“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.
Two 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.
But 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.
We 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.”
Just 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.
“That was the best date I’ve had in months,” Suzanne reported after dropping Henry off later that evening. “He is the most handsome, delightful guy I know. He really knows how to make a girl feel special.”
Later that month, Henry’s blood tests revealed news that we had been dreading since he was first diagnosed with Fanconi. Henry’s bone marrow was no longer functioning sufficiently. He would have to have his transplant soon in order to have the best chance for survival. Dr. Gillio explained that Henry could simply not afford to get sick with something like pneumonia again. It was a devastating thing to hear—a devastating realization. This time, our ninth, would be our last.
This heartbreaking development and the decision to schedule Henry’s transplant for the coming summer should our final PGD attempt fail, was offset, somewhat at least, by promising news from the medical world.
Motivated by a deep desire to improve the transplant survival rate (which was just one out of every four children, most of whom did not have Henry’s type of FA), Drs. John Wagner and Margaret MacMillan at University of Minnesota Children’s Hospital in Minneapolis had developed a new Fanconi transplant protocol for patients like Henry who did not have HLA-matched sibling donors. This protocol was designed to address some of the deadly threats associated with bone-marrow transplants—the most serious of all being graft failure, when the new donor stem cells (the parent cells that create all blood cells) fail to “take” and grow after transplantation. In nearly every case of graft failure, the patient dies. The other major transplant complication is graft-versus-host disease (GVHD), where, due to incompatibility, the donor’s bone marrow attacks the patient’s organs and tissues, impairing the patient’s ability to function and increasing susceptibility to infection, potentially leading to death. The greater the disparity between the HLA type of the patient and the donor, the greater the chance of GVHD. For this reason, patients who have HLA-matched sibling donors rarely get GVHD; and patients with unmatched, unrelated donors, often do. GVHD can range from an inconvenience to a deadly disease.
To avoid graft failure and foster engraftment, the new transplant protocol at the hospital in Minneapolis added the drug fludarabine to the preparative regimen—to go along with chemotherapy and total-body irradiation—to more effectively prepare the patient’s body for the donor cells. The protocol also used T-cell depletion to remove the T-cells, which were believed to cause GVHD, from the donor’s marrow.
The doctors believed that to have the best chance for success with the new protocol, it was critical to proceed to transplant while the patient was still relatively healthy, before there were any signs of leukemia, as signaled by abnormal clones in the bone marrow; and also before the patient became transfusion dependent. Having more than twenty blood transfusions was considered too many. Henry had already had four blood transfusions in the past two months, and his white blood cells, red blood cells, and platelets were all far below normal levels.
Several other Fanconi patients had undergone a bone-marrow transplant under the new protocol, though it was too soon to gauge the long-term results. If we proceeded to transplant without a sibling donor, Henry would be the fifth. Yet again, we would place our faith—and Henry’s life—in the hands of doctors and researchers who shared our hope but, more important, had access to the best that science could offer.
As we drove home from New York, knowing we had time for just one more chance to make this work, I thought about that morning four years earlier when Dr. Auerbach had called—the pregnancy test announcing Jack’s arrival still on the table by our bed—to tell us about PGD. I thought about how relieved and grateful I had felt, and how I had carried those feelings with me all those early months, knowing that it was just a matter of time, and of science, before Henry would be OK. And now, here we were: driving home, nearly defeated, exhausted, and about to face the biggest challenge of our lives.
Three months.
We could spend the time as we prepared for our ninth and final attempt worrying and stressing and feeling anxious. Or we could have the best time of our lives.
We chose door number two.
It was the easiest decision we ever made, and we started, of course, with Batman. It just so happened that at the time, Batman himself (like, the real Batman) was coming to Six Flags America in Bowie, Maryland, not too far from our home. When Allen told Henry, he reacted the same way I do when I hear that Bruce Springsteen is coming to town. Long before the Internet made ticket purchasing for such concerts possible, I would spend the night with friends and a cooler full of Budweiser in the parking lot at the Capital Centre in Landover, Maryland, to secure a good place in line and get tickets to the show. Thankfully for Henry, he had Allen.
Of Allen’s good traits, and of those there are many, perhaps the best is his desire to anticipate and fulfill all of our needs. Allen was determined to not just get Henry tickets to the show, but to arrange a one-on-one with Batman. The morning of the show, Henry suited up in his Batman costume. He put on his mask and his utility belt, with batnunchucks and a batarang. He laced up his Batman sneakers.
“I’m ready!” he informed us, in case there was any doubt.
We got to the park, where a Six Flags customer-relations representative handed us th
e tickets to the live-action show and gave Henry a bright blue inflated basketball featuring the Bat signal on one side and Batman in action on the other. “Cool!” he exclaimed, dribbling the ball. The man then walked us to our seats and told us to stay put after the show was over. All of a sudden the music started blaring and the lights started flashing. It was loud. Jack, age three, started crying and covered his ears to minimize the noise of the explosions and pyrotechnics.
“I want to go home,” he pleaded, suggesting that we perhaps should have heeded the signs warning of the show’s unsuitability for very young children.
Henry stood on his tiptoes to get the best view. All of a sudden, Batman sped out on his Batcycle. He saved Gotham City and Vicki Vail from near-certain disaster at the hands of the Joker, and blew Henry away beyond any ten-minute encore version of Springsteen’s “Rosalita” I ever heard.
After everyone left, Henry approached the stage. Batman reappeared. Henry ran over to him and said, “Hi, Batman. I’m Henry. Your cape is so cool.”
Batman took a good look at Henry and said, “You look just like me,” and they high-fived each other. Batman lifted Henry up and placed him on the Batcycle. Henry’s feet dangled down the sides of the bike, his legs well short of the length needed to reach the pedals and take off. Big and little Batman hung out and talked about which villain was the worst (Henry was partial to the Joker) and which accessory was the coolest (the batarang, of course). Then they posed for pictures. As they said good-bye, Henry opened his arms as wide as they could go and gave Batman a huge hug. On the way home, Henry explained, “That was the best day ever. I got to see Batman. It was not a movie.”
Seeing Henry’s reaction to meeting Batman only increased Allen’s determination to make it happen again. Destination: Florida.
Saving Henry Page 11
