Saving Henry (23 page)

I cried when I finished reading the e-mail. It was exactly what I would have written, I thought, were I the one with this news to share.

The next day, Sharon left me another message. “I can't stop thinking about you,” she said on my voice mail. “This never would have happened to us were it not for you and Allen. It's as simple as
that. You are the mother that I want to be to my kids. You do everything. You provide laughter and safety, fight so hard, and give so much love. I hope you are well, and that Henry is getting better.”

 

H
enry was not getting better.

After the contagious period was over, our life returned to the state it was in prior to September 18, when the fear of the pox started. Two weeks later, our respite was interrupted by a fever and infection that sent Henry to the hospital. He had a recurrence of MRSA (methicillin-resistent Staphylococcus arueus, or staph infection) at the site of his central venous catheter, through which he continued to receive intravenous medication, fluids, and blood transfusions. This infection develops in hospital patients with weak immune systems who have tubes going into their bodies. In other words, in people like Henry. The infection required the doctors to surgically remove the line and replace it with an IV, through which he could receive antibiotics, along with the acyclovir that he was still taking to protect him from the chicken pox.

Midway into Henry's one-week stay at Georgetown, nature took its course and I gave birth to our third son, Joe Strongin Goldberg, at Sibley Memorial Hospital, less than five miles away. Amidst the complexity of our life and in the world, Joe came to us easily. We tried to produce him through a mix of scientific breakthrough and miracle, but instead he showed us that sometimes the best things in life come simply and naturally. So we chose a simple yet strong name for our baby boy.

Joe was born during a scheduled Cesarean section and entered the world in perfect health early on the morning of October 6, 2001. At the time of Joe's birth, my mom was with Henry at Georgetown, Jack was at my sister's house nearby, and Allen was at my side to witness the birth of the baby we had wanted for five long years. Henry
met his baby brother Joe through a video made by Allen, the same way I met Henry six years earlier. Jack and Allen spent their days shuttling back and forth from Henry's hospital room to mine. I lay in my hospital bed recovering from my C-section, holding tight to Joe, desperate to protect him from terrorists, anthrax, chicken pox, staph infections, and all the other crap in the world.

Henry, the real boy who lived
The Strongin Goldberg Family

H
enry was two when he put on his first Batman costume. From that day on, or at least until the time we left for Minneapolis for his transplant, he barely took it off. By that point, he didn't need it anymore. He had achieved superhero status in his own right. Like Batman, Henry's special powers were his strength and intelligence, which he developed through hard work and training. While Batman faced numerous adversaries, including the Joker, Ra's al Ghul,
Riddler, Two-Face, and Poison Ivy, Henry faced only one, Fanconi anemia. Henry was a master of illusion. He made everyone—perhaps me most of all—believe that anything was possible. The only thing that seemed impossible was that inside his beautiful body, every single cell possessed a genetic defect so deadly that one day he would die. Despite all our hope, love, and persistence; Henry's courage; and the best the medical profession had to offer, the impossible happened. Seven years, one month, two weeks and two days after he was born, Fanconi anemia took my son away. A short trip to Minnesota for a tune-up turned into a long farewell.

But it started back home.

 

I
t was August 2002. Jack and I were playing Monopoly in the basement one warm and quiet morning. I landed on Boardwalk and was trying to decide whether to buy it, thereby sealing my victory, or passing on it and going easy on him. All things considered—he was five years old and his older brother, Henry, was so sick—I figured he could use a break. So I passed up my opportunity to make a fortune in real estate, and it was his turn. As Jack rolled the dice, I told him I was just going to run to check on Henry, who was napping in my bed. Ten-month-old Joe was peacefully napping in his crib.

Upstairs, I leaned over to give Henry a kiss on his cheek. He didn't even flinch. I pulled down the covers. His emaciated body was deep purple, his eyes had rolled back in his head, and he did not appear to be breathing. I screamed at him to get up, to breathe, to talk. Nothing. I shook him. Nothing. I screamed downstairs to Jack, urging him to hurry, to come help me. Then I remembered that he was only five, and I hoped he hadn't heard me. I fell onto the bedroom floor. I startled myself and crawled across the floor to the phone and dialed 911, screaming at Henry to wake up, and at the operator that
my son had died or was dying. I didn't know where my husband was, I was all alone, and that he couldn't die now.

“Please help me,” I sobbed into the phone. “Don't let him die. Not now. Not after everything we have been through!”

I hung up, and tried to regain my senses. Allen. He was on his way to the airport to pick up his father, who was returning home from a trip to Alaska that he had taken with Allen's sister Jennifer and her family. It was the first time he had left town since, to all of our great sadness, Allen's mother, Phyllis, had died a few months earlier. We were all reeling from the pain of her death, which occurred in the middle of one of Henry's hospitalizations for yet another transplant complication. With three children, one a newborn, another a healthy five-year-old, and a very ill six-year-old, we had no time to cry. Until now. I wept into Allen's voice mail and pleaded with him to come home. I got up off the floor and stroked Henry's hair and begged him to wake up. Then I remembered Jack and Joe. I needed to find someone to take care of them so I could get in the ambulance with Henry. I couldn't leave them home alone. I couldn't send Henry off in an ambulance alone. I called my neighbor, Cati Bannier, who took advantage of a pause while I gasped for breath to ask if I had put a mirror by Henry's mouth to see if he was breathing. For a moment I stopped to wonder how she even knew an esoteric thing like that. The next thing I knew, her husband, Chuck Lane, was downstairs letting the police in.

 

H
enry's pulse barely registered. We did not have enough time to wait for an ambulance to arrive, so I wrapped Henry's limp, naked body in my bedspread and tried to pick him up, but I couldn't. A policeman carried him downstairs, put him in the squad car, and we raced to Georgetown, only a few blocks away, siren blaring. We
rushed through the emergency room doors—where we had been many times before—and the waiting team of doctors, nurses, and techs grabbed Henry, threw him on the operating room table, stuck a breathing tube down his throat, and inserted IVs that pumped medication into both arms. I collapsed on the floor in the corner of the room.

I didn't know if Henry was dead or alive.

I watched as a chest X-ray was taken and tossed up on the wall. The tech stared in disbelief and exclaimed, “What has this kid had done to him?” From my position on the emergency room floor, I stopped sobbing long enough to rattle it all off, slightly above a whisper.

Tetralogy of Fallot open heart surgery thumb removed bone marrow transplant a lung biopsy two liver biopsies brain surgery two Hickman catheters a G-tube.

Please,
I added.
Don't let my boy die.

I sat on the floor, waiting for Allen. We had spoken at some point, although I could barely recall when. I told him that I didn't know whether Henry was alive. I told him to come, as soon as he could. After we had talked, a nurse had called Allen, urging him to get quickly to the hospital. He would be needed to help me make “difficult decisions.” Allen heard this as good news. At least Henry was still alive. Allen voiced concern that he might be stopped by the police since he was driving 90 mph in a 45 mph zone and passing cars on the left and on the right. The nurse said that wouldn't be a bad thing—the police would get him to the hospital even faster.

Allen arrived. Henry was unconscious, on a ventilator, his life still in jeopardy. Hours later, Henry was transferred to a room in the pediatric intensive care unit where he lay lifeless but for the ventilator pumping oxygen into his lungs.

Allen came close to me, and I saw the anguish in his eyes.

“I have to tell you something,” he whispered, his voice cracking into pieces. He told me, confided in me, that although he was sure that he had given Henry the right dose of morphine before heading out to pick up his father—he was as diligent a nurse to Henry as I was—he was now unsure of himself and possibly, even probably, he thought this was all his fault. He was to blame. My reassurances fell on deaf ears. I couldn't talk him out of that fear then, or today.

The next day Henry woke up surprised to find himself in the hospital surrounded by doctors, nurses, and connected to a bunch of machines. He took in the scene.

“What happened?” he asked.

The sound of his voice and the alertness in his eyes told me all I needed to know—that his brain was in as good working order as ever. I told him the exciting tale of how his heart had stopped briefly and how we got to ride in a police car with the siren blaring, and how his superpowers had been activated and he started breathing again. I balanced my desire to tell the truth while disguising the death-defying nature of the incident. I didn't want him to be scared to take a nap again for fear he would never wake up.

Henry listened intently and said with a smile, “I'm like Harry Potter. I'm the boy who lived.”

 

I
don't know if it was my maternal instinct, the doctors' skills, Henry's resolve, or just plain luck, but Henry did not die that day.

In fact, he started to feel better. A few days after surviving this experience, Henry's physician, Dr. Shad, stopped by his room on a Friday evening, on her way out for the night.

“Have a good weekend, Henry,” she said with a smile.

“That's easy for you to say,” he responded. “How can I have a good weekend when I'll be here in the hospital the whole time?”
After a brief pause, he added, “I have an idea. You know what will make it better? My friend's having a birthday party. Maybe I could break out of here for a while and head over there.”

Dr. Shad, one of Henry's most compassionate doctors, looked carefully at him and then at me. “That does sound fun,” she said. “Do you think you can keep your mask on the whole time?”

Henry's smile grew larger as he furiously nodded his head.

“And do you promise to wash your hands really, really well?”

Two days later, Henry was at his friend Rachel's sixth birthday party. With all of his friends from school, he ate cake, helped open the gifts, and ran as fast as he could—which was a lot slower than all the other kids—through an obstacle course created for the occasion. When he finished, everyone high-fived him. He left with his goodie bag and filled with renewed determination to spend less time in the hospital and more time at parties.

Two weeks later, Allen and I drove him and Jack to school for their first day in first grade and kindergarten respectively. Henry showed Jack around the kindergarten classroom, introducing him to the teachers and classroom turtle, Speedy, and then hurried off to see all his friends.

Henry started first grade with much enthusiasm. “At school I like to go to PE,” he wrote in the journal he kept in class. A later entry had a picture of a pumpkin that Henry had taken with his new Polaroid camera. He signed it “Harry.” Like millions around the world, Henry loved Harry Potter and felt a special connection to another boy who had survived against all odds.

Henry's note under the photo read:
THE BOY WHO LIVED TOOK THIS PICTURE.

 

W
ithin days, Henry was hospitalized with yet another transplant-related complication. We had all along sent Henry and Jack to a small
private school where everyone knew one another and the school made it a priority to protect Henry. The parents of kids in his class had agreed to call us if they observed any signs of illness in their children so we could keep Henry home from school. Obviously, there was a risk that a child could have the flu or chicken pox before the parent realized, but we were determined to weigh that risk against the clear benefit to Henry of going to school and being with friends.

Not long after this hospitalization, Drs. Shad and Wagner agreed that Henry's health had deteriorated to a point where he could no longer attend school. His immune system was not strong enough to fight off the common germs that are a natural part of the school environment. Henry spent the month of October in isolation at home, with the exception of sneaking out to see Bella the evening of his seventh birthday.

Something just didn't seem right to me. It had been more than two years since Henry's transplant, and he still needed blood transfusions. That fall, his inability to grow and thrive had required a feeding tube into which I administered all his nutritional needs. But despite the fact that he was “eating” plenty, he was shrinking in size. In 2002, Henry had gone from wearing size 7 in the spring to 6 in the summer, and 5 and then 4 by his seventh birthday in October. While Henry was still bigger than our baby Joe, Jack towered over him. Throughout the year, rarely had more than a week gone by without an infection and hospitalization. We never even bothered to unpack our bags, as we had come to expect late-night fevers and dashes to emergency rooms. Our optimism kept us going to the beach or on vacation when we could, so we got to know the emergency room staff at hospitals in New York City; Lewes, Delaware; and Fort Myers, Florida. I had long since given up going to the office, settling for working online for my required twenty hours per week to keep our health insurance, which protected us from financial ruin. Allen didn't bother to look for a full-time job anymore,
since he couldn't even count on being able to show up for an interview. Henry's medical-bill folder went from filling up a desk drawer to occupying three large storage tubs.

But none of that led me to conclude that it was time, yet again, to return to Minnesota. Instead, it was my conversation with Henry early one morning in November 2002, when he asked if we could talk about the good old days when he was three. He wanted to talk about his dates with Bella especially, like the time he went to her ballet recital with her family and brought her a bouquet of flowers. The only other time I remember having a conversation like that was with my ailing grandmother just before she died. We laughed as we remembered the good times in an effort to stave off the reality that her life would end at any moment. That was the last time I saw her.

Allen and Henry went to Minnesota first. We decided that I would remain home with Jack and Joe, so Jack could go to school and Joe, who was still a baby, could avoid the harsh Minnesota winter weather and hospital-borne germs that could pose a threat to his young immune system. Dr. Wagner would examine Henry and let us know whether my instincts were on to something or if, as everyone else believed, this was just another bump in Henry's rocky road to recovery. Dr. Wagner wanted them to stay a few days.

Allen viewed this as a boys' getaway, so upon arriving in Minneapolis he started planning the fun. He bought two tickets to a college football game between the University of Minnesota and my alma mater, the University of Michigan. Over the years, I had gotten everyone hooked. Henry and Jack were proficient at yelling “Go Blue!” from an early age. Within days of their arrival, Henry got a fever and was hospitalized, and Jack and I flew to Minnesota. One week later, my mom and Joe joined us, and we all moved into the local Ronald McDonald House. Needless to say, Allen and Henry never got to see the inside of the Metrodome on that trip.

The Get Well Card Helper in both Henry's and Jack's classes
got to work, and while we were in Minneapolis that fall, Henry and Jack received many packages from school filled with pictures, cards, and notes from friends and teachers. “Henry. I love you. I miss you very, very much. Please come back to school soon,” said Emily. This sentiment was echoed by kids in nearly every grade of Henry and Jack's small Jewish day school in Washington.