Saving Henry (13 page)

“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.”

 

L
ater 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.

 

T
hree 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 Spring
steen 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 the 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.

Baseball fans around the country, but maybe most of all in Baltimore and DC, got caught up in Cal Ripken's streak in the mid-1990s. Cal was a star shortstop and third baseman for the Baltimore Orioles from 1981 to 2001, and was vying to break Lou “Iron Man” Gehrig's fifty-six-year-old record of playing in the most consecutive games. On September 7, 1995, about a month before Henry was born, Cal did what was once considered impossible. He played in his 2,131st consecutive game, breaking Lou Gehrig's superhuman record before a sellout crowd of 46,272 in Oriole Park at Camden Yards as the Orioles beat the California Angels 4–2. With that, Cal became the greatest iron man in baseball history.

Cal was Henry's second-favorite hero. In the summertime when we would frequent Funland, an amusement park in Rehoboth Beach, Delaware, Henry would save up the tickets he would win playing games so he could claim his prize: yet another Cal Ripken baseball card. Henry wore an Orioles baseball cap and Cal Ripken T-shirt and practiced his swing, yearning to be a professional baseball player like Cal when he grew up. Watching him whack wiffle balls from our front porch, across the street, and into the neighbor's
yard, Henry's dream of becoming a professional baseball player like Cal seemed within reach. He certainly had the strength, focus, and tenacity required of an iron man.

In March, just a few weeks before I was scheduled to begin the Lupron shots for attempt number nine, we went to Florida. We set our sights on Walt Disney World, where we had a history of good times, and on Captiva, a beautiful sanctuary on Florida's west coast where we had enjoyed birds, dolphins, manatees, and shell collecting years earlier.

As it happened, the Minnesota Twins had their spring training in Fort Myers, Florida, not far from Captiva, and they were playing the Orioles while we were in town. Allen called the Twins' public-relations staff and asked if they would arrange for Henry to meet Cal Ripken.

On March 15, 2000, we arrived at the Lee County Sports Complex. It was a beautiful, sunny, and warm day—perfect for baseball. Jack and I made our way to the bleachers. Henry and Allen headed to the dugout where the meeting would take place. Henry, in his well-worn Batman T-shirt, got to swing Cal's bat, and the two of them talked for a while. When Henry and Allen joined me and Jack, I was eager to learn what they had discussed. Did Henry get the answers to big questions like “How did it feel to break Gehrig's streak?” or “How much longer would he play ball?”

“Mom,” said Henry. “I met the
real
Cal Ripken! I got to hold his bat!” When I asked what they talked about, he answered, “We talked about Pokémon. I asked him which one was his favorite.”

“Well, what did Cal say?” I asked.

“Charizard,” he said, as if the answer was so obvious it need not be asked.

A few days later, tanned, relaxed, and happy, we returned to Washington. But we weren't done yet.

That week, I started my Lupron shots. Also that week, Allen sat
the family down at the kitchen table for a very serious talk with our sons.

“Guys, listen very carefully,” he boomed. “Today you are going to meet William Jefferson Clinton, the president of the United States!”

“No way!” yelled Henry. “I voted for him in school.”

“Me too!” added Jack.

Allen had arranged, through our friend Peter Rundlet, who worked in the White House counsel's office, for the four of us to attend one of President Clinton's weekly radio addresses.

“Do we get to go inside the White House?” asked Henry, who, like all Washingtonians, had driven by it countless times.

“Not just the White House, but inside the Oval Office, which is probably the most important room in the whole world,” replied Allen.

“Cool!” said Henry. “I'm going to wear my suit.”

“Perfect! I'll wear one too,” Allen said.

The boys dressed in their khaki pants and blue blazers and we headed downtown. We passed through security with a small group of people who shared the privilege of hearing the radio address live, and within minutes the kids were face-to-snout with Buddy, the president's dog, with whom they exchanged kisses for licks. When it was time for the recording, we all entered the Oval Office and were asked to keep perfectly quiet during the taping. This was easier said than done for Jack, who was merely three years old. Allen held on tight to Jack, who spent the entire time desperately trying to pull the iconic portrait of Andrew Jackson off the wall. Thankfully, the address ended before Jack was successful, and we lined up to meet the president.

“You must be Henry,” the president said, when it was our turn. “I hear you are a brave little boy. It's really nice to meet you.”

“Thanks!” said Henry. Not one to dwell on himself, Henry held
out the toy he had been carrying and said, “This is Jake Justice. He's a Rescue Hero.”

“He looks strong,” said the president. “Just like you.”

 

F
our weeks later, my pregnancy test was negative.

 

A
s we prepared to call our family and friends to tell them of our impending departure to Minneapolis, I tried to focus on the positive. The transplant would take place at the University of Minnesota Children's Hospital with a donor identified through the National Marrow Donor Program, who matched five out of six of Henry's antigens. This was the very same hospital where the first pediatric bone-marrow transplant was successfully performed, I explained again and again, and featured some of the world's most highly skilled Fanconi specialists, who had performed dozens of Fanconi transplants. We knew that this place and these doctors gave us the best possible chance that Henry could be among the first patients with his particular type of Fanconi anemia to survive an unrelated bone-marrow transplant. Once again, we would be pioneers, hoping this time that the medical breakthrough would belong to us.

“I'm so scared, but I know we have to do this now. Henry won't survive if we delay the transplant any longer,” I said to my friend Karen on the phone one night, after Henry and Jack had fallen asleep. We were planning to stop at their home in Cleveland for some fun on the way to Minneapolis. “But I'd rather be doing PGD again than having a transplant that is so uncertain. I would undergo PGD nine more times—nine hundred more times—if I could.”

“You did everything you could, Laurie,” Karen said, her voice breaking. “I can't wait to see you and give you a hug,” she added.

“Good, because I need one. A big one.”