Saving Henry

by Laurie Strongin

  For the next six months, we waited. Claudia Hughes was fighting for her life and Dr. Hughes was at her bedside. He also wanted to spend time understanding what had happened with our case to see what he could learn to improve the outcome the next time. In the meantime, we continued to organize bone-marrow drives and to try to convince the insurance company to pay for our PGD attempts. Initially they refused to cover PGD on the basis that they didn’t cover treatment for infertility. When we pointed out that our two children were proof that we weren’t infertile and that they should cover PGD as a bone-marrow donor search, they reiterated their refusal to cover treatment for infertility and added that they cover only donor searches outside of the family. Despite the letters we submitted from our doctors who, among other things, explained that the cost of a transplant with the marrow of a stranger far exceeded (perhaps by more than 100 percent) the cost of one with the perfect sibling donor produced through PGD, the insurance company steadfastly refused. It was as if they had never heard of PGD. I found that if I submitted my bills for everything except the $250 quarterly fee for frozen embryo storage, sometimes they would cover blood tests and sonograms; other times, the cost of the anesthesia. It didn’t amount to much, but we would take what we could get, and our extended family made up the difference, for which we are eternally grateful.

  Despite the devastating results, the progress we had made in our second PGD attempt combined with the fact that we had no other options solidified our belief that it was well worth waiting for a third try when Dr. Hughes was ready for us. In the meantime, we were hardly going to sit around and let life pass us by. In July 1998, the four of us, along with my parents and Allen’s parents, traveled to a small fishing village in Galicia, Spain, to attend the wedding of Allen’s best friend, Bill Delaney, to his fiancée, Cristina Alvarez.

  From the moment we stepped onboard the flight to Spain, we got the vacation we had been hoping for and so desperately needed. Henry spent the six-hour flight running up and down the aisles, making friends and on occasion getting someone to play Go Fish with him. Compliments of the pilot, who was a friend of Cristina’s, my dad—who, in addition to being a lawyer and sailor, is also a pilot—was invited to sit in the cockpit for the takeoff from Dulles Airport. The trip would prove to be filled with similar treats for all of us.

  Laguardia, the town where we stayed, was postcard-perfect. It is tiny and hilly, with narrow streets that draw very few tourists. Nobody spoke a word of English. Along the harbor were rows of small restaurants with langostinos and fresh catch hanging in the window like the ducks beckoning diners in Chinatown.

  It was sunny and warm, and in the afternoons, we’d all go swimming in the cool, blue waters of the Atlantic Ocean, waiting for the fishermen to pull their boats into the little harbor. They’d carry the day’s catch into an airy brick building and pour their piles of still-squirming fish—squid, octopus, and so many things we couldn’t identify—onto the floor. Local restaurateurs and housewives would arrive, carrying their baskets and bags, and cart away their pick. Henry loved it. He’d stoop down low to inspect the strange creatures while Jack, after taking one look at a big octopus, let out a shriek and ran for the door. He would carry a fear of octopus with him for a long time: a pretty significant inconvenience for Jack, a lover of wildlife and marine animals.

  We got lucky one afternoon and came upon a festival at the dock. “See if you can find us,” Henry called from a beautiful wooden boat where he and Jack hid. A balloon artist made Henry and me silly blue, red, and purple balloon hats that we wore as we held hands and sat on a wall above the ocean. The boys played soccer in the courtyard of the Convento de San Benito, a convent that had been converted to a hotel, where Allen’s and my parents were staying.

  One day we joined my parents and the bride and groom on a boat trip to remote islands off the coast of Portugal for swimming and a seafood feast. “No boat, no boat!” Jack cried, an hour into a daylong trip. Henry, a year older and a lot more adventurous, asked the captain if he could wear his hat and steer the boat. The next day, after a lengthy bus trip to the magnificent Santiago de Compostela cathedral in Northwest Spain, Jack cried, “No bus, no bus!” “No (insert transportation mode)” remains part of our family lexicon.

  One evening, the grandparents looked after Henry and Jack while Allen and I joined Bill and Cristina on a drive through the vineyard-dotted countryside. It was a beautiful night as we pulled up in front of what looked like two huge boulders in the middle of nowhere. There were no people. No signs. No thoughts of IVF or PGD. Just an opening in the rocks, and then a serene, romantic restaurant called La Gare. It was in a private home, with a three-hundred-year-old wine press on-site, and the whole place was lit only by candles. The owner, who greeted and served us, grew up in the house. He brought to our table dishes of the freshest, most delicious food I’d ever tasted: roasted peppers, fish, local tetilla cheese. Grapes hung from the lattice above, we drank wine, and as I watched Allen in the shadow of the candlelight, enjoying our friends, looking forward to the wedding, I felt so happy; at peace, even. Those were feelings I wasn’t sure I’d ever feel again. But it stayed with me for those days we had together in Spain—ten days during which I enjoyed my friends, spoiled my kids, and relished the freedom of not having to fight for a thing.

  Henry’s Favorite Things

  • Making snowmen

  • Riding the black panther on the Central Park carousel

  • Going to Disney World

  • Visits from the Happy Heartbeat clowns, including Dr. Jill E. Bean and Dr. Chick ’N Pox

  • When Snow White says, “You must be Grumpy”

  • Riding in Nana’s Mustang convertible

  • Reading Encyclopedia Brown and solving the crime

  8

  DWELLING IN POSSIBILITY

  Henry and Jack ready for battle with Captain Hook

  The Strongin Goldberg Family

  “Jake loves sports,” said his mom, Helaine. “Especially baseball and the Baltimore Orioles.”

  It was the fall of 1998, a few months after returning from Spain, and Allen and I were at parents’ night at the beginning of Henry’s first year in preschool. A group of about twenty-five moms and dads sat on small blue plastic chairs arranged in a circle. I sat next to the cubbies, each carefully labeled with a student’s name and his or her photo, and filled with a change of clothes and some extra diapers and wipes. Henry’s cubby featured a photo of him riding the black panther on the carousel in Central Park. Like many preschool classrooms, the bulletin boards were covered with the letters of the alphabet and colorful photographs. The bookshelves were filled with classics, like The Three Billy Goats Gruff and Where the Wild Things Are. There was a dress-up corner with costumes, and an art table overflowing with paints and brushes, markers, and Play-Doh.

  Henry’s teacher Liane, Bella’s mom, had welcomed us, and suggested that we each share something special about our child to help us get to know one another.

  Susan went next. “Simon loves cars.”

  “So does Ari,” Linda said.

  Perhaps they’ll be friends, I thought.

  I looked around. Everyone was smiling and dressed beautifully. Some mothers were pregnant, and others had clearly lost their pregnancy weight. I had just learned that I was not pregnant following my third PGD attempt, though thanks to the bloating from the months of injections, I looked as if I might be.

  It would soon be our turn to speak. My heart started beating fast and my palms started to sweat. I wanted to grab Allen and run. This was yet another place where we did not belong.

  “Eyal is great at puzzles. He is up to two hundred pieces,” said his mother. “He and Jake have been best friends since they were born, and they are so excited to be in class together,” she added.

  One after another, mothers and fathers shared something wonderful or ordinary about their sons and daughters. As I listened, I wondered which of these children Henry would befriend, and if there was anoth
er mom sitting around the circle who could possibly relate to what I was going through.

  Then it was my turn. I paused and looked around the room. What could I say? The first thing that came to my mind was: Everything. Everything about Henry is special.

  But I couldn’t say that. I couldn’t say any of the things that came to me:

  Henry is brave. He brings a sword with him to the doctor each week when he gets his blood checked. He looks at the nurse, smiles, and says, “Bring it on.”

  Henry has a rare, fatal disease.

  Henry might die before he gets to kindergarten.

  “Henry loves Batman.” This is what I said out loud.

  Henry also loved school. Each morning, he would jump out of bed, excited for whatever the day would bring. He especially loved Circle Time, where he could share lucky pennies, new Batman and Pokémon figures, or feathers and other cool stuff he had found at his grandparents’ home on Maryland’s Eastern Shore.

  On the first day of the school year, Liane and her co-teacher, Denis, sent the first of many notes home. “Henry had a GREAT first day!” they said. He had drawn a picture of himself with his three new friends: Jake, Simon, and Ari, who would become his friends for life, just as their parents would become ours. Henry played baseball with Jake, cars with Ari, and Pokémon with Simon. Often after school, they would go together with their nannies to nearby Macomb Park to climb on the spiderweb or play soccer; to Turtle Park to play in the sandbox, treehouse or the sprinkler; or to one another’s houses for lunch.

  And within days, Henry had met and fallen in love with Bella.

  Henry’s preschool classroom was hardly the only venue where I felt out of place. As Allen and I struggled with what we were going through, and with the knowledge that while Henry seemed fine, his healthy days were numbered, I began to feel so completely alone.

  I tried my best to make it different. I’d do everything I could to make sure I didn’t miss a dinner with the Ladies of the Pines, despite how lousy or disappointed I felt when the evening to meet rolled around. And while I was there at the table with my friends and I laughed along with their stories, I just couldn’t relate. Not to the tales of new boyfriends, bad or lost jobs, money. By this time, our group had expanded beyond the original BOA; while two other women were married, most were not, and only one had a child. Certainly no one else had a child with a fatal disease.

  Nobody ever intended me to feel left out—and it would probably have killed them to know how I felt—but my circumstances did leave me out. All I could think was that I wasn’t fun anymore, that I was a huge bummer, and they probably didn’t even want me around because all I did was bring everyone down. It was such a weird role for me. Prior to Henry’s diagnosis, I had been the crazy one of the group: among the most outgoing, the most up for adventure, the one trying to talk everyone else into removing their clothes and running along the Beltway with me. And now here I was, barely able to add anything to the conversation happening around the table. All I seemed to know how to talk about anymore was my state of desperation.

  But sometimes, despite even the best intentions, people did do or say things that hurt me so much, or, worse, made me feel misunderstood or transparent. During a dinner with some newer friends, the conversation turned to a story about some mutual friends who had just given birth to a child who was ill. I didn’t say anything, I just listened as they talked about how our friends would never be happy again. They vocalized their concerns about what if something like that ever happened to them. It would be terrible. It would ruin my life. I sat there debating whether I should just get up and leave, tell them how what they were saying made me feel, or try to lend whatever insight and experience I had. I opted for the third option and said that although it was true that our friends’ lives and dreams for their child would have to be altered, I bet that they could find happiness. I bet they would learn to change their expectations. They would learn how to get a whole lot of good out of almost each and every day. This was a big step for me, but I didn’t feel as if they heard what I was saying and the conversation steered back to “what if” it happened to them.

  I stopped going to those dinners after that.

  Henry, on the other hand, never talked about his sickness. In fact, he didn’t seem to know he was sick, nor did any of his friends. Their parents found out over time. Once, when we were playing in the sprinkler at nearby Turtle Park, Henry took off his shirt, revealing the long, jagged scar down his chest, compliments of his open-heart surgery. That’s how Simon’s mom, Susan, found out.

  Before or after school once a week, and sometimes more often than that, Henry would visit his doctor and give a couple of vials of blood so the doctor could check to see if he had enough white blood cells to fight germs, or if his platelet count was high enough to ensure that his blood would clot properly if he fell and got cut. Sometimes he would miss a few days of school because he had to travel to New Jersey to visit Dr. Gillio and undergo anesthesia and a bone-marrow aspiration and biopsy to see how his disease was progressing, and how much more time we had prior to his inevitable bone-marrow transplant. Henry wore more Band-Aids than most kids, and from time to time, it occurred to me that the growing number of black-and-blue marks that covered his arms, legs, and face as a result of a low platelet count might raise questions. But he could run and play as well, if not better, than other kids his age.

  I knew that being a good mom to Henry meant letting Henry just be Henry. This meant, for example, that I took a front-row seat as Henry began to engage Jack in an intense training regimen. They started out with wrestling. They wrestled in their bedrooms, in forts they made in the basement, on Allen’s and my bed, and in the backyard. They were like two tiger cubs rolled into a ball, covered with dirt or grass or leaves. As they got older, they turned to swordfighting. In our living room, they each donned a silver helmet, chest piece, shield, plastic blunt-tipped sword, and sheath. Jack started hitting Henry’s sword. “Jack, take the cover off first,” Henry explained. Jack did as he was told, and they got to work. “Huh! Huh! Huh! Huh! Huh!” they each shouted as their swords slapped against each other. “Gotcha!” said Henry as he stuck his sword under Jack’s chest piece.

  While Henry noticed the bruises these activities left on him, he never asked why he had to go to the doctor more often than Jack or anyone else. It was just part of his routine, along with going to school, soccer practice, or swimming lessons. If you saw us eating ice-cream cones at Max’s Ice Cream, or riding the carousel at Glen Echo Park, or playing in the surf at the beach, you would think we were just another happy family.

  Knowing from our third attempt that we could produce healthy HLA matches through PGD motivated us to return to New York as soon as possible to try again. So in November 1998, I traveled to New York for my fourth attempt. A few days after I arrived, Henry, who had just turned three, had an appointment in Hackensack for his semiannual bone-marrow aspiration. This procedure allowed Dr. Gillio to look for any evidence of life-threatening disease like leukemia, which in Henry’s case was a sure death sentence. No one with Fanconi anemia whose bone-marrow failure had led to leukemia prior to having a bone-marrow transplant had ever survived the transplant, regardless of the donor. I raced out of the IVF clinic in New York City, armed with doughnuts, chocolate milk, and coffee, and arrived in Hackensack just in time. I always held Henry as the anesthetic was inserted into his IV, so he could fall asleep in my arms.

  That day we learned that Henry’s platelets had fallen dramatically to 19,000—their lowest ever. When they dropped to 10,000, Henry would need a transfusion. The news threatened to push me over the edge. The drugs I had been taking for nearly a year at this point had ravaged me—physically and emotionally—and I didn’t know if I was strong enough to handle yet another setback in a long string of failures. I never had time to recover from one before the next one struck. While Allen stayed with Henry and Jack, I walked out of the clinic doors and through the winding hallways I knew so well to the lobby.
I got a cup of coffee and settled into one of the big chairs facing outside and took a deep breath, fighting the tears. I hated this. I hated Fanconi anemia and hospitals and needles and drugs. I hated all the waiting for appointments, tests, results, good news and bad news, over and over again. I hated all of it.

  But with the news we’d just heard (19,000—I couldn’t get it out of my head), I didn’t have the option of taking a break or having a breakdown. I didn’t even allow myself to cry. If Henry was just months away from requiring a transplant, then this was nothing compared to what awaited us. Besides, I needed to be the strong one. At this stage, the success of the PGD—and Henry’s life—depended on me. I walked back to the clinic, regaining a little more of my composure and resolve with each step. An hour later, we were at Short Hills Mall drinking chocolate milkshakes, listening to Elvis Presley’s “Hound Dog” on the jukebox at Johnny Rockets, and heavily engaged in Batman versus Power Rangers battles.

  That afternoon, while Allen and the boys took naps, I lay on the couch trying to find peace, and the energy and optimism I would need to make it through my egg retrieval that week. The nurse at Cornell eventually called to let me know that I needed to return to the clinic that very evening for another sonogram to help Dr. Rosenwaks decide whether I should take hCG that night. So by seven thirty p.m., I was back in the car, driving to New York City for the second time that day. Thinking ahead, I brought my pajamas, some Lupron, some Follistim, some hCG, and a bunch of needles, prepared for whatever the night would bring. Allen stayed behind with the boys. It was important to us that they had at least one parent with them whenever possible.

  I met one of the IVF nurses and went up to the clinic to join Dr. Rosenwaks. It was empty, other than the cleaning crew. Dr. Rosenwaks determined that I would have to take the hCG at one thirty a.m. and then return to the clinic for preop, bloodwork, and a sonogram between seven and eight thirty a.m. Too tired to drive anywhere, let alone coordinate logistics, I decided to stay in my aunt and uncle’s new apartment in New York City, which was too small to accommodate my family but was perfect for me. I just needed to figure out who could give me the hCG, an injection that required putting a very long needle into my hard-to-reach-myself rear end. Half-joking, I wondered aloud to the nurse if giving shots to residents’ relatives was part of the doorman’s job description. The nurse gave me quick instructions in the self-administration of subcutaneous shots and drew a target with black magic marker on my skin so I would know exactly where to aim the two-inch needle. I walked through the empty fertility clinic, took the elevator downstairs, and walked back to the apartment in the darkness of the night.