventually I fell asleep with the phone next to my pillow in case Allen called. In the morning, I would wake up early and call Allen to check on Henry’s daily blood counts, make Jack breakfast, and drive him to summer camp. On my way back home, I would drive to the shores of Lake Calhoun, take my Roller-blades out of the trunk of the car, clip my Walkman to my shorts, and do laps around the lake, listening to Steve Earle’s “Transcendental Blues” on repeat.

  The life I was living was so different from the one I had expected. My sorrow, fear, loneliness, and exhaustion threatened to crush me, but I remained fiercely determined to be a good mother and give my kids the best life I could. Allen’s insistent optimism was fueled by mankind’s remarkable scientific achievements that made the seemingly impossible possible. In our short lifetime, we put a man on the moon, drafted a map of the human genome, and experienced the advent of the Internet. If we could do that, Allen reasoned, surely Henry’s doctors could save his life. Though our perspectives varied, we agreed on the importance of making every day matter. Just in case.

  At seven a.m. on Day 11, the monotony of isolation, fear, and morphine-induced quiet was interrupted by the miracle of an absolute neutrophil count of 100—a sign that the new marrow was starting to produce blood cells. I knew from the doctors and from following friends’ transplants that this number could be lower tomorrow (not so good) or higher tomorrow (great!), and the same held true for the days to come. In our new world, with every piece of good news, there was often bad. Within minutes of learning that Henry’s new bone marrow was on its way in, we also learned that his bilirubin count (a liver enzyme) was eight times what it should be. We spent hours worrying about the possibility of venoocclusive disease—a serious liver disease and occasional transplant complication—before it was ruled out. No matter how much practice we’d had, these ups and downs never got any easier.

  Four weeks into his recovery, Henry’s blood counts were showing a consistent increase. This meant that he was better equipped to fight off infection and that Jack could visit him in the hospital. Before entering Henry’s room, Jack stopped at the cleansing station outside Henry’s door. He scrubbed his hands and arms for the length of a barely audible rendition of “Happy Birthday,” which was supposedly enough time to sanitize them, and we placed a protective mask over his mouth and nose to ensure that he did not expose Henry to any germs he wasn’t strong enough to fight. At three, Jack’s face was small, and once he had his mask on, only his eyes showed. They were sparkly. He left his dirty, light-up Power Ranger sneakers outside the door to Henry’s hospital room, and eagerly entered.

  “Hi, Henry!” said Jack.

  “Hello to you,” Henry responded enthusiastically. “Want to watch a movie?”

  And with that, the Dynamic Duo was reunited after nearly four weeks apart. For the rest of the afternoon, and long into the evening, Jack lay in the chair next to Henry’s bed and they watched Pokémon movie after Pokémon movie. Eventually Henry fell asleep and Jack took out his Game Boy and played games, content to be with his big brother.

  Jack’s quiet and calm in the face of adversity brought wisdom and a sense of peace to our family, and made him someone Henry wanted to be around, regardless of how he was feeling. While most three-year-olds have a hard time sitting still or keeping quiet, Jack was content to spend that night—like so many other days and nights—hanging with Henry, even if that meant quietly waiting beside his bed until Henry was ready to wake up.

  During these periods of isolation, Jack also seemed to sense his role as Henry’s conduit to the outside world. Whenever he ventured out, he often wanted to get something to bring back to Henry. Sometimes it was a map of the local zoo, so Jack could explain to Henry where every animal was, what species or genus it was from, and whether it had any unique characteristics. Other times it was a chocolate croissant or Skittles or some other longed-for food. Jack never made Henry feel as if he was missing out on anything. In fact, I think Jack looked at wherever Henry was as the place to be, and often he couldn’t wait to get back there. As long as they had each other—and plenty of movies, cartoons, Batman and Pokémon figures—they were more than content.

  Elated.

  That is definitely the best word I can use to describe how I felt on Day 34, when Henry was first released from the hospital. Actually, it would be more accurate if I could take the word, blow it up 1,000 times, and surround it with bright flashing lights, Vegas-style. It was a huge milestone because it meant that his bone marrow was functioning and his immune system was strong enough to leave the safety of the hospital room. And more important, it was a major sign to us that his doctors had faith that he would survive.

  There had been a lot of small, significant steps leading up to this day, as Henry was slowly emerging from being a very sick boy to being himself. He got out of bed, and we cheered. Then he was strong enough to stand. Then he was allowed out of his room and onto the transplant floor; first in a wheelchair and then walking on his own. He’d wear a protective face mask and trail a very cluttered IV pole behind him—a tangle of pumps, tubes, and bags of medications flowing into his body. On the first day he was allowed outside, Allen sat with him on an overcast day in the hospital courtyard and later told me that for the first time in weeks he thought to himself: Henry is going to make it home. I was so happy that Allen had the honor of being the first to see Henry reentering the outside world. Now we each had our own special firsts.

  On the day itself—Day 34—I walked into Henry’s room, grabbed blue and orange markers, and wrote on the dry-wipe board on the wall, usually crowded with daily medical instructions: HENRY IS GOING HOME! We then carefully set Henry, who was still weak from the medication and the number of days he had spent lying in bed, into a red plastic Radio Flyer wagon.

  “I can do it all by myself,” said Jack, as he pulled the wagon, and Henry, out of his room, down the hall, into the elevator, across the lobby, and out of the hospital. That’s what sidekicks and best friends do.

  The apartment in Minneapolis seemed so much more like home once Henry was back with us. We were all so excited, as it was the first time in more than a month that we would all spend the night in the same place. When we arrived at our apartment, Henry had a package waiting for him from our friend Ashley Stringer from back home. He had sent Henry a huge gold trophy he had won in a soccer tournament and which he wanted Henry to have. Henry loved it. He held it up in the air with a huge smile and a bald head. He was a champion.

  We couldn’t return to DC for at least another two months because Henry had to continue to see his doctors daily, but at least we were all back together. I had attended an hour-long discharge class at the hospital a couple of days before Henry was ready to leave the inpatient transplant unit. By that time, I was proficient at changing the sterile bandage that protected his catheter site. My prior experience had merely involved Neosporin and Band-Aids over scraped knees. To change Henry’s bandage required wearing a mask and sterile rubber gloves and unfolding a disposable cloth on which I laid out alcohol swabs, Betadine antiseptic swabs, gauze pads, adhesive tape, adhesive remover, and a sterile Primapore bandage. The first time I saw this display of materials and observed the bone-marrow-transplant unit nurse doing the “sterile bandage change,” I hearkened back to the day we brought Henry home from the hospital when he was born. I had watched my mom change his diaper and his undershirt and thought to myself, “I’ll never be able to do that on my own.”

  The day before we left the hospital, Henry had a nurse who tended to him twenty-four hours a day; the day we left, he had a mom who did. When we arrived at our apartment in Minnesota, a nurse met us with a week’s worth of medical supplies: dozens of vial
s of heparin and saline; 10cc and 5cc syringes; catheter valves and replacement caps; cannula clamps; a case of alcohol swabs, Betadine swabs, and Primapore bandages; a pump to deliver Henry’s IV nutrition; tubing for the pump; a cooler with three bags of his IV nutrition (more would be sent after the following day’s blood test revealed other nutritional deficiencies). This filled four large cardboard boxes and, when added to the supply of cyclosporine, fluconazole, acyclovir, Bactrim, and nystatin that Henry took by mouth a total of seventeen doses daily, it looked like more than my background in public relations and community development could handle. I listened intently and wrote furiously as the nurse showed me how to program Henry’s pump so it would administer the nourishment he needed through the night to grow stronger. Back at the hospital, each of these things seemed like one more thing that would help Henry get better. In our apartment, each seemed like one more opportunity I had to mistakenly kill him.

  There were so many things to learn and do, it was easy to avoid finding time to figure out what to be scared about or what to talk about with Allen or my mom or anyone else. By the time I hooked up one antibiotic, it was time to take the next medication out of the refrigerator or to give Henry a sponge bath or to try to convince him to eat something—anything. Before I could complete whatever I was trying to do, the pump would beep, signaling the end of one medication and the start of another. With more than eighteen different medications a day, this routine continued around the clock. It was rare that I slept more than thirty minutes at a time.

  Once Henry was discharged from the hospital, one of the first things he asked was if he could get a karate instructor so he could begin working on his white-belt basics. After seeing Batman put his karate skills to masterful use, Henry wanted to give it a try. Plus, he was incredibly determined to get strong. The strength of the chemotherapy was apparent from Henry’s bald head, but it was powerless against his endless desire to master new skills, build his strength, and defeat Fanconi anemia. Henry and his martial arts instructor, Anthony, who, to Henry’s enormous delight, had played a Blue Power Ranger in the Power Rangers television series, worked together several times a week.