Saving Henry Read online

  Henry’s Favorite Things

  • Tae Kwon Do with Anthony, Vijay, and Mr. Kim

  • The Magic Closet

  • Walkie-talkies

  • Wrestling with Jack

  • Playing bingo

  • Eating brownie batter

  • Linus Van Pelt’s sage advice, “Never jump into a pile of leaves with a wet sucker.”

  13

  DAY 0

  Henry, armed for action

  The Strongin Goldberg Family

  It was hard being in Minneapolis, doing what we were doing, absent everything that provided comfort in our life—our friends and family, our school and jobs, our neighborhood. Our home. Everything was foreign. Initially, we spent lots of time trying to establish routines to create some semblance of normalcy. Allen and I had both secured leaves of absence from our jobs, thanks to the Family and Medical Leave Act, so we could focus every effort on getting Jack and Henry settled in Minneapolis for a four-month stay, and on Henry’s recovery. My mom stayed with us for nearly the entire time. I don’t know if we asked her to come or if she offered, but we needed her to be with us, and she needed to be there. She sacrificed time with my father, my sister and brother, and her other grandchildren, not because she loved us more, but because she loved us. She saw agonizing things that no grandmother should see, but Henry loved that she was there every day. Having lost her own mother as a young girl of fifteen, my mom knew to appreciate the gift of time with someone you love.

  Through a medical insurance benefit that provided a generous housing allowance, we were able to rent a lovely, newly refurbished, two-bedroom apartment in the historic Calhoun Beach Club on the north shore of Lake Calhoun, one of Minnesota’s 10,000 lakes. I was initially hesitant to select an apartment that was nicer and more expensive than our home in DC, and in such stark contrast to the cheerless purpose for being there, but Allen and my sister Abby, who had flown in from Washington to help us get settled, convinced me that we—and Jack in particular—would benefit from a private, comfortable, and peaceful place to live amidst the disorder of our lives. This home-away-from-home was just ten minutes from the hospital and provided easy access to parks, swimming pools, summer camp for Jack, and the peace and beauty of the lake.

  In addition to my mom and Abby, so many members of our family flew to Minneapolis to be with us for welcomed stretches of time. Cousin Hannah, Aunt Jen, and Uncle Dan came, and accompanied Jack and Henry to the Children’s Museum and on the Li’l Shaver roller coaster in Camp Snoopy. The boys fished at Lake Harriet with Papa Sy. They watched fireworks with cousins Emma and Sam, and Uncle Andrew and Aunt Tracey.

  It helped so much having them with us, giving us all something to look forward to after finishing up Henry’s medical appointments. Each day of our first ten days in Minneapolis—when Henry was still an outpatient, and allowed to come home with us in the evenings—we checked additional medical tests off the list and learned a little more about how to balance Henry’s medical needs with the fact that he was still the vibrant, funny boy he had been long before they affixed the HENRY GOLDBERG, DOB 10/25/1995 plastic band to his wrist. Despite everything, Henry still didn’t think of himself as being sick. He was always just getting better. Convinced of the connection between good attitudes and good outcomes, we were determined to keep it that way. We brought our own portable DVD player to the hospital waiting and treatment rooms so that the boys could stay entertained—laughing and reciting lines from their favorite movies—right up until anesthesia was inserted into Henry’s IV and he fell asleep. When he woke up, we resumed the movie or played his favorite music or walked to the vending machine armed with loads of quarters for Pringles and M&M’s.

  At the end of each day, we’d all gather back at the house for takeout dinners and games, or we’d go out for ice cream or to the movies. While the adults were, of course, well aware of what was at stake, none of us talked about it. What was the point? We had chosen the only real choice we had, and the only place to go was forward.

  Day 0.

  This was how Henry’s doctors referred to July 6, the day of the transplant: the day on which Henry’s life would begin anew. Seven days prior to this, on June 29, Henry was admitted as an inpatient on the bone-marrow-transplant unit, and we passed the point of no return. Soon after Henry was settled into his new room, he was sent down for surgery, where a doctor inserted a central venous catheter into a large vein in Henry’s chest just above his heart. This would enable doctors and nurses to administer drugs and blood products painlessly, and to withdraw hundreds of blood samples without continuously inserting needles into Henry’s arms or hands.

  On Day minus 6, Henry, covered in temporary Pokémon tattoos, held his blanket and smiled as he was strapped to a table and submitted to total body irradiation while listening to and singing along with his favorite Disney music, including “Heigh-Ho,” “The Bare Necessities,” and “I Just Can’t Wait to Be King.” The radiation therapist, intent on doing his very precise job, had to remind Henry to sit still and resist the urge to move to the beat of the music. Day minus 5, minus 4, minus 3, and minus 2 featured chemotherapy, which worked in concert with the radiation to destroy Henry’s existing bone-marrow cells and to make room for the new marrow. Day minus 1 was a day off, and we watched movies in his room.

  Allen and I, meanwhile, had enrolled in a total-immersion course in an entirely new language: cyclophosphamide, anti-thymocyte globulin, cyclosporine, heparin, and bilirubin. We went from signing consent forms for preschool field trips to the zoo to those allowing doctors to give Henry drugs that could cause nausea and vomiting, diarrhea, bleeding, liver damage, learning disabilities, infertility, and difficulty breathing. Most of these side effects are, unlike death, temporary and reversible, so we stayed focused on our ultimate goal and signed the forms.

  The colorless, quiet, sanitized, isolated hospital room was a shocking difference from where we had been just two weeks earlier: school, Funland, a Dolphins soccer game, and a huge, crowded going-away superhero extravaganza. Instead of the sounds of kids laughing or screaming with delight, the only noise was the constant swishing and beeping of Henry’s IV pump or the squeaking of the nurses’ shoes. Instead of colorful classroom walls featuring kids’ artwork or Henry’s bedroom filled with soccer trophies and Pokémon posters, the hospital room walls were white and bare. Replacing the scent of fresh popcorn or cookies or cut grass was the antiseptic smell of clean. We had traded everything for almost nothing at all.

  Initially the really bad times were few and far between, and we did our best to create an upbeat environment for Henry in Room 5 of Unit 4A, where he would remain for a minimum of one month in nearly total isolation—an eternity to a four-year-old. One of the first things we did was to decorate the outside of his hospital room door with pictures of Henry in his Batman costume, Henry with Jack, Henry with Bella, and a photo of our family at the beach, to show the doctors, nurses, and technicians who was living on the other side. Inside, we managed to turn Henry’s room into a playroom for one, featuring a blow-up Batman chair, basketball hoop, soccer goal taped to the door, and Pokémon and Michael Jordan posters.

  On one of the first days, Henry received an urgent letter. It was from our neighbors in Washington, and it read, “Hey, Batman! Calvert Street misses you and needs your help! The evil villains Catwoman and the Joker have attacked our small neighborhood. We will try our best to hold them off while you undergo your top-secret transformation. We miss you and your trusty sidekick Robin, and hope you come back soon!”

  Henry also received a letter from President Clinton, who wrote: “I recently heard that you are going through a difficult time, and I want you to know I’m thinking of you. I’m impressed by the courage you’ve shown in facing such a tough personal challenge.”

  Though we were sure that Henry had what it took to win the battle, Allen decided to take one particular caution, just in case. On the second day there, Henry woke up to find a huge black-and-yellow Bat Sig
nal painted on his window, letting his hero know that Henry could use some help.

  “Wow!” Henry yelled as he carefully pulled the IV pump to which he was attached closer to the window to get a better look. “That’s so cool!”

  Henry took everything in stride, managing, somehow, to find the cheer in his experience. When his hair fell out, he looked in the mirror, smiled, and exclaimed, “Awesome! I look like Michael Jordan.” It was far less easy for me. I had always taken solace in the fact that he looked so “normal” and healthy. That made Allen and me less scared about the idea that “underneath,” he was really sick. As I looked at him rubbing his bald head in the mirror, I smiled and told him he was right. He did look cool. And handsome. But inside, I was in knots. I’d rather have avoided that truth.

  Thanks to my brother Andrew and his family, though, Henry quickly had a whole complement of cool hats and bandanas to wear. And thanks to Jason, the hospital unit’s child life specialist, a bright blue-and-green Franklin punching bag with the word “Pow!” printed on it hung directly above Henry’s bed. As yet another day’s worth of chemotherapy dripped from the IV bag through the plastic tubing and into his body, Henry donned his two bright red boxing gloves, each of which repeated “Pow!” held one fist in the air, and exclaimed Muhammad Ali–style, “I am the Greatest!”

  The night before Henry’s bone-marrow transplant, Day minus 1, I sat in his hospital room, unable to sleep, reading magazines that don’t challenge the mind to do more than pass time. In one, I noticed Martha Stewart’s calendar. Her job that day, Thursday, July 6, 2000, was to “clean freezer and refrigerator.” On Henry’s calendar that day, the word “transplant” appeared. Just one word with so much potential. Somewhere in the world, our donor’s calendar read something equally meaningful. How I longed to spend a day, even an hour, inspecting the “use-by” dates on the food in our refrigerator.

  Transplant day was considered Day 0. The hope was that by Day 21, the new bone marrow would engraft (this is when the bone marrow starts to produce new, healthy white blood cells, red blood cells and platelets), and Henry and his immune system would be on the road to recovery. Day 100—a critical milestone in the world of bone-marrow-transplant patients—seemed like a lifetime and a dream away. On Day 100, if we were among the lucky few, I figured we would go into the hospital and the doctor would remove Henry’s central line, discontinue all his medicines, and send us back home. It would mean that for the first time in his life, my son would be out of grave danger.

  The stem cells for Henry’s transplant came compliments of a total stranger, and they arrived in Henry’s room shortly after eight p.m., nearly five hours ahead of schedule. Allen was at the apartment with Jack, and so the moment belonged to me, Henry, and the stem cells of a woman I didn’t even know. I wondered where she lived, if she was Jewish, if she looked like me. All I knew was that the donor was a woman, a kind and generous woman somewhere in the world, who had the ability to undo the damage that Allen’s and my genes had wreaked on Henry. Earlier that morning, I had been obsessively checking the weather conditions in Minneapolis and every major city in the country, terrified that the stem cells would be diverted or destroyed on a plane. But the doctors confidently assured me that they would arrive safely, something they knew to be true because, unbeknownst to us at the time, Henry’s donor was a nurse from Minnesota. She was donating her stem cells for Henry in a room just down the hall. According to the rules of the National Marrow Donor Program, both her identity and Henry’s would be kept confidential, although we could—and did—communicate by letter through our donor-search coordinator. If both parties consented, we could meet following the one-year transplant anniversary.

  From 8:15 to 8:30 p.m. Central Time, I lay down next to Henry in his hospital bed and held him, careful that my hug wouldn’t interfere with the IV line pumping the stem cells, and a world of possibility, into him.

  “Henry, remember how I told you about your new blood?”

  “Yes.”

  “Well this is it,” I told him.

  “Great,” he said, opening a Nestlé chocolate Wonder Ball and reaching to the bedside table. “Want to have a Pokémon battle?”

  He grabbed Charizard and I grabbed Pikachu.

  “Charizard, I choose you,” said Henry.

  “Pikachu, I choose you,” I replied on cue.

  “And with a fire spin, a growl, and then the powerful flame thrower, Charizard wins the battle,” Henry said as the stem cells flowed into his body. From there, they had one single, critical purpose: to find their way to Henry’s bone marrow, where they’d establish a home and start to produce new blood cells.

  I had been told these fifteen minutes would be uneventful. They were anything but. As I lay there next to Henry, I thought, again, about the one thing that had been plaguing me since his diagnosis: We had given him Fanconi anemia. While I never blamed myself or Allen, or either of our mothers, who had passed it on to us, I believed that PGD would enable us to take it away. We tried everything to make that possible. But at the moment of the transplant, as I held my son while a stranger’s stem cells dripped slowly into his body, I felt at peace. For the first time since I had heard the words “Fanconi anemia,” I relinquished control, accepting that it was now out of my and Allen’s hands. I held Henry tightly to me, believing it would all work out. Knowing that Henry could survive.

  Henry’s Favorite Things

  • Cracking open the Batman piñata each year at his birthday party

  • Joker’s Child in Fair Lawn, New Jersey

  • Vending machines stocked with Pringles and Skittles

  • Electric blankets

  • The Glen Echo (Maryland) carousel

  • Hitting Wiffle balls off our front porch

  • Going to kindergarten

  14

  A NEW BEGINNING

  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 so
me 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.