Saving Henry

by Laurie Strongin

  Baseball fans around the country, but maybe most of all in Baltimore and DC, got caught up in Cal Ripken’s streak in the mid-1990s. Cal was a star shortstop and third baseman for the Baltimore Orioles from 1981 to 2001, and was vying to break Lou “Iron Man” Gehrig’s fifty-six-year-old record of playing in the most consecutive games. On September 7, 1995, about a month before Henry was born, Cal did what was once considered impossible. He played in his 2,131st consecutive game, breaking Lou Gehrig’s superhuman record before a sellout crowd of 46,272 in Oriole Park at Camden Yards as the Orioles beat the California Angels 4–2. With that, Cal became the greatest iron man in baseball history.

  Cal was Henry’s second-favorite hero. In the summertime when we would frequent Funland, an amusement park in Rehoboth Beach, Delaware, Henry would save up the tickets he would win playing games so he could claim his prize: yet another Cal Ripken baseball card. Henry wore an Orioles baseball cap and Cal Ripken T-shirt and practiced his swing, yearning to be a professional baseball player like Cal when he grew up. Watching him whack wiffle balls from our front porch, across the street, and into the neighbor’s yard, Henry’s dream of becoming a professional baseball player like Cal seemed within reach. He certainly had the strength, focus, and tenacity required of an iron man.

  In March, just a few weeks before I was scheduled to begin the Lupron shots for attempt number nine, we went to Florida. We set our sights on Walt Disney World, where we had a history of good times, and on Captiva, a beautiful sanctuary on Florida’s west coast where we had enjoyed birds, dolphins, manatees, and shell collecting years earlier.

  As it happened, the Minnesota Twins had their spring training in Fort Myers, Florida, not far from Captiva, and they were playing the Orioles while we were in town. Allen called the Twins’ public-relations staff and asked if they would arrange for Henry to meet Cal Ripken.

  On March 15, 2000, we arrived at the Lee County Sports Complex. It was a beautiful, sunny, and warm day—perfect for baseball. Jack and I made our way to the bleachers. Henry and Allen headed to the dugout where the meeting would take place. Henry, in his well-worn Batman T-shirt, got to swing Cal’s bat, and the two of them talked for a while. When Henry and Allen joined me and Jack, I was eager to learn what they had discussed. Did Henry get the answers to big questions like “How did it feel to break Gehrig’s streak?” or “How much longer would he play ball?”

  “Mom,” said Henry. “I met the real Cal Ripken! I got to hold his bat!” When I asked what they talked about, he answered, “We talked about Pokémon. I asked him which one was his favorite.”

  “Well, what did Cal say?” I asked.

  “Charizard,” he said, as if the answer was so obvious it need not be asked.

  A few days later, tanned, relaxed, and happy, we returned to Washington. But we weren’t done yet.

  That week, I started my Lupron shots. Also that week, Allen sat the family down at the kitchen table for a very serious talk with our sons.

  “Guys, listen very carefully,” he boomed. “Today you are going to meet William Jefferson Clinton, the president of the United States!”

  “No way!” yelled Henry. “I voted for him in school.”

  “Me too!” added Jack.

  Allen had arranged, through our friend Peter Rundlet, who worked in the White House counsel’s office, for the four of us to attend one of President Clinton’s weekly radio addresses.

  “Do we get to go inside the White House?” asked Henry, who, like all Washingtonians, had driven by it countless times.

  “Not just the White House, but inside the Oval Office, which is probably the most important room in the whole world,” replied Allen.

  “Cool!” said Henry. “I’m going to wear my suit.”

  “Perfect! I’ll wear one too,” Allen said.

  The boys dressed in their khaki pants and blue blazers and we headed downtown. We passed through security with a small group of people who shared the privilege of hearing the radio address live, and within minutes the kids were face-to-snout with Buddy, the president’s dog, with whom they exchanged kisses for licks. When it was time for the recording, we all entered the Oval Office and were asked to keep perfectly quiet during the taping. This was easier said than done for Jack, who was merely three years old. Allen held on tight to Jack, who spent the entire time desperately trying to pull the iconic portrait of Andrew Jackson off the wall. Thankfully, the address ended before Jack was successful, and we lined up to meet the president.

  “You must be Henry,” the president said, when it was our turn. “I hear you are a brave little boy. It’s really nice to meet you.”

  “Thanks!” said Henry. Not one to dwell on himself, Henry held out the toy he had been carrying and said, “This is Jake Justice. He’s a Rescue Hero.”

  “He looks strong,” said the president. “Just like you.”

  Four weeks later, my pregnancy test was negative.

  As we prepared to call our family and friends to tell them of our impending departure to Minneapolis, I tried to focus on the positive. The transplant would take place at the University of Minnesota Children’s Hospital with a donor identified through the National Marrow Donor Program, who matched five out of six of Henry’s antigens. This was the very same hospital where the first pediatric bone-marrow transplant was successfully performed, I explained again and again, and featured some of the world’s most highly skilled Fanconi specialists, who had performed dozens of Fanconi transplants. We knew that this place and these doctors gave us the best possible chance that Henry could be among the first patients with his particular type of Fanconi anemia to survive an unrelated bone-marrow transplant. Once again, we would be pioneers, hoping this time that the medical breakthrough would belong to us.

  “I’m so scared, but I know we have to do this now. Henry won’t survive if we delay the transplant any longer,” I said to my friend Karen on the phone one night, after Henry and Jack had fallen asleep. We were planning to stop at their home in Cleveland for some fun on the way to Minneapolis. “But I’d rather be doing PGD again than having a transplant that is so uncertain. I would undergo PGD nine more times—nine hundred more times—if I could.”

  “You did everything you could, Laurie,” Karen said, her voice breaking. “I can’t wait to see you and give you a hug,” she added.

  “Good, because I need one. A big one.”

  As I repeated the conversation with my family and friends that night, it was, of course, not lost on any of us that the Dickey Amendment–induced delay that interrupted Dr. Hughes’s work for nearly one year had denied us the time for at least three additional PGD attempts.

  One of those just might have made all the difference.

  Henry’s Favorite Things

  • Going to Funland

  • Cotton candy

  • Winning stuffed animals

  • Building drip castles

  • Soft ice cream

  • Getting buried in the sand

  • Aunt Alice and Uncle Peter’s beach house

  10

  FUNLAND

  Henry tickles my chin with a magic feather on the boardwalk in Rehoboth Beach, Delaware

  The Strongin Goldberg Family

  The Paratrooper is one of eighteen rides at Funland, an amusement park on the boardwalk in Rehoboth Beach, Delaware. The park is filled with music from a vintage carousel, mixed with the sounds of waves crashing, alarms signaling victory in Whac-A-Mole or Skee-Ball, and the laughter and cries of kids and parents overwhelmed with summertime joy. The air is filled with the salty ocean mist and the good, greasy smells of nearby popcorn and Thrasher’s french fries and vinegar. Ride tickets are sold individually for 25 cents, but $10 will buy a book of 54 tickets, and nearly every adult is seen with an abundance of them.

  We were barefoot in Funland. It was sunny and warm. We’d had ice cream for lunch and cotton candy for dessert. It was a few days before we were scheduled to leave for Minneapolis, but that didn’t matter. Nothing
mattered except one sweet fact: Henry and I were on the Paratrooper.

  I had ridden the Paratrooper with friends in grade school, boyfriends in college, and Allen as a newlywed. But nothing prepared me for a ride with Henry. It all started with that look—that Henry look where his eyes sparkled extra brightly and his double dimples were tempting me to gobble him up.

  And then he said, “You know, Mom, if you want to go, I’ll go with you.”

  Of course I wanted to go. After Henry first made me a mom and I had time to think about all the stuff I wanted to do with him, one of the first things that occurred to me was I couldn’t wait to take him to Funland, just like my parents had taken me when I was a kid. I couldn’t wait to watch him ring the bell on the fire engine or to ride on the carousel, but most of all, I couldn’t wait to ride the Paratrooper with my baby. Of course, with its height requirement, fear factor, and the threat of Fanconi anemia, it was unclear if we would ever get there.

  So when he asked the question, I didn’t even hesitate. We got lucky and the Paratrooper car that stopped right in front of us was Henry’s favorite color: gold. The ride is like a Ferris wheel, but a lot more fun. The seats look like chairs, topped with a big umbrella. We kicked off our shoes and jumped on. The ride began to lift, going faster and faster, and we felt the wind rush through our bare toes and held each other’s hands, fingers clasping fingers. As the ride peaked, we screamed as loud as we could. I looked out at the ocean and breathed and screamed and cried, and wished it would go on forever.

  When we neared the bottom, we waved frantically at Allen and Jack. Every time we started our descent, we screamed as if it would never end.

  When the ride was over, our cheeks were flushed and Henry’s smile was as big as I’d ever seen it. We collected our shoes, and Henry and Jack were off again; darting from ride to ride, stopping for their favorites: the ball pit, the helicopter, the carousel. The tickets in my pocket slowly disappeared.

  Then it was time for the games. Henry and Jack picked the game where the main prize was a Pokémon stuffed animal. The object of the game was to throw a beach ball so it would land on the rim of a red or blue bucket, which were surrounded by far too many yellow buckets. One dollar and one try later, Henry won. Arms raised and fist-pumping in victory, Henry selected Charizard, of course. Jack had greater difficulty. The first ball bounced off a bucket and landed on the boardwalk. He tried and tried, to no avail.

  “You can do it, Jackie-boy!” Henry yelled while patting Jack’s back.

  Each loss was met with encouragement by all of us and greater frustration for Jack. Henry asked for another turn and tossed the ball right into the red bucket. Instead of choosing Pikachu or another character, he asked for Blastoise, Jack’s favorite. He smiled his Henry smile and handed it to Jack. From the look on Jack’s face, that was at least as good as winning it himself.

  I wanted this day to last forever, and I felt my disappointment growing as the day grew dark and Allen said it was nearing time to go. But not before we stopped at Kohr Bros. for chocolate-and-vanilla-twist soft ice cream with chocolate jimmies, which Henry and Jack ate while clutching their Pokémons, sitting on a bench overlooking the Atlantic Ocean.

  “Can we go to Candy Kitchen?” asked Henry.

  “I want LEGO candy and wax bottles!” exclaimed Jack.

  “That’s what I’m going to get,” Henry added.

  As they ran toward the Candy Kitchen, I followed slowly behind, taking in the salt air and what was left of the warm summer sun. In my pocket I found two remaining tickets. I was about to call out to Henry, to ask him what we could get for two tickets, but at the last second, I changed my mind. Instead, I pulled out my wallet and tucked the tickets inside.

  Although I knew the road we would travel would be far from easy, somehow I believed it would lead us back to Funland.

  Henry’s Favorite Things

  • Taking pictures

  • Eskimo and butterfly kisses

  • Flying kites

  • Getting out of the hospital

  • Playing Skee-Ball

  • Playdates and parties with his cousins

  • Meeting President Clinton

  11

  PLAN B

  Henry, Jack, and friends—lemonade or a cookie, 25¢

  The Strongin Goldberg Family

  As we readied ourselves for the fight of our lives, my brother, my sister, and the Ladies of the Pines, most of whom I remained close to, were planning for the superhero sendoff party of the century. On the afternoon of June 11, the day after our last Funland trip, and three days before we were leaving for Minnesota, Allen, Henry, Jack, and I walked into Temple Sinai’s social hall.

  I had heard that there had been a lot of planning involved, but when I pushed through the doors, I was overwhelmed. There were Batmans everywhere. Not only on the centerpieces and the cake (made especially by one of Henry’s favorite people, Max, from our local ice-cream parlor) but standing along the walls, sitting on chairs, and twirling hula hoops on the dance floor. Everyone was dressed as a superhero. Our good friend Mike Rosenberg, a Washington attorney, was dressed as Batman. Michael Barr, who would later go on to work in the White House, was Robin. As soon as they saw Henry and Jack, who were themselves dressed as Batman, they ran to them, lifted them up high above their heads, and flew them around the room. The boys shrieked with excitement and the entire crowd whooped and hollered.

  It was an amazing day. More than a hundred family, friends, neighbors, teachers, and doctors came dressed as superheroes as a tribute to Henry and his lifelong obsession. Of course, Bella was there. She didn’t have to dress up as a princess to be one in Henry’s eyes. Ari, Simon, and Jake came, as did all of Henry’s cousins, aunts and uncles, grandparents, school friends, and soccer teammates. His pediatrician was there, as were his teachers Liane, Denis, and Elaine. Henry’s classmates presented him with a special Batman pillowcase that they decorated and autographed. Jugglers, magicians, balloon twisters, and plate spinners entertained the kids as they posed for pictures with Batman and Robin, and celebrated the marvels of childhood.

  There were gifts for Henry and big hugs all around. My favorite moment, perhaps, was when I saw my dad hand Henry a brand-new shiny silver-and-gold plastic sword. This wasn’t just any sword. This was the sword that Henry would carry with him to Minneapolis, to every appointment and every procedure during his first week. I knew this was a big deal, not just for Henry, but for my dad. He is certainly not the type of guy who likes to shop. Rather, he leaves that to my mom, while he is out fishing, flying over Chesapeake Bay, or relaxing by the fire with a good book. But he had gone alone to the local toy store and picked this one out himself. I knew that it was his way of letting Henry know that regardless of the distance between them, his Papa Sy would be there with him every day, prepared to fight alongside him, and totally ready for battle.

  As the evening wound to a close and the younger, wide-awake superheroes were pulled reluctantly toward the parking lot by their older, tired superhero parents, I was filled with joy and gratitude. So many people knew, understood, and loved my son. My brother Andrew came to stand beside me. We watched Henry as he stood with Jack, Bella, Ari, Simon, Jake, and his cousins Michael, Rachel, and Emma, poring through the goodies that had been hidden inside the piñata. They showed one another what they had, and made a few exchanges. He looked so happy—and perfectly healthy. I knew that what was happening on the inside made what we were about to do essential, but that didn’t make it any less difficult or confusing.

  Andrew put his arm around me. “You know what I think, Laurie?”

  “What’s that?”

  “Batman should wear a Henry shirt.”

  The next morning, Henry announced that he wanted to see Bella one more time before we left for Minnesota. I called Liane and secured a date. Within hours, Bella arrived. She was dressed in a matching flowered tank top and shorts. Henry wore the new Batman Beyond T-shirt that Bella had given him at the superhero ce
lebration the day before. Bella brought a camera with her, which she put to immediate use.

  It was hot and sunny, a perfect afternoon for soccer on our front lawn. Bella and Henry teamed up against Jack and his friend Noah.

  “Henry, are you the MVP on your soccer team?” Liane asked after Henry dribbled right by Jack and Noah and scored the first of many goals.

  “Yeah, because I eat a lot of food,” Henry replied as he passed the ball to Bella, who dribbled it onto our neighbor’s yard and into the bushes for another goal.

  Jack and Noah were no match for Henry and Bella, who continued to score on each drive down the eight-foot-long field.

  After the game ended, Bella went inside to get her camera. Henry put on his Batman cape for a few final shots.

  I gave Liane our address in the hospital’s bone-marrow-transplant unit so Bella could keep in touch. As they were preparing to leave, Bella reached into her mom’s bag and pulled out a card that she had made for Henry that simply said “Luv, Bella.” Inside the card were two small, soft M&M’s figures, one blue, the other green. Compliments of two small pieces of velcro, they were holding hands.

  “Look, Mom! Look what Bella gave me!” Henry exclaimed. He ran over to me and whispered something in my ear. It was important.

  “I want to give Bella a hug,” he explained.

  “I think she’d like that,” I whispered back.

  He inched away from me and toward her. Liane saw what was going on and gently pushed Bella Henry’s way.

  Henry and Bella embraced. For the last time that year.

  The night before we left for Minneapolis, Henry and Jack became taken with fireflies. Their interest was sudden and overwhelming, and they spent a great deal of time running around our front yard, catching one firefly after another. Each catch was a victory for my sons, though not for the bugs, many of whom gave their lives in the clumsy, innocent hands of my three- and four-year-old boys.