Saving Henry

by Laurie Strongin

  As I was watching them that evening from the swing on our front porch, I let my mind drift to thoughts of my own childhood, of the curiosity and wonder about the world that defines a child’s dreams. When I shook myself from my reverie, I noticed that Henry had disappeared inside the house. Inside, I didn’t see him on the first floor, and so I went upstairs. I slowly opened his bedroom door.

  “Mom, come in quick,” I heard in an insistent whisper. “Close the door.”

  The room was dark. And then I saw them: dozens of pinpricks of warm, yellow light, flashing and floating above Henry’s head. He had carried the fireflies upstairs, one by one, cupped in his hands. Then he set them free.

  “It looks like the sky,” he whispered, reaching over to take my hand. He was the picture of joy, lying on his back, watching the fireflies light up his room.

  It was this image of Henry that would carry me through some of the darker moments during our time in Minneapolis.

  The next day, Allen, Henry, and Jack were in the car. The trunk was packed, the ignition was on, and they were waiting. I was still inside. I had turned off the lights, closed the blinds, and checked, yet again, to be sure all the appliances were unplugged. Flipping off the last light, I stepped onto the porch and began to pull the door closed. But instead, I paused. I went back inside, back upstairs, and stood in front of the door to Henry’s bedroom.

  HENRY.

  I traced the letters on the door, the ones that had been there since he’d moved into this room, this house, our lives. I opened the door and walked in and, in the quiet, I looked around. In the closet, his costumes: Batman, Buzz Lightyear, Peter Pan, an astronaut. Under the bed: a couple of stray Batman toys, typical kid stuff. I could find nothing among his toys, his soccer cleats, or his books that justified our trip to Minneapolis. I could still see nothing in his face or smile or boundless energy that convinced me that we were doing what needed to be done. For that, I would have to study the Fanconi Anemia Research Fund’s scientific updates predicting improved bone-marrow-transplant outcomes, read through our thick file of the results of his blood tests, and look at my still-bruised thighs.

  We are doing the right thing. I repeated these words silently to myself as I walked back downstairs. Moving forward with Henry’s bone-marrow transplant while he was still strong gave him a better chance of returning to his room and his life than waiting longer or not having a transplant at all, which on all accounts would be met with certain death. We are doing the right thing. I stepped onto the porch and locked the door. I had done this a million times, of course, but this time was different. I was unsure if Henry would ever step foot in the house again, or if I would ever want to. I climbed into the front seat next to Allen and turned around to Henry and Jack. “You ready for this adventure?” I asked.

  “Yeah!” said Jack.

  “Yeah,” repeated Henry. “Off we go!”

  As we began the eighteen-hour trip to Minneapolis, driving east on Calvert Street, north on Wisconsin Avenue, and out of DC, Allen took a CD from the stack: Henry’s Mix. He slipped it into the CD player and with each new song, my mind was flooded with memories.

  When Henry was three, we bought him his first boxed set, the four-volume Nutshell Library by Maurice Sendak, and the CD that accompanied it, Carole King’s Really Rosie. Bedtime featured “Pierre” Henry’s favorite from the set. It was also, therefore, song one on Henry’s Mix. Allen and I would lie in Henry’s bed, singing the story with Henry as he turned the pages. We would all yell, “I don’t care!” as loud as we could along with Pierre and Carole. Long after we hugged him good night, exchanged butterfly kisses with a flutter of our eyelashes on one another’s cheeks, and left his room, we would hear Henry shouting, “I don’t care!” until there was silence. As I recalled that wonderful bedtime ritual, on cue, Henry and Jack yelled from the backseat: “I don’t care!” Their timing was perfect.

  Tom Chapin’s “Homemade Lemonade” was next. Henry’s friend Simon introduced Henry to this song on the way home from a play date. It is an ode to the tasty superiority of the fresh squeezed, straight-from-trees variety and the financial return associated with one of childhood’s biggest pleasures, the lemonade stand. I thought about Henry’s first lemonade stand, which he managed with the help of Jack and his friend Jacob, and which featured a homemade lemonade blend and fresh-from-the-oven chocolate chip cookies. Advertised at 25 cents per cup and per cookie, the boys often got paid more. Over the years, I have noticed that there seems to be a correlation between the number of letters written backwards on lemonade-stand signs and overpayment for the product. The elder of the crowd and originator of the idea, four-year-old Henry manned the table while Jack and Jacob ran up and down our street recruiting customers. “Lemonade for twenty-five cents… or if you don’t have any money, it’s free!” yelled Jack. A couple of hours later, the kids had divided up all the money (Jack was not penalized for his socialist ways) and we celebrated their commercial success with ice-cream cones at Max’s.

  Next: Todd Snider’s “Beer Run.” And yes, on a four-year-old’s mix. We easily rationalized the content by the fact that it was also a spelling lesson, which clearly had worked. From the back seat, our two young sons loudly sang along with Allen and me: “B double-E double-R U-N beer run. B double-E double-R U-N beer run. All we need is a ten and fiver, a car and key and a sober driver. B double-E double-R U-N beer run.”

  Henry’s CD also featured songs like “Krusty Krab Pizza” and “Ripped Pants” featured on SpongeBob Squarepants, and “If I Had a Million Dollars” by the Barenaked Ladies because Henry thought they were funny. He liked “Brick House” by the Commodores, “Out of Habit” by BR-549, and Smash Mouth’s “All Star” because he could sing them while swinging his hips and dancing, which didn’t work so well while he was belted into his car seat. He liked the songs written especially for him like “Henry, You’re Our Superhero” by Caron Dale, the music teacher at his preschool because… well, they were about him.

  While Jack and Henry sang along in the backseat, up front, I struggled to make sense of our recent experience. We gave it all we had. We worked with the world’s best doctors. We hoped. We believed. We were brave. We persevered. And despite all that, it didn’t work.

  In the end, I am left with my belief system intact. I believe in love and science. Nothing more, nothing less.

  Henry’s Favorite Things

  • The Mall of America

  • Camp Snoopy

  • Rock climbing

  • His shiny silver Nike sneakers

  • Roller coasters

  • Collecting marbles

  • Sleeping in hotels

  12

  TAKE TWO

  Henry, the Greatest!

  The Strongin Goldberg Family

  We had spent four years raising money for the Fanconi Anemia Research Fund, organizing bone-marrow drives that attracted hundreds of willing donors, and waiting for science to produce better drugs, better treatment protocols, improved bone-marrow-transplant success rates, and gene therapy advances. While our previous searches of the National Bone Marrow Registry initially produced eleven perfect matches to Henry, more in-depth testing showed that, of those, the best we had was merely one five-out-of-six HLA mismatched, unrelated donor.

  In all likelihood, Henry’s donor, like so many others on the registry, had responded to a friend’s or neighbor’s call for help. Ironically, in the early 1990s, long before I was pregnant with Henry, I had heard about a local woman named Allison Atlas and her need for a bone-marrow donor to cure her leukemia. When I went to get tested, a woman came up to me and said that my resemblance to Allison was striking, and that I was sure to be the perfect match. How I hoped it would be so. Sadly, I wasn’t a match for Allison, who died tragically young, despite the more than 90,000 donors the organization Friends of Allison has added to the registry.

  Having been told by child life specialists that it would be a good idea to talk with Henry about the purpose of our tr
ip to Minnesota a few days before we arrived, I took the opportunity to do so when we stopped in suburban Cleveland to visit our friends Karen and Chip Chaikin along the way. I walked along as Henry, Jack, and their friend Sam Chaikin enthusiastically chased wild rabbits up and down the block. As was usually the case, Henry was the last to tire, so, when the others had had enough, he ran to my side and begged me to join him. I saw a chance to have the difficult, but necessary, talk.

  I was holding his hand, searching for bunnies. “Henry,” I said, “you know how we’re going to Minneapolis to see the doctor?”

  He nodded.

  “We’re going because your blood isn’t working right so we are going to get you new blood.”

  “I know. We already talked about that,” he said.

  I continued, “We have to give you a bunch of medicine that might make you feel sick. Your hair might even fall out, and you are going to have to wear a mask for a long time. It will kind of be like Michael Jordan and Batman combined.” I paused, trying to sense if the information I was sharing was scaring him. “All of the medicine will help the new blood find a good home in your body. It will make you all better so you can go back home and play soccer with the Dolphins and see Bella more, and the doctors a lot less.” Henry listened. I stopped walking and kneeled down in front of him. “Henry, do you want to talk about anything? Do you have any questions?”

  “Yeah, Mom,” he said, his eyes searching the surrounding front lawns. “Where do you think that bunny went?”

  When I look at photographs from our trip to Minnesota, we resembled a family heading out for spring break, having a great time. There are pictures of us at the Nike store in downtown Chicago, where Henry acquired his favorite Michael Jordan number 23 Chicago Bulls basketball jersey and sweatsuit, and in the process, ran into our own DC United soccer team. There’s us having lunch and playing soccer on the shores of Lake Mendota at the University of Wisconsin. While the kids slept in the backseat, Allen and I didn’t talk about the things underneath—our fears, our desperation. Instead, we talked about the things we always talked about when we took road trips: where it would be fun to stop along the way, music and musicians we liked, our family and friends, current events.

  Within an hour of arriving in Minneapolis, we checked into our temporary housing, a hotel that served as overflow for the far more desirable Ronald McDonald House, which had more sick kids and families than it could hold. For years, I had been dropping extra change into the Ronald McDonald House collection box by the McDonald’s cash registers in the hope that in some small way it would help those sick children get better. It was nearly impossible to fathom that my son would be one of those sick kids and that my family would benefit from the $3.49 Happy Meal that left 51 cents to help out people like us. We joined the Ronald McDonald House waiting list, hoping that someone would get better and get to go home so we could move in. At the time it didn’t occur to me that sometimes families check out never to see their child again. Ever.

  Henry and Jack loved staying in hotels: playing video games on the TVs, ordering room service, pushing all the buttons on the elevators. If there is a game room, forget it. They would be lost for hours. But this hotel was different. For one, we were on the ground floor, so there were no buttons to press to get to our room. There was no room service. No games on the TV or anywhere else. Our view was a parking lot. Our destination: a children’s hospital.

  Soon after we arrived, we put our bags in the dark and dismal room and headed out in search of some fun. I needed an immediate escape from the fear that threatened my ability to enjoy our last day together, for who knew how many weeks. As good fortune would have it, the country’s biggest, brightest, busiest, noisiest, happiest place was a mere fifteen minutes away. Mall of America boasts 4.2 million square feet of retail therapy, which for me and my family was a start.

  Mall of America has something for everyone. Groups of elderly people in Easy Spirit shoes walk the half-mile-plus indoor linoleum “track” on each level for exercise. Couples tie the knot in the Chapel of Love. If you can’t find what you want or need in the more than 520 stores, then it probably doesn’t exist. We logged eight hours in that first trip to the mall.

  Jack’s first choice, and therefore one of our early destinations, was the Underwater Adventures Aquarium, the world’s largest underground aquarium. Jack had always been fascinated by animals, particularly those that live underwater. By that time, he had already amassed a huge collection of plastic whales, which he would line up and categorize by tooth type (baleen vs. toothed) and then again by ocean habitat. (He would later, at age seven, be invited to teach a kindergarten class on whales and dolphins.) At the aquarium, Jack darted from tank to tank, pointing out all the different types of fish. Henry chased after him. After seeing what seemed like thousands of sea creatures (4,500, if the advertisements are right), the boys arrived at the shark tank, where they had the opportunity to touch real live sharks and stingrays. As Jack explained the familial relationship between sharks and rays, Henry reached right in to touch a stingray. As Henry’s hand hit the water, a shark reared its head, exposing its sharp teeth (at least this is how the boys tell it) and darted toward Henry. Jack saw it all happen, grabbed Henry, and pulled his arm out of the water. In that moment, the story about how Henry nearly got eaten by a shark—and about how Jack saved him—was born.

  All that excitement made us hungry, so we headed to the Rain-forest Café. With its cute animals and very full and colorful gift shop, Henry was in his element. Up until the faux lightning and thunderstorm, Jack liked it too. But with the first clap of thunder, Jack bolted out of his seat and ran as fast as he could out of the restaurant. Allen ran after him, but could not convince Jack to return. Jack waited outside, far from the thunder, while Allen informed me that Jack had accepted his offer to go to the mall’s LEGO store, but refused to come back in to finish his lunch. Henry and I finished up our meals and got Jack’s pizza and Allen’s burger to go. Thankfully, the LEGO Imagination Center was on the same level, so we met Allen and Jack, the latter of whom was busy constructing LEGO cars to send down the ramps. Jack could have spent hours checking out the huge LEGO dinosaurs, and building and racing LEGO cars in the build-it-yourself bins. And, over time, he did.

  Amazingly, right in the middle of the mall is Camp Snoopy, a seven-acre amusement park with rides, games, and junk food (also known in our family as breakfast, lunch, and dinner). We rode the Li’l Shaver roller coaster many times, raced boats, and ate ice cream.

  Without the Boardwalk and Atlantic Ocean, it was no competition for Funland, but it was big and loud and fun and Henry-ish, nevertheless.

  I had tried to prepare myself for the moment when we had to walk into University of Minnesota’s pediatric bone-marrow-transplant clinic. But when the four of us finally pushed through the wooden doors at 8 a.m. the next day, and I saw the rows of chairs filled with little kids wearing baseball caps to cover bald heads, their faces swollen from steroids and absent of smiles, I had to fight the urge to grab Henry and Jack and run back to the car. We didn’t belong here in the land of the sick, where how people were doing was so obvious it was pointless to ask.

  For the first five days, Allen and I had meetings: Henry’s radiation therapists, his cardiologists, nuclear medicine technicians, social workers, infectious disease specialists, and, because radiation and chemo cause tooth decay, even dentists. Henry, meanwhile, endured numerous blood tests, IVs and anesthesia, a bone-marrow biopsy and aspiration, chest X-rays, an echocardiogram, kidney and liver ultra-sounds, chest and sinus CAT scans, and dental X-rays. He attended a radiation-therapy consultation, radiation simulation, and a bone-marrow-transplant class, where he was offered the opportunity to play with a bald doll with a central line in his chest. Needless to say, it was no competition for the Batman figurine he brought with him.

  He remained upbeat throughout it all, carrying to each appointment the sword that Papa Sy had given him. As the nurses prepared to take yet anothe
r sample of blood or insert an IV, Henry would hold that sword tight, stick it high in the air, and exclaim, “Let’s get it over with and get out of here!” The nurses would burst into giggles and have to take a moment to compose themselves before inserting the needle.

  Watching Henry approach these experiences—even a trip into the small, dark MRI machine—with courage and a sense of humor not only made me appreciate my son for his ability to make everything better for everyone else, but it also provided Allen and me with the strength we needed to keep signing medical release forms. And checking yet another day off the calendar. Each afternoon when the assortment of tests and procedures was over, we left the hospital and headed for something, anything, that better resembled the life we had left behind at home.

  One afternoon Allen took Henry and Jack to a party in the hospital courtyard so they could meet some of the Minnesota Vikings cheerleaders and cheer for their favorite turtles during the hospital’s annual Turtle Derby. I stayed in the hospital clinic to talk with the child life specialist, hoping to better understand what to expect over the next days, weeks, and months. I had spent hours and hours on the Internet searching and re-searching the Centers for Disease Control, and every other website I could find, to help prepare Henry and our family for the transplant. While there was plenty of information on the stages of the transplant process and how Henry’s body would react, I still didn’t know much of the critical stuff. Whether Henry could bring the blanket my mom knit for him when he was a baby into his hospital isolation room. How many weeks or months Jack would have to wait to see him. Or whether I could kiss or hold Henry.

  I longed for a rule book that we could follow to guarantee that Henry would survive, but none existed.