Saving Henry (16 page)

Henry shows perfect form
The Strongin Goldberg Family

“
I
thought the stem cells were going to arrive later tonight,” Allen said when he came into Henry's room and found us sitting on Henry's bed, the transplant behind us. “I can't believe I missed it.”

“I'm sorry,” I said. I knew that he was going to be disappointed. I stood to hug him. “It only took fifteen minutes.”

Allen took a seat on the edge of Henry's bed. “Hey, Hen, do you feel any different? Are you craving food other than Pringles?”
Allen asked, wondering aloud if Henry might already have adopted some of his donor's tastes. Thankfully, along with the stem cells for the transplant, a nurse had come equipped with a Polaroid camera to document the occasion. Allen flipped through the images: Henry with the stem cells, Mom and Henry with the stem cells, Henry eating his chocolate Wonder Ball while the stem cells flowed through his IV, Mom and Henry after it was over. The stem cells didn't look any different from the liquids in the bags already hanging on Henry's growing IV tree—morphine, insulin, methylprednisone, GCSF, cyclosporine—pumping into his central line in an around-the-clock, well-orchestrated attempt to save his life.

We had been told by Henry's doctors that the most unpleasant side effects of the radiation and chemotherapy would begin around Day 2 and last until Day 15 or so. Although I had originally anticipated that Day 0 through Day 21 would just be about surviving and flipping the pages of the calendar on the wall, they were, at first, about a whole lot more. Our main job was to help Henry through the side effects, and to wait and hope for a sign that the transplant had worked. Every morning a nurse would come and take a blood sample from his catheter to see if his bone marrow was producing blood cells. Rising blood counts were the best, and only, sign that the transplant was working.

The things that Henry could and couldn't do during his transplant recovery changed over time. Because the chemotherapy and radiation had almost fully disabled his immune system, during the beginning stages, his body was unable to fight infection. This meant that he could have little to no direct contact with the outside world. Although there had been some progress in treating infections, prevention remained the best strategy. Henry was taking numerous intravenous antibiotics throughout the day and night to protect him against viral, bacterial, and fungal infections. He had to brush his teeth and the inside of his mouth with a special pink sponge tooth-
brush five times a day, and get frequent sponge baths and bandage changes to prevent infection around his main catheter. I became accustomed to washing my hands every time I entered Henry's hospital room or touched food, a toy, my hair, or anything else before touching him. After a week, my hands were red and raw. I knew to wear the purple, sterile gloves when I helped Henry to the bathroom because it was dangerous for me to touch his urine, post-chemotherapy. I knew that right after Henry threw up and had finally fallen back to sleep was the best time to race down the hall to the bathroom, since using Henry's was prohibited. I knew that the night nurse would come in around six in the morning to give me a copy of Henry's daily blood count so I could search for any signs of hope.

For the first few weeks, only Allen, my mom, and I could visit Henry, and one of us was always there with him, right next to his bed, in his eight-by-ten room, every hour of the day. Allen and I switched off days with Henry while the other spent the day with Jack. We were horrified when anyone other than Henry's doctors or nurses asked to gain entrance to Henry's room, such as the hospital volunteers who wanted to know if we wanted a break to take a walk or have a meal. Although I put on a brave face for Henry, and for others, I was terrified. I knew he was in pain. Watching a grimace conquer his smile, seeing him lose his hair and be tethered to a wall of machines was more chilling than what I had been imagining since we made the decision to come to Minneapolis.

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.

 

H
enry'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.

 

G
iven 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 pic
tures 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.”

 

I
n 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 building, 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.