That fall, while Drs. Hughes and Rosenwaks got ready for us, Henry turned two. The day was sunny and bright, mirroring our spirits. Perched in his chair at our dining-room table, with light streaming through the windows, wearing overalls and a Batman party hat, Henry ate the cake I had made. His chocolate-covered dimples threatened to melt my heart. He squealed with delight as Allen suspended him by his ankles and repeatedly dunked him through the net on the Playskool basketball hoop we got him. “More, more, more!” he yelled whenever he sensed Allen tiring of the game. My parents gave Henry a brand-new red-blue-and-green tricycle. He immediately jumped on the bike and started riding it across our small living room, into the dining room and kitchen, turning the area into a race track. “Look me! Look me!” he exclaimed as he breezed by.
Finally, 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 clotting—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.
Henry’s Favorite Things
• Having lemonade stands
• Shabbat Sing at Gan Hayeled Preschool
• Lady and the Tramp I and II
• Wearing a tuxedo
• Slow dancing
• Chocolate croissants
• Harry Potter, “The boy who lived”
6
TAKE ONE
Jack and Henry, the Dynamic Duo, prepare for bedtime
The Strongin Goldberg Family
On 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.
That week, Henry’s platelets fell to 31,000—their lowest level ever.
Henry’s Favorite Things
• Ari, Jake, and Simon
• Playing Uno, Skip Bo, and Blink
• His teachers Elaine, Big D, and Little L
• Tortilla chips with lots of salt at Cactus Cantina
• Counting by 5s
• Party favors
• Foreign currency
7
HOPE FOR HENRY
Henry playing in Laguardia, Spain
The Strongin Goldberg Family
It 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 W
ashington, 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!”
While 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.
Saving Henry Page 7
