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.
When 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.
Despite 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 inevita
bly 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.
The phone rang. It was Dr. Wagner who, after reviewing Henry’s blood work taken at Georgetown earlier that day, confirmed what we suspected. Henry was in grave danger. We had to return to the bone-marrow-transplant clinic in Minneapolis the next day. We had driven before, but we couldn’t do it again. It would take too much time, and Henry’s IV pump didn’t have a car adapter.
I made a list of all the things we had to do to get to Minnesota within twenty-four hours, and Allen and I took them on, one at a time. Allen started by calling and reserving four seats on a flight the next afternoon, which would give us enough time to finish Henry’s eight-hour IV nutrition and to give him his first three IV medications, which would take until eleven a.m. It took Allen a while to make the reservation because he had to explain to the airline agent why we didn’t have a return date, and why he thought that we should get a good fare, despite the last-minute booking. The airline wouldn’t issue our tickets without a return date, so Allen made up a return date and took the agent at her word that all Allen had to do was to submit the $4,800 in receipts to customer service at a later date along with a letter explaining the circumstances to be credited with their best fare. This conversation was followed by similar conversations with car rental and hotel booking agents, each of whom were equally uninterested in the intimate and terrible details of our lives, which Allen had to nevertheless explain in order to receive even a small amount of help.
I pulled out our cooler so we could pack two days’ worth of Henry’s intravenous medications; then it was on to the suitcases, which were still half-packed from our recent stay at Georgetown. We didn’t need to bring clothes for Henry since he had lost a lot of weight and his didn’t really fit him anymore; he’d be in hospital pajamas anyhow. I threw in enough clothes for Jack and me to last a week. My belly was growing rapidly—I was approaching my second trimester of pregnancy—so it was impossible for me to predict what size clothing I would need beyond a couple of weeks or so. Allen carefully packed Henry and Jack’s favorite movies and computer games for the long days and nights in the hospital.
By midnight, Jack was asleep; Henry was hooked up to his nightly feed; we were packed; and we had reservations for our flight, car rental, and hotel. We had left messages all over town; at Jack’s school (he’d be out again), at Georgetown’s hematology/oncology clinic (we needed to cancel our appointment the next day), my job (they’d have to do with sporadic e-mails for the next while), and on and on. Our parents were put on notice. They would drive us to the airport, cancel the newspaper, forward our mail, cancel Jack’s play dates, clean out our refrigerator.
I couldn’t sleep. I was too stirred up with worry and fear, so I paid bills and looked through a stack of pictures from better days. I threw away all the pictures that weren’t perfect, just in case Henry didn’t return from this trip. Once he died, I didn’t imagine that I’d be able to part with anything, even out-of-focus photos. I walked upstairs, past his door, the one with the letters spelling out his name. I wondered whether if he died, we’d ever take the letters down. My mind wandered, horribly, inevitably, to the funeral. I rewrote the eulogy in my head. I’d never be able to deliver it, though, so who would read it? Allen couldn’t possibly; maybe my brother. Who would come? Who would officiate? How would I make it through the service, the burial, the day?
The rest of my life?
At some point, I stumbled into bed next to Henry, who was quietly asleep. I woke up some time later, the beeping of his pump signaling the beginning of another day.
By this time, Henry had lost the use of his left side—we had no idea why—and he couldn’t walk. Allen carried him through the terminal. If people stared, I didn’t notice. Henry finished his IV meds in the airport lounge, so we didn’t have to hook him up in-flight. He slept in Allen’s lap. Jack and I read about knights and made snakes out of Play-Doh. A few hours later we made it to our hotel, and Allen loaded Henry up in a stroller and Jack pushed him to the clinic. Henry’s hematologist, infectious disease doctor, and a neurologist were expecting us.
Three days later, Henry was hooked up to an IV and the four of us were midway through a Pokémon DVD in the hospital’s outpatient bone-marrow-transplant clinic. A nurse came into Henry’s room and asked the kids if she could take them for a walk. My stomach dropped, and I felt the hot pricks of fear spread from my scalp to my spine. The doctors had never separated us from the kids to deliver news, and there had been plenty of bad news delivered over the years. Henry negotiated with the nurse, extracting a promise to visit the vending machine, and then they were off. Jack pushed Henry in his wheelchair.
Dr. Margie MacMillan appeared. She was part of the transplant team, and one of the experts on FA. She told us, without adornment, that Henry had a mass of unknown origin in his brain. He would be admitted to the hospital immediately and a neurosurgeon would perform brain surgery as soon as possible. I was stunned. Nothing I had ever read, and I had read a lot, ever noted that brain tumors were part of the transplant recovery. I was tempted to run and grab the kids and leave that awful place.
Henry and Jack returned with snacks, and we explained that Henry would have to spend a few nights in the hospital. We told them that Henry would get to take some sleepy medicine, and then the doctors would look inside his head to see why he couldn’t walk or play basketball.
He wasn’t worried. By this time, he’d had anesthesia so many times, he knew all about it: what flavors he
liked best (bubble gum or root beer), what it felt like. It was more important for him to get his left arm back.
Several hours later, a neurosurgeon came to visit me in Henry’s fifth-floor hospital room and told me he was able to adjust his schedule so he could perform the brain surgery the following morning. The sooner the doctors knew what was causing the problem, the sooner and more effectively they could treat it.
In the first months of Henry’s life, we were able to learn everything about tetralogy of Fallot, the heart problem Henry was born with, and to shop around for the best surgeon at the best hospital to perform his open-heart surgery. When it came to Fanconi anemia, we had years to learn the language and review the research and then to choose the protocol, doctor, and hospital that together would give Henry the best chance of survival. The fact that I knew next to nothing about the brain or neurosurgery or this particular doctor, and wouldn’t be able to change that in the fourteen hours between learning of the surgery and handing Henry over to the anesthesiologist, felt incredibly irresponsible, and almost more than I could bear. I didn’t even have a computer to Google the doctor, the procedure, the risks, the survival rate. Given that we had no real alternative, our only choice was to follow the advice of Dr. Wagner, in whose hands we had placed Henry’s life nearly one year earlier, and to sign the consent forms. At least we had only a limited amount of time to be anxious and scared.
Saving Henry Page 18