Saving Henry (11 page)

After a cold splash of water, I focused, picked up the first syringe, and prepared the injection. My stomach hurt. It was one thing to inject the needle in my thighs, as I had more than a hundred times before, but this needle was thicker and longer, and its destination was nearly inaccessible. I had never before had to administer it myself.

Time was running out. “I'm gonna do it,” I said to Allen. I put the phone down.

As the clock turned to 1:30 a.m., I reached around and aimed for the target. I pushed the needle through my skin. Switching to my left hand, I used my right hand to slowly pull back on the syringe to make sure I hadn't hit a blood vessel. There was no blood in the syringe, so I pushed it all the way in and then quickly pulled it out. Relieved, exhausted, and impressed, I said good night to Allen and went back to the bed to lie down, only to be awakened five hours later by an alarm clock, sounding the need to return to the clinic for my preop visit. I gave blood, got a sonogram, got my egg-retrieval instructions, and headed to New Jersey to return the car to Allen and say good-bye to him and the kids, who would drive home later that day.

After we parted, I fell into a deep sleep, woke up, and went to the train station headed for Manhattan so I could get to the apartment and try to sleep some more. After driving the four hours home, Allen was joined by my mom, who would spend the night, allowing Allen to turn right back around at six the next morning to catch the train back to New York and be with me for the egg retrieval. Besides
wanting to keep each other company through such hard times, Allen had to provide fresh semen to fertilize the eggs.

I awoke from the anesthesia to hear the nurse muttering an awesome pair of words: “Thirty eggs.”

Three days later, Allen flew to Detroit with biopsied cells from twenty-one of them. Two days later in Manhattan, we learned by cell phone on the corner of Eighty-second Street and Third Avenue that out of the twenty-one embryos, we did not get one single healthy match.

“I'm so, so sorry,” Allen said after hanging up. “But we have time to do it again. Let's call Dr. Rosenwaks's office and make an appointment. This can still work. I know it's hard, especially on you, but we have no other option.”

“That's easy for you to say!” I yelled. “My body is ravaged. I'm covered with bruises, bloated, miserable, and I feel like shit. All you have to do is look at
Playboy
and masturbate.” Without saying another word, we went to Penn Station and boarded a train for home. I almost wished it would just run off the tracks and put an end to the whole damn thing. Around the time the train approached the station in Metropark, New Jersey, Allen reached into his backpack and pulled out a book of photos he kept with him when he traveled. Henry and Jack on a carousel, in a pumpkin patch, on the soccer field, laughing their heads off with brownie mix all over their faces. By the time we got home, I couldn't wait to get back to New York to try yet again.

 

D
r. Hughes's wife died after an agonizing battle with cancer during the week of the egg retrieval in my fifth PGD attempt. Allen flew with Dr. Rosenwaks to Detroit for her funeral. Since my ovaries were well into egg production, we were beyond the point of no return, so we had to proceed with the retrieval, without knowing if
the genetic testing would occur. We discussed two options with Dr. Rosenwaks. They could retrieve the eggs and fertilize them, after which they would immediately be frozen prior to any cell division. Theoretically, they could be thawed and biopsied when Dr. Hughes's lab was ready to do the diagnostic work. This option significantly extended the uncertainty. The second option was to go ahead with the entire procedure with Dr. Hughes's lab staff, but without Dr. Hughes. He had a committed and talented staff, but he was the expert, and ours was such a significant case, and one in which he was so personally invested. After all this time, and all that we had been through together, it didn't seem right to move forward without our partner.

On February 10, 1999, the doctor retrieved seventeen eggs. I balanced being disappointed at the comparatively low number I had produced with my understanding that the numbers hadn't really mattered much in the past. Of those, seven were robust and were suitable for testing. I was convinced this would be a bust just like all the others. Although I tried to find some hope within, the road had been too long and too hard, with too many disappointments. I was sick and tired of false hope.

Two days later, Dr. Hughes, who had found a way to help us in the midst of his own terrible loss, called to say we had one healthy, HLA match that was not very good quality. There was also another one that was a great embryo, healthy with a 50 percent chance of being a perfect HLA match. After all these attempts (we now had created seventy embryos), we had only produced four healthy, HLA matches—none of which were good-quality embryos. I reasoned that for this to work, we would probably have to take a risk and implant an embryo that we weren't 100 percent sure was a perfect HLA match, but that actually had a chance at producing a pregnancy. We weren't willing to take a risk and implant an embryo that might have Fanconi, but implanting one that might not be an HLA
match was different because the baby would be healthy. Because the embryo quality was good, I could get pregnant with a healthy baby that could turn out to be a genetic mismatch. An embryo that had 50 percent chance of being an HLA match was a lot more promising than one with the 18.75 percent chance that we could produce on our own. But, if I got pregnant with a mismatch and carried the pregnancy to term, we would run out of time to help Henry. Could we really decide to roll the dice after all that we had been through?

We had fifteen minutes to decide.

 

W
e couldn't do it. We just couldn't risk the chance that despite everything that we had gone through, Henry could still die. Although I was wavering, Allen was adamant. Go with the one that we are certain about and if it doesn't produce a pregnancy, we can come back and do it all over again. Again, easy for him to say. We taped the picture of embryo 11—a craggly, circular shape with textures and bubbles, like the surface of the moon—on the dashboard of our car and drove back to Washington.

Two weeks later, I got up early the morning of my pregnancy test scheduled at a fertility clinic near our home in D.C. Henry was already awake, so I brought him along for good luck.

Later that afternoon, we were at my parents' house. Allen was so confident that I was pregnant that he thought we should call the doctor's office for the results with everyone around us. In my parents' kitchen, Allen dialed the doctor's office on speakerphone.

A nurse told us that I wasn't pregnant. She was genuinely sorry. I was genuinely angry. Not at her or anyone in particular, but at the whole thing.

“I'm sick of feeling sick and tired,” I told Allen angrily as my parents quickly ushered the kids out of the room and out of ear-shot. “I'm sick of being separated from you and the boys. I'm sick of
having my hopes raised and then dashed. I'm sick of the whole damn thing.”

Allen didn't dare try to convince me that things were going to be OK this time. I looked him in the eye. “Face it,” I said, “this is never, ever, ever going to work. I will do it again and again because we have no other options. But we both know it is never going to work.”

“Let's go home,” Allen said despondently.

On the way home, Allen put a Disney CD on the car stereo and Jack and Henry, ages two and three, strapped into their car seats in the back, started singing the lyrics to “You've Got a Friend in Me,” from the movie
Toy Story.
They were both smiling, flashing their dimples, kicking their legs, looking like they didn't have a care in the world. I glanced into the backseat at them and allowed myself to revel in their purity and innocence. I turned to Allen and said quietly, “I'm so sorry. I can do this. It has to work. I'm not going to let him die.”

 

M
ore than 175 shots, 97 eggs, and 4 potential, but failed, pregnancies later, we were no closer to saving Henry's life than we were eighteen months earlier when we took our first step down this path. We could now officially say that we had done everything we could to help Henry. But that was little solace.

Later that night, I sent an e-mail to the Nashes to let them know that things hadn't worked out for us yet again. I know how difficult that news had to be for them to receive, as Molly's platelet count was falling and they had waited a long time for us to achieve success that only seemed to evade us. Dr. Hughes was still waiting to be successful with us prior to offering this service to other couples. That week, Allen had seen an article on the Internet that mentioned a doctor in Baltimore who might be doing work similar to Dr. Hughes's, and he passed that information along to the Nashes. They had also contacted a doctor in Chicago whom they thought could help them.

Meanwhile, we dug deep within ourselves to explore our alternatives. We could give up on the preimplantation genetic diagnosis. Clearly things were not working out the way we hoped or planned. We reexplored the survival rate for nonsibling, matched bone-marrow donors, hoping that in the more than three years since we began to pursue this treatment, perhaps things had improved. We learned that the survival rate for unrelated (nonsibling) donor transplants for the type of Fanconi anemia that Henry had was still zero. You'd have to be pretty darn lucky to defy those odds. While there was once a time when I considered myself a lucky person, that felt like a very long time ago.

There were two remaining options: Give up on PGD and get pregnant on our own, with the hope that we get the break that had eluded us for years, or continue doing PGD. The more Allen and I talked about what we had been through, the more we knew that we couldn't abandon our efforts. But next time, we would broaden what was acceptable for embryo transfer to include those that were Fanconi-free and had at least a 50 percent chance of being a genetic match, as opposed to being a perfect match. If Dr. Hughes was sure that one or more embryos matched the HLA type that
either
Allen or I passed on to Henry, and that the other half of the HLA match was uncertain, we would take our chances and implant. Although that meant that we wouldn't know if we were successful until I was near the end of my first trimester, we would have a much better chance than we would on our own. This way we would be assured that the baby was healthy, the most critical factor, and that we had a good chance of saving Henry's life.

After the series of long, difficult conversations it took to finally arrive at this course of action, Allen and I made one more very important decision.

 

“
W
e're going where?” Jack yelled.

“You heard her,” Henry said. “We're going to Disney World!”

It was a few weeks later, and two volunteers from the Make-A-Wish Foundation were in our during room, along with my parents, Allen's parents, Abby and her family, Andrew and his family, a bunch of balloons, a very large cake, and two little boys, wearing their brand-new Mickey Mouse ears and smiles big enough to light up all of Washington.

We hadn't told Henry or Jack of the timing of this trip, but it originated during an interview Henry had with tow Make-A-Wish volunteers that Allen had organized. The volunteers had posed the question, “If you could go anywhere or do anything you wanted, what would you choose?” Clearly they got the message.

Within days, the four of us were bound for Orlando, Florida. We spent a week at the park, beginning each day with the all-you-can-eat breakfast with the Disney characters and ending it crowded together, watching the late-night fireworks. Henry's special distinction as a Make-A-Wish guest meant that we never waited in any lines for rides (they thoughtfully usher you in through the exit) or meet the Disney characters. Henry and Jack rode roller coasters; bought new costumes and dressed up as Buzz Lightyear, Peter Pan, and Captain Hook; met and dined with Mickey and Minnie Mouse, Peter Pan, Snow White, Cinderella, and dozens of other characters; and filled autograph books and photo albums.

Whenever Henry saw one of the Disney characters, he would grab his autograph book and run as fast as he could to meet them. In contrast, Jack would run in the opposite direction. “Mom, Tigger is after me. Help me!” he yelled as he catapulted into my arms. After Henry secured each autograph, he would give the character a huge hug, wrapping his small arms as far as he could around their waists. Pictures from the trip feature Henry hugging Mickey Mouse, Henry hugging Cinderella, Henry hugging Mary Poppins, Peter Pan, Chip,
Dale, Snow White, and Buzz Lightyear. We spent several days chasing after Snow White, who threatened to steal Henry's heart from his lifelong love, his girlfriend, Bella.

“Mom, can I see Snow White again?” he asked within an hour of seeing her. We eventually found her by Cinderella's Castle. “Mom, can I see Snow White again?” repeated Henry after she left. After searching nearly every square foot of the Magic Kingdom, Henry settled on a Snow White doll.

Enamored with dressing up, Henry and Jack each acquired a Peter Pan costume and a green felt hat with their name sewn on it adorned with a red feather. One evening at a Disney character dinner at the Grand Floridian Hotel, our two little Peter Pans were surprised and delighted to meet the
real
Peter Pan. After autographs and hugs and the third ice cream of the day, we left, and Henry and Jack came upon a little boy dressed as Captain Hook in the garden outside the hotel. The three of them held an impromptu sword fight. Knocking the laughing Hook's sword out of his hand, Jack exclaimed, “I got him, Henry! I got him!”

“Good job, honey,” I called to Jack, as all three kids romped around the garden.