As I was reading and printing and panicking and waiting to hear from Allen and Jack, Dr. Gillio got on the phone. I described Jack’s symptoms. Since Dr. Gillio was more than two hundred miles away in Hackensack, he couldn’t make a diagnosis. He did, however, tell me about the availability of a vaccination called VZIG (varicella-zoster immune globulin) that held the promise of protecting Henry from getting the chicken pox if in fact Jack had it. Henry would have to get vaccinated within ninety-six hours of exposure, before any symptoms appeared. After he got the VZIG, we would have to wait ten to twenty-one days to see if it worked. During that time, Henry could take IV acyclovir, an antiviral medication he had taken for a year post-transplant, which should strengthen his ability to fight the disease. To top it off, in the event a vaccination and yet another IV drug weren’t enough, Henry would need to avoid Jack for a week or so, just to be completely safe.
If Jack had the chicken pox, then he had been contagious one or two days before the rash appeared, which included the day before, when they made forts in their bunk bed and played for hours in each other’s sheets and blankets. The reality is that we didn’t know if Jack had the chicken pox, and wouldn’t know for certain before the ninety-six-hour window was shut. On the phone, Allen and I weighed the risk of getting the vaccine if Jack didn’t have the chicken pox (yet another shot) versus not getting the vaccines if he did (possible death).
I could barely speak. “After surviving heart surgery, brain surgery, and a bone-marrow transplant, he couldn’t possibly die of chicken pox, could he?” I finally managed.
We hung up and I called Dr. Aziza Shad, Henry’s doctor at Georgetown’s hematology/oncology clinic, to see if they had a supply of VZIG, which they did. I asked them to prepare the dosage and to call Corum, our home health-care delivery service, and ask them to send us a supply of IV acyclovir. I called Allen again, who had just sat down with Jack in the sick-kid waiting room at the pediatrician’s office. They hadn’t seen Jack’s doctor yet, but Allen agreed with me that we’d better get Henry to Georgetown so if the pediatrician had any question at all about the possibility that Jack had the disease, we could get Henry vaccinated right away.
“It looks like you’re going to have to get a shot today to make sure you don’t get the chicken pox,” I said to Henry, while we played chess.
“Oh, man,” he said. “That’s no fun.”
“Well, let’s get it done now, so we can get to the toy store before it closes. I think this calls for a special treat, don’t you think?”
He was so used to getting stuck with needles by that time that he was generally OK with it, particularly if it would lead to the acquisition of a new toy. We got in the car and drove to Georgetown so we’d be there before the hematology/oncology clinic closed for the day. While we were on our way, Allen called to say that the pediatrician suspected that Jack had a mild form of chicken pox, the kind you get if you fall outside the 70 to 90 percent likelihood that, once vaccinated, you won’t get it at all.
“Jack’s being sent to a pediatric dermatologist in the same building to get a second opinion,” Allen told me.
Just as I hung up, a horrifying thought crept into my head. I was more than eight months pregnant. Though I had somehow failed to absorb the information at the time, I remembered that when I was searching the Internet an hour earlier for any information about the most serious risks associated with chicken pox, I saw something about pregnant mothers and babies and birth defects and death. I called Allen back and asked him to go back and ask the pediatrician what we needed to do to protect our baby and me.
My mind was flooded with another set of questions: Did I have to avoid Jack and Henry? Did I need to get the same vaccination as Henry? Was it safe to get it so far along in my pregnancy? Did we need to give the baby the vaccination as soon as he was born? Was I protected since I’d had the chicken pox as a kid? Was the baby protected for the same reason? Was Jack going to be OK? Was Henry going to die? Were things ever going to get easier? Could I take even one more day of this shit?
But Henry was sitting in his car seat right behind me, so I didn’t ask any of them. Instead, Henry and I talked about which superhero was cooler—Batman or Batman Beyond. I preferred the old-school style, but Henry made a good case for Batman Beyond. “Mom, his Batsuit is so cool. He can shoot batarangs and he can fly. Come on!”
For the first time in my life, I was afraid of Jack. Henry and I arrived at the clinic at Georgetown’s Lombardi Cancer Center just before closing time, where we learned that the VZIG was actually two shots, not one. I called Allen for an update on Jack. Allen was in with the dermatologist, who was fairly sure that Jack had the chicken pox, but could not say definitely without a blood test and skin biopsy, which involved needles and stitches—the equivalent of torture to Jack.
Thankfully, the results wouldn’t be available in time to help us decide whether to treat Henry, so we could spare Jack. If we had more time, we would have had to balance the pain and discomfort to Jack with the consequences of not doing it at all. The treatment for Jack if he did or did not have the chicken pox was essentially the same—oatmeal baths, Benadryl, calamine lotion, or none of the above, depending on how bad he felt. So, it wouldn’t feel so great subjecting him to a blood test and skin biopsy, which we knew from experience with Henry involved using something that looks like a small apple corer to extract a chunk of skin, leaving a hole that required stitches. No matter how many times Jack had sat and watched Henry get poked and stitched up, he had never warmed to the idea of having to be the patient himself.
“Let’s just get it over with,” Henry said. He had quickly decided that it would be best to get both shots at the same time and just get it over with, so we could get to the toy store before it closed. “Two shots, two presents,” he said. “And one for Jack, too,” he added.
So Henry’s two nurse friends, Suzanne and Kathy, each armed with a shot, stood next to me and Henry and we all did the count-down: “Five, four, three, two, one. Go!” On the way out, Suzanne asked Henry if he’d go on another date with her to Cactus Cantina. “How about tomorrow?” he answered.
And so the decision was made. We would have to wait through the twenty-one-day incubation period to see if it worked. In the meantime, Henry had scored a date out of the deal.
Dr. Shad explained that I wasn’t at risk since I’d already had the chicken pox, and neither was the baby as long as he remained in my body. Allen got similar information from the pediatrician and Jack’s new dermatologist. I wasn’t due for a few weeks, so we still had time to get more information about the risk to the baby once he was born.
As promised, Henry and I headed to Tree Top Toys, a local toy store, to get two treats each for Henry and Jack. Henry picked the card game Skip Bo and a spin-art kit. He thought Jack would like a new several-hundred-piece Knight’s Kingdom LEGO set. Henry and I returned to an empty house. I packed a bag for Allen and Jack, and left it along with the LEGOs and a love note on the front porch. Allen and Jack picked up the goods and relocated to my parents’ apartment. They planned to stay there for the next five days while Jack was contagious and, thus, the most significant threat to Henry’s life. At some point during the waiting period, I would have a baby, and we and our family and friends would find a way to make it through the chaos that continued to define our life.
After Henry fell asleep, I sat alone in the dark in our kitchen and turned on the television, only to learn that in addition to the horrifying terrorist acts that had occurred in New York and Washington and those that may yet occur, potentially lethal letters containing anthrax spores were circulating throughout the country with the potential to deliver death right through our mail slot. Within days, neighbors throughout Washington were sealing their mailboxes, preferring to collect their mail in plastic bins outside their homes, which they would go through wearing plastic gloves.
I didn’t know what to be scared of anymore.
I stayed home from my job, took my prenatal vitamins
, did spin art, and played hundreds of games of Skip Bo, Uno, and Blink with Henry. Each afternoon I looked through the mail spilling into our foyer, convinced that no one would be that heartless.
Three days later, Allen and I couldn’t take the separation any longer. Jack’s chicken pox—or bug bites or rash (we never did find out definitively what he had)—never got any worse than they were the first day we noticed them. In fact, they were smaller. The itching was gone and the blisters never came. So Allen and Jack moved into our basement, where they ate their meals, watched movies, slept in sleeping bags, and tried to make a good time of it for another few days. Henry and I lived upstairs, and we all spent a lot of time shouting up and down the basement stairs. After the kids fell asleep, Allen and I met in the kitchen in front of the television. We watched the firefighters search for bodies, bereaved family and friends walk the streets of New York with fliers featuring pictures of lost loved ones, and reports of yet another anthrax-laden letter. We held hands across the table, but we didn’t speak. We were too worn out and overwhelmed to say much of anything.
I awoke to an e-mail from Sharon in Israel. She was writing to share with us, Mark Hughes, Arleen Auerbach, and Zev Rosenwaks the most wonderful news: Their third PGD attempt had worked. She was pregnant.
Three long years of struggle, living under the shadow of death have finally reached a dramatic turning point for our family. We will wake up tomorrow morning with renewed hope. This is a celebration of scientific ingenuity, state of the art medicine, and the most profound expression of human collaboration. Through this long journey yet to be continued, Yavin and I were always guided by a combination of ideas:
A focused attitude of doing everything possible regardless of geographic, financial, physical and emotional difficulties, and a deep understanding of the word “hope” and its role in our life. We always felt that although the outcome of this effort would be crucial, the road we took and the decisions we made along the way would help us get through life in one piece even if we fail. This sober point of view makes us especially happy and relieved today, knowing that thanks to all of your work and effort our future seems to be so much brighter.
Our warmest thoughts are with our very special friends—Laurie and Allen—who not only paved the way in a very practical manner, but also reminded us again and again what real optimism and determination are all about. The Nashes, whom we have never met nor spoke to, helped us believe this can really work when we were confronting obstacles along the way.
We send our deepest thanks and appreciation halfway around the globe for all that you have done for our family, and a special thanks in advance on behalf of all those families that will be fortunate enough to be as lucky as we were.
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.”
Henry 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’s Favorite Things
• Watching Looney Tunes cartoons
• Chasing Snow White around Disney World
• Going to birthday parties
• Whistling with acorns
• Eating Rolos
• His number 23 Michael Jordan jersey
• Pumpkin patches
18
FATE
Henry, the real boy who lived
The Strongin Goldberg Family
Henry 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.
It 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 w
e 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.
Henry’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.
Saving Henry Page 20