I didn’t know if Henry was dead or alive.
I watched as a chest X-ray was taken and tossed up on the wall. The tech stared in disbelief and exclaimed, “What has this kid had done to him?” From my position on the emergency room floor, I stopped sobbing long enough to rattle it all off, slightly above a whisper.
Tetralogy of Fallot open heart surgery thumb removed bone marrow transplant a lung biopsy two liver biopsies brain surgery two Hickman catheters a G-tube.
Please, I added. Don’t let my boy die.
I sat on the floor, waiting for Allen. We had spoken at some point, although I could barely recall when. I told him that I didn’t know whether Henry was alive. I told him to come, as soon as he could. After we had talked, a nurse had called Allen, urging him to get quickly to the hospital. He would be needed to help me make “difficult decisions.” Allen heard this as good news. At least Henry was still alive. Allen voiced concern that he might be stopped by the police since he was driving 90 mph in a 45 mph zone and passing cars on the left and on the right. The nurse said that wouldn’t be a bad thing—the police would get him to the hospital even faster.
Allen arrived. Henry was unconscious, on a ventilator, his life still in jeopardy. Hours later, Henry was transferred to a room in the pediatric intensive care unit where he lay lifeless but for the ventilator pumping oxygen into his lungs.
Allen came close to me, and I saw the anguish in his eyes.
“I have to tell you something,” he whispered, his voice cracking into pieces. He told me, confided in me, that although he was sure that he had given Henry the right dose of morphine before heading out to pick up his father—he was as diligent a nurse to Henry as I was—he was now unsure of himself and possibly, even probably, he thought this was all his fault. He was to blame. My reassurances fell on deaf ears. I couldn’t talk him out of that fear then, or today.
The next day Henry woke up surprised to find himself in the hospital surrounded by doctors, nurses, and connected to a bunch of machines. He took in the scene.
“What happened?” he asked.
The sound of his voice and the alertness in his eyes told me all I needed to know—that his brain was in as good working order as ever. I told him the exciting tale of how his heart had stopped briefly and how we got to ride in a police car with the siren blaring, and how his superpowers had been activated and he started breathing again. I balanced my desire to tell the truth while disguising the death-defying nature of the incident. I didn’t want him to be scared to take a nap again for fear he would never wake up.
Henry listened intently and said with a smile, “I’m like Harry Potter. I’m the boy who lived.”
I don’t know if it was my maternal instinct, the doctors’ skills, Henry’s resolve, or just plain luck, but Henry did not die that day.
In fact, he started to feel better. A few days after surviving this experience, Henry’s physician, Dr. Shad, stopped by his room on a Friday evening, on her way out for the night.
“Have a good weekend, Henry,” she said with a smile.
“That’s easy for you to say,” he responded. “How can I have a good weekend when I’ll be here in the hospital the whole time?” After a brief pause, he added, “I have an idea. You know what will make it better? My friend’s having a birthday party. Maybe I could break out of here for a while and head over there.”
Dr. Shad, one of Henry’s most compassionate doctors, looked carefully at him and then at me. “That does sound fun,” she said. “Do you think you can keep your mask on the whole time?”
Henry’s smile grew larger as he furiously nodded his head.
“And do you promise to wash your hands really, really well?”
Two days later, Henry was at his friend Rachel’s sixth birthday party. With all of his friends from school, he ate cake, helped open the gifts, and ran as fast as he could—which was a lot slower than all the other kids—through an obstacle course created for the occasion. When he finished, everyone high-fived him. He left with his goodie bag and filled with renewed determination to spend less time in the hospital and more time at parties.
Two weeks later, Allen and I drove him and Jack to school for their first day in first grade and kindergarten respectively. Henry showed Jack around the kindergarten classroom, introducing him to the teachers and classroom turtle, Speedy, and then hurried off to see all his friends.
Henry started first grade with much enthusiasm. “At school I like to go to PE,” he wrote in the journal he kept in class. A later entry had a picture of a pumpkin that Henry had taken with his new Polaroid camera. He signed it “Harry.” Like millions around the world, Henry loved Harry Potter and felt a special connection to another boy who had survived against all odds.
Henry’s note under the photo read: THE BOY WHO LIVED TOOK THIS PICTURE.
Within days, Henry was hospitalized with yet another transplant-related complication. We had all along sent Henry and Jack to a small private school where everyone knew one another and the school made it a priority to protect Henry. The parents of kids in his class had agreed to call us if they observed any signs of illness in their children so we could keep Henry home from school. Obviously, there was a risk that a child could have the flu or chicken pox before the parent realized, but we were determined to weigh that risk against the clear benefit to Henry of going to school and being with friends.
Not long after this hospitalization, Drs. Shad and Wagner agreed that Henry’s health had deteriorated to a point where he could no longer attend school. His immune system was not strong enough to fight off the common germs that are a natural part of the school environment. Henry spent the month of October in isolation at home, with the exception of sneaking out to see Bella the evening of his seventh birthday.
Something just didn’t seem right to me. It had been more than two years since Henry’s transplant, and he still needed blood transfusions. That fall, his inability to grow and thrive had required a feeding tube into which I administered all his nutritional needs. But despite the fact that he was “eating” plenty, he was shrinking in size. In 2002, Henry had gone from wearing size 7 in the spring to 6 in the summer, and 5 and then 4 by his seventh birthday in October. While Henry was still bigger than our baby Joe, Jack towered over him. Throughout the year, rarely had more than a week gone by without an infection and hospitalization. We never even bothered to unpack our bags, as we had come to expect late-night fevers and dashes to emergency rooms. Our optimism kept us going to the beach or on vacation when we could, so we got to know the emergency room staff at hospitals in New York City; Lewes, Delaware; and Fort Myers, Florida. I had long since given up going to the office, settling for working online for my required twenty hours per week to keep our health insurance, which protected us from financial ruin. Allen didn’t bother to look for a full-time job anymore, since he couldn’t even count on being able to show up for an interview. Henry’s medical-bill folder went from filling up a desk drawer to occupying three large storage tubs.
But none of that led me to conclude that it was time, yet again, to return to Minnesota. Instead, it was my conversation with Henry early one morning in November 2002, when he asked if we could talk about the good old days when he was three. He wanted to talk about his dates with Bella especially, like the time he went to her ballet recital with her family and brought her a bouquet of flowers. The only other time I remember having a conversation like that was with my ailing grandmother just before she died. We laughed as we remembered the good times in an effort to stave off the reality that her life would end at any moment. That was the last time I saw her.
Allen and Henry went to Minnesota first. We decided that I would remain home with Jack and Joe, so Jack could go to school and Joe, who was still a baby, could avoid the harsh Minnesota winter weather and hospital-borne germs that could pose a threat to his young immune system. Dr. Wagner would examine Henry and let us know whether my instincts were on to something or if, as everyone else believed, this w
as just another bump in Henry’s rocky road to recovery. Dr. Wagner wanted them to stay a few days.
Allen viewed this as a boys’ getaway, so upon arriving in Minneapolis he started planning the fun. He bought two tickets to a college football game between the University of Minnesota and my alma mater, the University of Michigan. Over the years, I had gotten everyone hooked. Henry and Jack were proficient at yelling “Go Blue!” from an early age. Within days of their arrival, Henry got a fever and was hospitalized, and Jack and I flew to Minnesota. One week later, my mom and Joe joined us, and we all moved into the local Ronald McDonald House. Needless to say, Allen and Henry never got to see the inside of the Metrodome on that trip.
The Get Well Card Helper in both Henry’s and Jack’s classes got to work, and while we were in Minneapolis that fall, Henry and Jack received many packages from school filled with pictures, cards, and notes from friends and teachers. “Henry. I love you. I miss you very, very much. Please come back to school soon,” said Emily. This sentiment was echoed by kids in nearly every grade of Henry and Jack’s small Jewish day school in Washington.
Allen and I switched off nights at the hospital while the other slept in our one-bedroom apartment with my mother, Jack, and Joe. One week led to another, so we enrolled Jack in the Minneapolis Jewish Day School, where he would join friends he had made when we first arrived in Minneapolis years earlier. With temperatures well below freezing, my friend Susie shipped a box filled with hats, gloves, snow pants, and winter boots for all of us. Allen’s family flew to Minneapolis to join us for Thanksgiving dinner at Ronald McDonald House, which was warm and generous and sad and lonely.
Allen brought some new music and with it, new cheer into Henry’s room, compliments of Dan Zanes’s Night Time! With songs like “Smile Smile Smile,” about how just thinking of a special someone makes you smile; and “Firefly,” about how those little bugs bring the magic of summer to the air; and “Side by Side,” about how none of the bad things matter much whenever we’re together, it was as if Dan Zanes wrote the whole album with Henry in mind. Dan Zanes calls it “nighttime music, firefly music, shadow music, rainstorm music, bat music, streetlight music, dinner music, moon and stars music, flashlight music, or dream music.” I call it “Henry music”—and whenever I hear it, I cry.
I knew Henry was nearing the end on December 6, 2002, when Allen and I negotiated a one-hour leave from the hospital in a desperate attempt to remind him of some of the pleasures of life. Allen, Henry, Jack, and I took a quick trip to Toys “R” Us, carefully placed Henry’s shrunken body into a shopping cart, and bought him the new robotic Star Wars R2D2 he had been longing for.
He didn’t even crack a smile. Instead he begged to return to the hospital for more morphine to diminish the excruciating pain.
That night as the Hanukah candles in his hospital room extinguished, Henry began to gasp for breath. Around midnight, he sat in my lap and I enveloped him in my arms as we made our way in a wheelchair through the deserted, lonely hospital corridors to the radiology department. In the middle of the night, I called Allen, who was with Jack, Joe, and my mom at the Ronald McDonald House nearby, to let him know that things were deteriorating and I was scared. In a matter of hours, Henry lost the capacity to enjoy even a good moment, then the ability to breathe on his own, then he lost consciousness.
The last words Henry said to me were “Mom, this is a very bad last night of Hanukah.”
I made my final desperate call to Allen, who stood gloveless outside the Ronald McDonald House chipping away at the ice on the windshield of our rented minivan in the subzero Minneapolis cold, asking him to come immediately. Allen arrived as I was screaming down the hall for someone to help me as the code red alarm blared from Henry’s room. Over the next several days, Allen’s father and my father, our siblings, Allen’s friend Bill, and my aunt flew to Minneapolis to visit and help us survive yet another quiet, horror-filled day in Henry’s room in the pediatric intensive care unit at University of Minnesota Children’s Hospital. As Henry lay still in a room that was steadily filling with medical equipment to pump oxygen, blood, antibiotics, morphine, and nutrients into his battered, unresponsive body, just outside in the hall, Joe took his very first steps.
Every few hours, Allen updated the blog he created to update our family and hundreds of friends on Henry’s condition.
Friday, December 06, 2002
Henry once again cheats death. And again it is Laurie who has to save his life—in a hospital. This morning at 7 am, Laurie called me at the Ronald McDonald house and asked that I rush to the hospital to be with her and Henry. Last night, Laurie, Jack, Joe, and I went to a Hanukah party and performance by Jack’s school at a synagogue northwest of the city. It was fun and we actually saw some people there we know. Jack was awesome and it was nice to be altogether as a family, albeit minus one. We decided to leave a little early and Laurie went to the hospital (after tucking in me, Joe, and Jack) to relieve her mom and stay overnight with Henry. Before I went to sleep Laurie had called to let me know they were taking Henry for a chest x-ray because she noticed his breathing was very labored. All night long no one could get Henry comfortable. He had an oxygen mask on but he was still in trouble. By this morning, Henry took a precipitous downturn. His blood gasses were drawn and it was obvious to the PICU doctors who were being consulted by the Peds staff that he needed to be intubated. They rushed him to the Intensive Care side of the floor. Before they could get the breathing tube into him, his pulse went faint, his heart stopped beating, and he stopped breathing. CPR was done and adrenaline was administered. They got his heart functioning again and proceeded to intubate him. He is now on a ventilator. In addition to the tube down his throat, a new central line was placed in his groin going up to his heart. Henry has been given medication to paralyze him, so his body can focus on essential life sustaining functions.
The preliminary judgment of the doctors is that Henry has an infection and when they administered antibiotics to treat that infection, toxins were released into his body. I think this is called sepsis or septic shock. There is a mass of fluid in his lung which they now are draining. He is in very critical condition. My sister flew in immediately. Laurie’s sister, dad, and my best friend Bill are all in transit. Henry isn’t going to die. In fact, if the infection is pneumonia and they can treat it successfully, then hopefully the pain in his shoulder will be resolved. Whenever Henry has pneumonia, his shoulder hurts him terribly.
Right now he is laying catatonic on the bed with a plastic pillow of warm air bringing up his body temperature, which is kinda low. I am holding his hand (when not typing) and I talk to him a little bit, though I know he cannot hear me. I was just telling Laurie how a day or two ago, I told Henry that my goal was for him to feel well enough for me to give him a big hug. His body’s fragility has robbed us of the physical contact that I love so much. Laurie said last night he sat on her lap on the wheelchair ride to radiology and she was in heaven. We’re waiting for a blood transfusion, but in a snafu the blood bank hasn’t readied any. He is stable. This is sad.
Monday, December 09, 2002
Henry is laying there like one big bloated catatonic boy. We talk to him all of the time like he can hear us. It is incredibly painful to do this. We talk in that loud voice one uses when they talk long distance on a cell phone, like it’s going to make any difference. Putting lotion on his body is a treat. We keep him all lubed up and moving from side to side. I hope that touch really does heal. It is sad that you cannot hold or hug him with all of the tubes and wires that have sprouted out of his body.
One thing that has been really bugging me the past 72 hours is that I cannot remember Henry from any time before 7 am on Friday morning. It is so strange not to be able to remember the past 7 years at all. I cannot bring into focus any images of Henry playing, singing, fighting with jack, swimming, eating, cuddling, reading, hitting a baseball, kicking a soccer ball, watching movies, dancing, anything. I have stayed home and taken care of hi
m the past two years and my memory is blank. It is like how my memory of my mom is frozen on the day she died. To correct this I am going to watch a copy of the Nightline DVD that we brought with us. Henry was featured on it earlier this year and they captured a lot of good footage of Henry being Henry. I cannot wait. I have a feeling this will make me cry a lot. I keep having this headache (so does Laurie) that is a result of not crying but feeling like I have to cry. When you weep a lot you get a headache. I wonder what is behind that phenomenon. Why does the body punish you for crying. Everyone always says, “Go ahead and cry.”
Tuesday, December 10, 2002, at 10:57 a.m.
They just dropped the bomb. The preliminary results of the bronchial lavage is aspergillus fungus. From the first days of our understanding of FA and bone marrow transplants, the doctors always cited aspergillus as the major cause of death for Fanconi transplant patients. Reported attributable mortality from invasive pulmonary aspergillosis has varied, but rates are as high as 95% in recipients of allogeneic bone-marrow transplants. They are going to get a CAT scan done and if it is localized and not spread, they will operate and remove that part of his lung. You can imagine the risks associated with this kind of major surgery. I have a sense that Laurie might want to let him go with dignity and peace and not subject him to this. This will be a most difficult conversation. Please pray or think good thoughts or whatever. I wish it wasn’t this. I love my son so much.
December 10, 2002, 9:10 p.m.
Well this isn’t Hollywood or Hogwarts. My tears just didn’t do it. Nor did my kisses and hugs. This afternoon we spoke at length with Henry’s transplant doctor, John Wagner, who told us he wasn’t entirely convinced it was aspergillus. We decided (Laurie wasn’t too psyched, but did it for me) to go ahead with a lung biopsy to find out for certain if it is a bacterial or fungal infection. This was scheduled for tomorrow. About 20 minutes after we finished, a BMT fellow came over to us to explain that they just received the results of another culture confirming the presence of aspergillus. That’s it. No more. Aspergillus is un-beatable, Fanconi anemia wins. This stupid genetic disease that I was sure was no match for the latest medicine and the greatest love beat us to a pulp. The ultimate defeat. We are now focused on keeping Henry comfortable. We’ll discuss a strategy with the PICU attending for letting Henry go gently. Family members will start arriving tomorrow.
Saving Henry Page 21