Saving Henry (20 page)

As I waited to be called into a treatment room for my daily tests, Sharon and I sat together in the waiting room. It was April 2000 and she was in the middle of her third PGD attempt. I passed along a joke I had intended to tell when my PGD was successful. It went…“There were three men in the room when I got pregnant. None of them was my husband.” I suggested that she could use it when the time came. She laughed.

“There's not a lot of romance to this, is there,” she said, and proceeded to tell me the story of giving herself a Lupron shot on the airplane, on her way from Tel Aviv to New York, as someone stood outside the door, knocking loudly. The other women in the waiting room looked curiously at us: two women sitting in a fertility clinic, laughing hysterically.

After I was done with my appointment, I waited for Sharon. I looked around and noted the new upholstery and other updates in the clinic since I had last been there nearly a year earlier. When Sharon joined me, I asked if she liked the décor and new furnishing.

She looked at me curiously and said, “They're nice.”

I smiled at her and said, “Thank you. Allen and I paid for the whole thing.” It felt good to laugh, rather than the alternative, about all the money we had spent those years.

After the frozen embryo transfer, I took prenatal vitamins and tried to take care of myself, though it wasn't easy to do that while living in the hospital, sleeping (or not) in a chair, eating PowerBars three meals a day, since they exceeded the nutritional content of the entire vending machine, and anxiously waiting for Henry to undergo yet another procedure followed by test results that would inevitably be inconclusive.

A couple of weeks later, the pregnancy test in a bathroom stall at Hackensack was negative. Not long afterward, Allen and I signed
consent forms donating our nearly one hundred remaining embryos to Dr. Hughes for research that would provide answers to other couples, with the hope that no one else would ever have to live through this devastation.

Allen and I determined that the only way to get pregnant was to abandon the use of technology. In the winter of 2001, Henry's ongoing complications led to yet another trip to Minneapolis. Because the stay was likely to be long and Henry wasn't in acute distress, we drove from Washington and got pregnant the old-fashioned way during an overnight stop at a hotel in Cleveland. While in Minneapolis, we learned that we were finally going to have the third child we had spent four years and more than $100,000 trying to produce. My excitement over this longed-for pregnancy and very real fear over Henry's seemingly endless and increasingly serious complications overshadowed my fear that my baby might have Fanconi anemia, but I was worried nonetheless. Allen was certain that the baby would be healthy, that Henry would turn the corner, and that everything would be all right. I wanted to believe him, but to be honest I no longer took comfort in his optimism. I would do my best to remain positive while waiting for confirmation from Dr. Auerbach, who would conduct the prenatal testing ten weeks into my pregnancy.

We were in Minneapolis for one of Henry's post-transplant checkups when Dr. Wagner told us Henry's immune system was finally strong enough for him to go out in public again. It had been seven long, lonely months since the transplant and since he'd been able to do so many of things he loved. We were determined to do something special to mark the momentous occasion.

We didn't even have to think for a moment about where to go. We chose the most “Henry” destination of all: the Mall of America. Allen, Henry, Jack, and I headed out that day feeling happy and upbeat. Henry's health was improving, spring was approaching, and we just knew we were in for a good day.

After picking up the newest Pokémon and Batman figures at the Warner Bros. store; a visit to the Krispy Kreme factory for some fresh, hot, chocolate frosted doughnuts; and some car racing down the track at LEGO; we headed to Camp Snoopy.

Henry was, at the time, about three-and-a-half feet tall. He wore a protective mask and constantly rubbed his hands with Purell. His central line hung out beneath the bottom of his Batman T-shirt. His face was swollen from the steroids trying to protect his body from rejecting his new bone marrow.

And he was scaling a twenty-five-foot wall.

“You know what, I'm going to do it,” he had said, when he first saw the wall at Camp Snoopy.

Before I knew it, Allen and the climbing instructor were staring hard at Henry, scratching their chins, figuring out the best way to negotiate the safety harness around his central line. Then they were knotting the ropes, clipping him in, rubbing his head, and cheering him on. A few seconds later my son was several feet above my head, climbing his way to the top, hand by hand, foot by foot. Everyone cheered, but I was speechless. On his first attempt, he made it up about ten feet. He got about halfway there on his second. With each step, the instructor pulled tightly on the rope and hooted and hollered. It was as if he understood the enormity of what Henry was attempting, despite the fact that they'd known one another for a mere matter of minutes. By his third try, Henry was ecstatic, gleefully laughing, and ready to call it a day.

“I'll be back,” he said to the instructor, unclipping himself from the harness and flashing his famous smile. Then he looked at me. “Not bad, huh?”

“No,” I squeaked out, still floored by the courage of my little boy. “Not bad at all.”

A few days later, he insisted we go back. He would settle for nothing short of victory. When the instructor saw Henry walking
back in, wearing his mask, I thought he was going to cry. With a burst of energy, Henry made it all the way to the top of the climbing wall and rang the buzzer signaling to everyone in Camp Snoopy that he'd summited. Fist in the air, he made his descent. Once on land, he looked me in the eye and said proudly, “I told you I could do it!”

I hugged him tightly. “I didn't doubt it for one second,” I said.

 

W
hen I was pregnant with Henry, I spent my first trimester shopping for onesies, reading pregnancy books, and decorating his nursery. When I was pregnant with our third child, I spent my first trimester in hospitals in Washington, Baltimore, Hackensack, and Minneapolis, depending on Henry's complication. We probably spent about two hundred days that year in a hospital. I had reduced my work hours to part-time and managed, somehow, to put in the required twenty hours per week, often in the middle of the night while Henry or Jack slept. The demands of my job were primarily strategic planning and writing, both of which were relatively easy to do from the hospital. In many ways, work was a welcome distraction from the places my sleep-deprived mind could wander in the dark of the night, when the only sounds were the continuous pumping of medications into Henry's body and the occasional beep signaling that one medication had run its course and it was time for another.

The Internet start-up company Allen had been working for was one of many victims of the bursting Internet bubble, and its staff reduction included Allen, for whom the demands of the job were hard to fulfill from a distance. Thankfully, my job provided our family with medical benefits and a salary of approximately $40,000 per year, which, when combined with our savings, was enough to live on for the time being. Jack, age four, went to school when we were in DC, but whenever Henry's complications took us out of town, we all stuck together. Often my mom accompanied us when a
short stay grew longer, as often happened. While we were on the road, Jack learned the names and classifications of nearly every marine mammal and some basic Spanish, thanks to Dora the Explorer. Henry could recite the lines from nearly every Pokémon episode, and learned to read
Go Dog Go!
Whenever he got to the eponymous page, the four of us pumped our fists three times in the air as we yelled, “Go! Dog! Go!”

Near the end of my first trimester, it was time to find out if the child I carried had Fanconi. My sister, Abby, and I traveled together to a high-risk prenatal testing clinic in Philadelphia recommended by Dr. Hughes for my chorionic villus sampling (CVS) test, which would be sent to Dr. Auerbach for analysis. At the appointment, the genetic counselor explained the risks of the procedure and asked if I wanted to have the updated Jewish genetic screening to see if I was at risk of passing along a deadly disease. She informed me that there were new diseases added to the screening and recommended that I do it. My sister and I looked at each other knowingly. I nodded and signed the consent form.

The day of my test results, I was at my office conducting a performance review for one of my employees when the phone rang. “I have your test results. There is good news and bad news,” said the genetic counselor. Before I could ask my employee to leave my office, the counselor gave me the good news. “Your baby boy does not have Fanconi anemia.” My forehead in my hands, I took a deep breath, and it felt like the first breath I'd ever taken in my life. “But you tested positive as a carrier of Gaucher disease.”

I what?

I was stunned. After all my years doing PGD, how was it possible that I hadn't been tested for everything? I tried to focus on what she was saying—that Gaucher is the most common genetic disease among Ashkenazi Jews, affecting many organ systems like the liver, lungs, and bone marrow—but it was too difficult. I found a pen
and a piece of paper.
Gaucher. Like FA, is a recessive gene. If Allen is not a carrier, our children will not inherit it.
I wrote down the address where his blood should be shipped.
Allen. Get tested immediately.
I hung up the phone and asked my employee for some privacy. I put my head down. My tears ran down my cheeks and I watched them form pools on my desk. Allen was at a meeting for a consulting job he had taken to earn money while he searched for full-time work. When I got him on the phone, for the first time that I could remember, Allen broke down and wept right in the middle of a conference room in front of his colleagues. For five minutes, we stayed on the phone, engulfed in silent sorrow.

“I gotta go get tested,” he said quietly as he hung up. Within an hour, Allen had had his blood drawn and sent via FedEx to the lab in Philadelphia.

I sat alone in my downtown office and Googled Gaucher and learned, among other things, that its symptoms are evident later in childhood, meaning that Henry and Jack could have it and we wouldn't necessarily know. I tried to focus on the fact that my new baby boy didn't have Fanconi anemia, but it would have been nice if that piece of great news didn't have to compete with the fear that he, Jack, and Henry might have some other horrible disease. I was beyond overwhelmed.

Within days, we learned that Allen was not a carrier of Gaucher, which also meant the kids didn't have it. It was a daunting scare, but, like so many others, I pretty much buried the whole experience in my subconscious.

 

D
espite the relentless wrath of his disease, Henry had the physical and emotional strength to fight back. His ear-to-ear smile and joyous laughter were far more noticeable than his many surgical scars and low platelet-related bruises. After being discharged from
Georgetown, he would ask if we could pick up some lemons and cookie dough on the way home so he could set up his lemonade stand. While I made the cookies, he would create signs featuring new pricing structures that inevitably attracted interest and paying customers. Within days of leaving Georgetown's intensive care unit, he was back on the soccer field with his teammates, dribbling the ball up the field and scoring goals.

The good times were invigorating, strengthening our resolve to keep fighting. But some days were so bad they threatened to crush us.

One of those days was April 25, 2001.

That evening, five-year-old Henry lay on our bed at home in Washington, with Jack, of course. They were watching Nickelodeon as the intravenous antibiotic—Henry's twelfth dose of the day—dripped into his veins. The bed was covered with alcohol wipes, sterile gloves, saline flush, heparin, tortilla chips, an Oreo milkshake, and a bowl of Cheerios. The food sat untouched. Water didn't even taste good to Henry anymore, but Allen and I kept trying everything, hoping to trigger Henry's taste buds to remember something of the pleasure of eating.

I went downstairs and assembled the needles, syringes, and vials of vitamin additives that I needed to mix into Henry's bag of liquid food that would be pumped through the catheter in his chest, into his central venous artery, and through his veins all night long in an attempt to keep him alive. I put what little energy I had into feeling nothing. If I weren't so tired and determined to protect Henry and Jack from the fear that I felt, I would have wept.

A familiar cry distracted me, so I ran upstairs to find Allen carrying Henry to the bathroom for the tenth time that day. Jack, age four, sat on the bed and stuffed an Oreo into his mouth as the Rugrats played on TV. By this time, Allen and I didn't have the will or energy to counter Jack's demands for more cookies and cartoons.
He could eat as many Oreos as he wanted, watch as many cartoons, stay up as long as he wanted. We all indulged ourselves our little obsessions; I collected hand creams and candles; Allen bought CDs. Just a way of staving off reality.

I looked over at Henry. His body was ravaged. It wasn't so much the scars left from his open-heart surgery, or the lung and liver surgeries, or even the catheter that hung limply from his chest. It was the bones; the hip bones and ribs that protruded, naked of fat. He probably looked the same yesterday and for days before, but he had spent most of the past weeks in a bed at Georgetown. I just hadn't noticed; my exhaustion kept me from seeing the obvious.

I took out my camera. I wanted to remember how bad things had become, in case Henry died. I needed to have documentation of the bad times. I thought that after he died, I would remember only the good times, and death in good times didn't make sense. What I recorded on film that night was a child ready to die.