Saving Henry (8 page)

 

F
inally, two months later, in December 1997, while on a family vacation in Florida, Allen gave me my first shot of Lupron, signaling the start of our experiment with PGD and our battle to save Henry's life. Everything was in place: Our doctors had the technology and the team ready to successfully execute the procedure, and our families had offered to provide the financial support that the insurance company had flatly refused. Despite being weary from the fight, Allen and I were more than ready to see where the power of our love combined with the possibilities of science could take us.

By this time, Henry's blood tests showed that his health was beginning to fail. His platelets—the blood cells necessary for clot
ting—were at 71,000, far below the normal count of 150,000 to 400,000. His absolute neutrophil count, an indicator of his ability to fight infection, was at 800, far below the desired level of 5,000. Henry's diminishing blood counts didn't negatively affect his day-to-day wellbeing, but they served as a worrisome reminder that we were in a race against time.

Therefore, when the time came two and a half weeks later to relocate for several weeks to Weill Cornell Center for Reproductive Medicine and Infertility in New York City to begin our first IVF cycle, we were more than ready to leave our home, jobs, school, and friends in Washington. Both of our employers gave us permission to work remotely from our hotel in New York. I was so excited about what we were going to do that I wanted to tell the lady in the newspaper circulation department why I was putting my paper on hold with no restart date, but I stuck to the facts. We left our pet fish with my sister Abby and picked up the maternity clothes I had lent her, sure that I'd need them soon enough. We packed a tent for the kids to sleep in at our hotel and filled their heads with exciting stories about adventures to museums, carousels, and the Batman store (known to others as the Warner Bros. store). At one and two years old, they were too young to understand the purpose of our trip to Gotham City, so we didn't try to explain.

Jack and Henry, the Dynamic Duo, prepare for bedtime
The Strongin Goldberg Family

O
n January 4, 1998, we drove to New York City. No one we passed on Route 95 north that day, walked by on the streets of New York, or sat next to in the fertility clinic knew anything of our challenges. But I had a newfound sense of importance and focus. My feeling of privilege and honor that we could be the first to benefit from a technology that was sure to save countless lives in the future overshadowed my trepidation about being a research subject
for the first time in my life and entering a foreign medical world that would strip away any privacy surrounding the creation of our next baby.

We made arrangements to stay at the Helmsley Medical Tower Apartments, just upstairs from Cornell's IVF clinic, for the remaining weeks that it would take to complete the process and return home pregnant. That first morning, I set two alarm clocks for 7:00 a.m.; neither was necessary. I walked excitedly into the IVF clinic, where I wrote three checks totaling more than $10,000. I also submitted signed consent forms for the IVF procedure, the embryo transfer, the study of nonviable preembryos, and the cryopreservation—or freezing for future use—of embryos unused in our IVF cycle. For us, that last form held incredible promise, as our unused embryos could serve two important purposes: We could use Fanconi-free embryos in the future to have another guaranteed-healthy baby; and diseased embryos could unlock the mysteries of Fanconi and with that, reveal a cure.

I sat alone in a chair in the far corner. An hour or so later, as I lay cold and naked but for an ill-fitting hospital gown on an examining table in the midst of a transvaginal ultrasound, the sonographer muttered something about a dominant follicle. She then finished what she was doing and sent me on my way. I had no idea what she was looking for, what she had found, or what “dominant follicle” meant, but it was over so quickly I didn't have time to ask. I didn't know anyone else who had ever done IVF, so I didn't have anyone to call. I took the elevator downstairs, walked to the coffee shop next to the hotel, and grabbed some milk and doughnuts for the kids' breakfast. When I got to the room, Allen and the boys were just waking up. The kids ate inside their tent in our hotel room

“How'd it go?” Allen asked, handing me a hot cup of coffee.

“I have no idea,” I said.

The kids crawled out from the tent, and the conversation turned
to our upcoming adventure in Central Park. After breakfast, Allen, Henry, Jack, and I walked to the Central Park Zoo to visit the polar bears and penguins, and to feed and pet the llamas and sheep. This was the first of many trips to Central Park to visit the zoo, ride the carousel, careen down the rock slide on pieces of cardboard at the Billy Johnson Playground on East Sixty-seventh Street, or watch street performers, one of whom told Henry the funniest knock-knock joke any of us have ever heard to this day. As we walked through Central Park, a performer approached Henry.

“Knock, knock!” he said.

“Who's there?” Henry said, all smiles.

“Cowp,” said the performer. Henry was confused. He had heard plenty of knock-knock jokes, but this was a new one.

“Cowp who?” asked Henry. The performer laughed, and Henry looked confused. Henry repeated, “Cowp who?”

“Cow poo. You said cow poo.” Henry, realizing it at the same time, burst into a fit of giggles.

As promised, later that afternoon, one of the nurses called me with my daily instructions. She abruptly told me that I would have to remain on the Lupron for four additional days, after which I should return to the clinic for further testing. Apparently, I had begun to ovulate on my own, which is not what we wanted. The Lupron was meant to prevent my body from going through its normal monthly cycle, so that the hormone shots that would follow the Lupron injections could produce more eggs than normal. The doctors wanted to see if a little more time would enable the drug to be more effective in shutting down my body's natural cycle of ovulation. Before I could react or even begin to ask the questions that were flying through my head, the phone call was over.

Just as when Henry was born, I racked my brain to see if I had done anything wrong. I had followed the instructions and done everything they had told me to do. I was trying so hard to be the very
best mom I could be. After all we had been through, it seemed only fair that things should go smoothly. You'd think that I would have dropped the whole “fair” thing by this point, but it was hard to shed my faith and optimism. I was disappointed, but determined. Allen retained his focus on the endgame and took the delay in stride.

“We always said we wanted to live in New York,” he said. “Now we have a little more time to do the things we love to do here.” Of course, it was worth the wait, but it was also costly, as Allen and I would have to pay more than $1,000 for the four additional hotel nights, even at the hospital's discount rate. This was the Upper East Side of Manhattan, after all. The financial costs associated with this extra week in New York exceeded the monthly mortgage payment for our small row house in Washington.

That night, I got the flu. Henry caught it the next day. And then Jack. Allen spent the days filling prescriptions; taking Henry and Jack to the hospital in Hackensack, New Jersey, where Henry's hematologist, Dr. Al Gillio, was based; and taking care of all of us. My friends Karen and Susie, former residents of New York City, had soup and a chicken delivered to our hotel room. My parents drove from Washington to New York to help us out.

“Don't worry, Hank!” my dad said when he entered and saw Henry lying on the hotel bed, his face flushed with fever. “You're going to be shipshape in no time.”

We spent sleepless nights taking baths with the kids to try to get their fevers down.

Despite the sore throat, hot sweats, and chills, each afternoon I would inject my dose of Lupron and hope like hell it was doing what it needed to do.

Twenty-four days and an equal number of Lupron injections later, after a week in and out of the IVF clinic in New York, Allen and I learned that despite all the love and hope and medical intervention, our attempt was a bust. That night I was instructed to take
an injection of a drug called hCG—not to release the twenty-plus eggs we were striving for but the one, unwanted egg that my body had created on its own, which was interfering with the PGD cycle and would never be fertilized and never produce our dream child. I dug my hands into the brown paper bag filled with all of my syringes, needles, and medication and found the unopened bottle of hCG. Allen and I stepped into the cluttered, off-white, undecorated hotel-room bathroom. Wet towels from our many baths had soaked the floor. I kicked them to the side and pulled my pajama pants down. My legs were covered with bruises. With my right hand, I felt for the spot that the nurse had described by phone as the destination for my shot. Allen counted down, three-two-one, and penetrated my skin with the thick needle. The medication burned as it flowed into my bloodstream. I leaned over the sink, sobbing. My head was throbbing and my stomach was bloated from all the medication, my thighs and hips were bruised from injections, and my heart was shattered.

 

T
hat week, Henry's platelets fell to 31,000—their lowest level ever.

Henry playing in Laguardia, Spain
The Strongin Goldberg Family

I
t never occurred to me that there were many desperate couples who tried IVF, only to see it fail, before Louise Brown, the first test-tube baby, was born. But as Allen, Henry, Jack, and I drove home from New York City that January, I felt naïve for thinking that PGD would work the first time, and stupid for asking my sister to return my maternity clothes. This medical breakthrough would require more perseverance, time, and money than we had anticipated.

I was painfully conscious of the fact that the first time, the failure belonged to me. My body had failed me; and I had failed Henry, Jack, Allen, and our doctors. The second time around, I would make it right.

Although we had no doubt that our team of doctors was doing everything humanly possible to help us save Henry, we also were preparing for plan B. Just in case. Over the years, with the help of family and friends, we organized bone-marrow drives from Washington to St. Louis in hopes of finding a backup donor, should our dream of PGD go unanswered. We also raised more than $150,000 for the Fanconi Anemia Research Fund to improve bone-marrow-transplant recovery rates and other treatments for FA. Although the prospects of this backup plan were bleak, it provided us with some hope and the ability to try to help others in the same predicament who may not have access to the resources we had. Importantly, all the hard work provided a much-needed distraction from my increasing fear in the face of Henry's steadily declining blood counts.

Two weeks after returning home from our initial defeat, we tried PGD again. I boarded the Amtrak train in Washington and headed alone to New York City. With me, I brought high hopes and another round of checks totaling just over $10,000 to cover the cost of my treatment. I also brought a laptop computer that would enable me to keep working for my employer, Neighborhood Reinvestment, so I could continue my satisfying job of helping people buy and maintain homes. I also needed to preserve my income and, even more important, health insurance for my family. Because Allen worked for an Internet start-up company whose benefits were less comprehensive, our family depended on the insurance provided through my job. As the train headed north, I longed for someone to talk to or something to read that would help me understand what to expect with PGD or, better yet, some success rates that would encourage me that this time
things would be different. Instead I read
Us Weekly
and
Vogue
, and learned what not to wear.

“No dominant follicles,” declared the sonographer early the next morning. A month earlier, those three words would have meant nothing to me. Today, they meant that the Lupron worked, I was not ovulating, and my body was poised to save Henry's life. The nurse took a blood sample to test my estrogen level for confirmation. All I had to do was wait seven or so hours until the IVF nurse called to let me know that I could start the next phase of treatment. To tell me that this time, everything would be different.

I took the elevator down to the street level, opened the door to the freezing cold outside, and began to walk. I didn't have any particular destination, just a need to pass the time until the call. For many long, quiet hours, I followed the green traffic lights wherever they took me. I walked slowly, getting lost in the crowd pushing their way across Park Avenue. Sometimes I would make it to Central Park, where I could walk for hours undisturbed. I didn't care where I went; I just needed to keep walking, to keep hoping.

I eventually took the train to my Aunt Alice and Uncle Peter's house in Morristown, New Jersey. I was resting on the couch, fighting off a blinding, Lupron-induced headache, when Dr. Rosenwaks called. The news wasn't good. He told me that I needed to remain on the Lupron for four more days, at which point I should return for further testing. Despite the two months on Lupron, my estrogen level was still twice as high as it needed to be to safely begin taking the Follistim, the drug to stimulate my egg production. I hung up the phone and cried. We had already waited so long to get to this point. As I sat on the couch hiding under a blanket, I wondered what I was doing there. I should be home with the boys, enjoying what little time I had with Henry. What was I doing spending the days walking the streets of New York, waiting on disappointing test results? But of course, going home was out of the question. Giving
up meant that Henry would die, and there was no way I was going to sit back and let that happen.

I pulled myself together and called Allen at home. He was in the middle of giving the boys a bath. I could hear them laughing in the background. He could hear the disappointment lingering at the edge of my voice. But being nearly two hundred miles away, there wasn't much he could do to make me feel better.

“I know it's hard,” he said. “But we have time to keep going.”

“I know,” I said. “I just wish I could be there with you guys. I want to be blowing bubbles and watching the boys catch them on their noses.”

“We'll be there in a couple of days and we'll have a great weekend,” he said. “Try to focus on the big picture; it's just a few extra days. It's so worth it.”

“You're right. I just wish I could read them a story tonight.”

We said good night and a little while later, the phone rang again.

“Mommy,” Henry said. “Will you read a story?”

“I would love to, sweetie. Which one should we read?”

“
Goodnight Moon
.”

And so, with Jack and Henry tucked under their covers in Washington, and me tucked under mine in Morristown, I “read” my babies a story, which by that point I knew by heart, and kissed them all good night.

Allen later told me that after we hung up, he and Henry had cuddled inside the fort they had made of sheets on Henry's bed. They spoke in hushed tones so they wouldn't wake up Jack, asleep in the next room. Their headlamps, a camping mainstay that had become standard equipment in our house, lit their way. “Dad, I want to see Mom,” Henry said.

“Hen, I told you that she needs to stay in New York a little longer, but you, me, and Jack are gonna head up this weekend to see her.”

“When?”

“In less than forty-eight hours.”

“That's too big. Tomorrow?”

“How about in two days? Does that sound better?”

“Yeah!”

 

W
hile I waited for Allen and the boys to arrive, and to return to the IVF clinic later that week, I turned my attention to work and spending time with friends in New York City. I went window shopping with my college friend Susie, who drove in from Connecticut, and ate delicious Italian desserts at one of John Lennon's old haunts, Café La Fortuna in Manhattan's Upper West Side, with my elementary-school buddy Rich Freedman.

I also decided to chronicle my experience with PGD so that no other family would have to go into this as blindly as we had. Although each family would inevitably experience PGD differently, facing a variety of outcomes and decisions along the way, at least I could provide insights as to what to expect practically, physically, and emotionally. There is a significant amount of literature on what to expect while undergoing IVF, but PGD is different because you are enduring the procedure at the same time that your child is slowly dying. This race against time makes the inevitable delays and disappointments nearly unbearable.

I also recognized that this medical breakthrough—whenever it happened—would result in an extraordinary amount of media coverage, and would spark ethics and policy debates. I knew that it would be easier for people to oppose abstractions, like designer babies and embryonic stem-cell research, than it would be to challenge medical advances that could save a child like Henry. So in return for my gift of being able to be among the first, I carefully chronicled each injection. I kept track of every egg I produced, every
embryo that was successfully fertilized, and every disappointing test result. In my journal, I described the heights of my hope and the depths of my despair.

On the day of my appointment, I left my aunt and uncle's house in Morristown at five forty-five a.m., and drove their car into New York City for further testing. I gave a few vials of blood, had a sonogram, and was back in the car heading to New Jersey three hours later. I spent the day napping, working, and wishing I were with Allen, Henry, and Jack. That evening, I learned that despite forty-two shots of Lupron, my estrogen was still too high to safely begin IVF. On the phone, Dr. Rosenwaks presented three possible courses of action. I could immediately begin taking Follistim, a medicine that stimulates the production of multiple eggs, and come in for careful daily monitoring since I would be considered high-risk because of the possibility of hyperstimulating my ovaries. Or I could increase the number of daily Lupron shots to two a day for a few days and then start Follistim. Or I could take a shot of hCG like the last time, go back home, and wait a few weeks to begin the process all over again.

I simply couldn't board the train back home defeated yet again. I also couldn't bear the thought of remaining in this holding pattern for another few days while I sat waiting too far away from Allen and the boys. I could not wait any longer. After some pleading on my part and much consideration on his, Dr. Rosenwaks agreed to pursue the first option: Immediately begin the Follistim and proceed with caution. That night I lined up all the needles and vials of Lupron, Follistim, and the diluent to mix it in. I read and reread the directions, mixed the medication precisely, and carefully injected the Lupron and then the Follistim into my sore thighs, bruised from months of Lupron injections. The medication burned as I injected it, but I didn't care. It felt so good to have forward momentum. Over the next week or two, Dr. Rosenwaks's job was to achieve a balance between
giving me enough Follistim to produce a considerable number of eggs (hopefully ten or more) without hyperstimulating me (associated with risks including nausea, difficulty breathing, and blood clotting, among others) and having to cancel the whole cycle. His sterling reputation is based on his expertise in these matters.

My last real study of genetics was in preparation for my sixth-grade science-fair project on Gregor Mendel. Despite my taking home first place, I was hardly an expert at age twelve, let alone now, at age thirty-two; but I understood that each fertilized egg had a 25 percent chance of having FA. Because the chance of any one being both healthy
and
an HLA match was merely 18.75 percent, the more eggs we tested, the greater the likelihood that we would beat these daunting odds. Although I hoped for twenty eggs, at this point I was so desperate that I would have settled for anything more than the one I could produce each month on my own.

The next day, Allen, Henry, and Jack finally arrived in New York City, where we spent a long weekend at the Helmsley Medical Tower Apartments for yet another $1,000. I waited for them in the lobby, and when I saw Allen pushing the double stroller through the large glass doors, I thought my heart would explode from excitement. Henry jumped out of his seat and ran into my arms. It had been six days since I'd seen him, but the way he held on to me, you would have thought we'd been apart for years.

Like he usually did, Jack followed his big brother's lead and, though a little more slowly and clumsily, he also ran out of the stroller and grabbed on to me. Henry made room, allowing Jack space in my arms. Although brotherhood is often fraught with competition, Henry and Jack's relationship seemed to escape that. Instead of viewing Jack as an adversary or worse, as an object of envy given his clean bill of health, Henry saw Jack as a best friend and, as such, someone to look out for. Their closeness was a source of joy for Allen and me.

After dropping off their bags and bundling up, we headed straight for Central Park. It was a crisp and sunny February day. Allen and I each grabbed a stroller handle, and we walked together to the carousel. The music was festive, the lights were bright, and the boys were happy. Henry climbed up onto the black panther, and we boosted Jack onto a white horse. The carousel began to spin. I was dizzy and happy. It felt great to be together again, absent the burden of fear and loneliness weighing me down in the preceding days.

From the hotel, I had easy access to the IVF clinic several floors below, and Henry could be admitted to New York–Presbyterian Hospital Well Cornell for an endocrine workup. He needed to be tested for a growth hormone deficiency; to undergo a hearing and vision screening; to have kidney scans; and he had to visit a neurologist, as well. Fanconi anemia can wreak havoc on all these systems. Henry was just over two at the time, and although he was developing normally, his doctors wanted to rule out any further complications. With each result, I held my breath. In every case, the news was good.

Henry's tests required an overnight stay, so Allen and Henry slept in the hospital while Jack and I returned to the hotel several blocks away so I could go to my early morning appointment. These separations were difficult because those were the times Allen and I most needed to be together for emotional support.

First thing the next morning, I took Jack with me to the IVF clinic for my daily blood work and sonogram, and then we were to meet up with Henry and Allen. When we arrived at the hospital, Dr. Auerbach was already there. She told us that Dr. Hughes had a family emergency. His wife, Claudia, had been found to be ill with cancer after a long remission. We had grown very close with Dr. Hughes, and he and Allen had developed a particularly strong bond. He was such a wonderful, supportive advocate, doctor, and friend to us. Our hearts broke for him, and for ourselves.

Despite his own challenges, Dr. Hughes assured us that he would oversee our testing. That day, we learned the good news that Henry's platelets had increased to 47,000—the highest they had been in months. Though they were still far below normal, they were well above the level of 10,000 that would necessitate a platelet transfusion and signal that we had run out of time. My ovaries were getting big and, succumbing to my desperation for encouragement, the doctors at Cornell predicted that I had ten or more eggs on each side. That night, the four of us went to my aunt and uncle's house in Morristown, New Jersey, where we would stay until my egg retrieval.