Saving Henry (12 page)

 

I
f only all of Henry's enemies could be so easily vanquished.

Henry gives Cal Ripken Jr. batting tips
The Strongin Goldberg Family

U
nfortunately, our escape from reality would only be temporary. A month after we returned home from Florida, in June 1999, I found myself once again in New York, standing alone before two vials and two syringes, preparing to inject hCG into the black target drawn on my skin. In addition to the fact that Allen and I had already decided that this time—our sixth PGD attempt—we were willing to transfer HLA-uncertain, but potentially
lifesaving, healthy embryos, Dr. Hughes had also told us of a promising new development: He had worked out an alternative method of interpreting the HLA type, which would increase the certainty of the genetic diagnosis.

The next day I awoke from a drug-induced sedation to hear the nurse telling me that they had retrieved twenty-eight eggs. Finally, I thought, our tenacity had paid off.

Allen and I were eating our typical breakfast—scrambled eggs and rye toast—in our booth at EJ's Luncheonette on Seventy-third and Third the next day when an IVF nurse called with our fertilization results. Of the twenty-eight eggs, only fourteen fertilized. Overnight, our chance of success was cut in half. Over the din of plates being cleared and silverware clanging, I asked the nurse if she was sure she was reading Laurie Strongin's chart.

“I want to go home,” I said to Allen, as soon as I hung up.

“Are you sure?”

“Yes. The thought of hanging around for another four days of building anxiety, leading up to a crescendo of bad news… it's too much for me to bear. I need to see Henry and Jack. Let's all get our lives back, if only for a few days.”

And so we went. The next morning I woke up in my own bed, made the boys breakfast, and squandered an afternoon at the park—an act of normalcy that I cherished. I spent the day as I usually did: mastering the art of timing Henry's and Jack's swings just right so I could push one while the other was swinging at his peak. By this time, Jack had gone from being Henry's plaything to his favorite playmate. Decked out in capes and masks, Henry and Jack were the Caped Crusaders of our Glover Park neighborhood. Henry, of course, was Batman. These days, I reveled in the simple act of watching my boys being children. Jack would walk into the kitchen in a well-worn hand-me-down Batman costume, only to appear, an hour later, in his new bright red-and-green Robin costume. I'd listen
to them playing hide-and-seek in the living room in the evenings as we waited for Allen to come home and I set our table for dinner. Jack's strategy was genius: He'd sit on the couch and put his hands over his eyes. Clearly, if he couldn't see anyone, they couldn't see him. Henry played along. He'd walk into the kitchen, flash me a big grin.

“I wonder where Jack is?” he'd say. “Could he be under the kitchen table? Nope.” He'd disappear and I'd hear him calling out from the other rooms of the house. “Could he be in the closet? No. Could he be in the bathtub? No. Where could he be?”

Finally, Jack would remove his fingers from his face, and call out, exasperated: “Here I am, Henry! Over here!”

Heroes and their sidekicks often have differing strengths, and that was certainly true for Henry and Jack. Athletic by nature, Henry was a star on the Dolphins team in his soccer league, and a champion monkey-bar navigator. Jack, far more cerebral and limitlessly curious, was our Boy Wonder. He spent much of his time on the soccer field looking for four-leaf clovers and identifying shapes made out of clouds. Shortly after mastering Dr. Seuss, Jack would move on to encyclopedias, learning and amassing an incredible and varied set of facts about subjects ranging from animals to superheroes, geography to world history, mythology to religion. “Ask Jack,” was the answer to nearly any question that anyone asked the three of us. Clearly if any of us needed a lifeline, we had someone to call.

 

T
wo days after we returned from New York, Allen was on the 7:00 a.m. train, heading back. Once there, he retrieved the cells from the ten remaining embryos at Weill Cornell, jumped in a cab, and boarded a flight bound for Detroit. He had dinner with Dr. Hughes and his children, who were teenagers at the time, before returning to BWI to arrive home around one thirty a.m. The next morning, Allen
and I drove together to New York City for our test results. Two hundred and thirty miles is a long way to go for a phone call—especially one that in the past had so often brought bad news. But we had to be near the hospital so that, in the event of good news, we could do the embryo transfer immediately. As had become the custom, my mother stayed with Henry and Jack for the two days we would be in Manhattan completing the PGD cycle. As our sons understood it, our trips to New York were to go to the doctor so that we could someday bring back a baby brother or sister. In the meantime, we would return armed with Batman figurines for each of them.

After lunch, our cell phone rang. I fished it out of my purse and handed it to Allen. I saw the glimmer of a smile followed by Allen's first-class dimples, then quickly handed him a pen and paper. I eagerly read what he was scribbling: “recommendation no disease; half HLA match; 65% sure identical; 1 great; 1 pretty good; if they take have greater than 50% chance.”

The translation: FINALLY!!

Of the ten embryos tested, two were healthy and had the HLA typing that Allen gave Henry. Dr. Hughes was 65 percent sure that they got the HLA typing that I gave Henry, but this part wasn't definitive. Of the two, one was a great-quality embryo, something we had never had before; the other was pretty good.

With tears running down my face and Allen's hand gripped tightly in mine, we ran for the car and drove to the hospital at Sixty-eighth and York. This was it. Assembled in the operating room were Dr. Rosenwaks and a colleague, along with Dr. Xu and Ruby, the nurse who had been by my side during each and every procedure, ushering in our dream.

Ten days later, I was sort of pregnant. My test was positive, but my hormone level was very low. I would have to repeat the test two days later. Unfortunately, I was scheduled to leave for Chicago the next day for a work event that I had been planning for months on
predatory lending and its ill effects on low-income families and communities.

At seven a.m. on the day of my event, I took a cab to a local Chicago hospital to have my blood drawn by someone who didn't know how much I needed good news. Oddly enough, Lisa Nash was presently undergoing PGD at the same hospital, having found other doctors to help her. In the cab back to the hotel, I leaned my head against the window, watched the city pass by, and hoped beyond hope for good news. I was bone-tired, partly because of the travel, and partly because of all the energy I devoted to hoping for success. Since starting PGD, we'd never had this good a chance, and deep inside I believed that this time, it was going to work. The doctors I had been speaking to over the last few days had all gently warned me not to get my hopes up too high. Based on the results of the test I had taken two days earlier, they said it didn't look promising. But as I slipped out of the cab that morning and headed to the meeting, I pushed aside their words of caution and the fact that, even in the best of circumstances, IVF works only one-third of the time.

Maybe I was crazy, maybe I was stubborn. But either way, I held on to the hope. It was the only thing I had left.

 

I
wasn't pregnant.

I was told this news on a pay phone, in the hallway of the hotel, where, in the conference room next door, hundreds of strangers were gathered. I barely remember that day, which melted into a blur of sadness, anger, and devastating disappointment; and a need for me to do my job, to act like a normal person with a normal life, able to carry on normal conversations and care about things that were not matters of life or death. It was almost more than I could handle.

 

B
ut there was more.
The seventh attempt
. The night when Allen had to drive six hundred miles on four hours' sleep from New York to Detroit through the eye of Hurricane Floyd, the cells in a cooler in the backseat of a rental car, after his flight was cancelled.

The eighth attempt
; the morning I found out I was pregnant. With an HLA-match. Finally pregnant.

“It's all been worth it,” I had told my parents over the phone, all of us too overcome with joy and emotion to say much more. Then I handed the phone to Allen, who sat next to me at the desk in his office, as we took turns relaying the unbelievable news to all our doctors, family members, and friends who had been with us through our odyssey. We were overjoyed, elated, relieved. I had never worked harder for anything in my life. I had never faced anything with higher stakes. My prior successes in life had been so minor, so unimportant. Against the odds of deadly genes, powerful political opposition, and unlikely statistical probability, Henry would survive.

For two days I lived in a state of total bliss and overwhelming gratitude.

Then I miscarried.

 

W
e were nearly out of time.

In the four years that had passed since we made our decision to pursue PGD, I had taken 353 injections, produced 198 eggs, and had no successful pregnancy. We had spent nearly $135,000, most of which was not covered by insurance, and far too many days apart from one another, our home, and our life. Our hopes were raised to the highest heights and crashed to the depths of despair, over and over again. There was no medical explanation for our lack of success, just bad luck, I guess. Often our best embryos had FA, while the poorest quality were FA-free/HLA matches that failed to produce a pregnancy.

We understood that our chances for Henry surviving a bone-marrow transplant would be further jeopardized if we continued to pursue PGD beyond one final attempt, our ninth, before it was too late. Drs. Gillio and Wagner had made that clear. The sicker, and therefore weaker, Henry was prior to his bone-marrow transplant, the lower his chance of survival. And the chance for his survival, even while strong, was still close to zero with a nonsibling donor. Henry
was
getting sicker. During the time that we had been pursuing PGD, his platelets had fallen from a high of 103,000 to a low of 10,000; his hemoglobin from a high of 12.2 to a low of 6.9; his absolute neutrophil count from a high of 1,900 to a low of 300. The absolute neutrophil count, which determines the extent to which you are at risk of infection, had been hovering around 400—or dangerously low—for nearly two years. His vulnerability resulted in a recent case of pneumonia and along with IV antibiotics, his treatment included two platelet and two red-cell transfusions. In other words, despite the fact that he still felt and acted like a healthy boy, Henry's bone-marrow function was in a state of collapse.

By the winter of 2000, Henry was a regular at Georgetown Hospital's Lombardi Cancer Center, where he went several times a week for blood tests that tracked the progress of his bone-marrow failure. He would bring his own Band-Aids, preferring Batman to the flesh-tone standard, and would stock the treasure box with Happy Meal toys to share with the other patients. Arriving in his ubiquitous Batman costume with fully equipped utility belt, Henry was a hit with all the doctors and nurses. Especially Suzanne.

“Can I be your girlfriend?” she asked after successfully inserting an IV into Henry's arm.

“Nope,” Henry replied. “I already have one.”

 

J
ust about the last thing you'd want to have happen when you're a young man out on a date with an older woman is for the hostess to welcome you and hand you a set of crayons and a coloring book. Especially if she picked the
wrong
coloring book.

“This is not the one I want,” explained Henry. “I want the one with the animals in it.” Suzanne was impressed. “I like a man who knows what he wants,” she later confided in me.

Henry was a regular at Cactus Cantina, a Mexican restaurant in our neighborhood whose delicious smell of fajitas welcomes you from blocks away. Being his favorite place to dine out, it was the destination he picked for all special occasions, and also whenever he had a craving for tortilla chips cooked just right.

Suzanne Knubel, one of Henry's nurses at Georgetown Hospital, remained unsuccessful in her many attempts to steal Henry's heart from Bella, but had safely secured a position high on his list of favorite people. Suzanne was tall, pretty, and had a friendly smile and terrific sense of humor. She also was good at finding a vein and getting a blood sample, always on the first attempt. Whenever Henry went to have his blood checked, Suzanne greeted him with a big hug. She laughed at Henry's jokes and admired his strength and good attitude. After many conversations—some to clarify that he already had a girlfriend and others about logistics—Suzanne finally secured a date with Henry, on a Saturday night, no less.

Henry watched for Suzanne's car from the wooden swing on our front porch. It was a crisp fall day and the ground was covered with leaves that crunched with each step. It was late afternoon and the sun hadn't yet set, so the pumpkins on our porch were unlit, but you could easily make out the Bat Signal we had carved the day before into Henry's pumpkin. Suzanne drove up and Henry ran down the steps and they headed out for a special Saturday night.

While they waited for the table, Henry acquired two pieces of
uncooked tortilla dough for him and Suzanne to squish between their fingers.

Given the early bird nature of their timing, they were lucky and got a table by a window so they could watch the passersby. A creature of habit, Henry ordered the usual, a Sprite and some tortilla chips. He asked Suzanne to pass the salt shaker so he could meticulously salt each individual chip prior to eating it. At $1.49 for his meal, Henry was a cheap date.

They ate, talked, did word searches, and colored for the better part of an hour and went for a walk in the neighborhood when they were done.