Saving Henry (24 page)
Authors: Laurie Strongin
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”âand whenever I hear it, I cry.
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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 lifeâin 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 him 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. IÂ 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.
We want to have everyone here when Henry dies.
We will have Jack and Joe front and center. Laurie and I took Jack to dinner tonight. Jack drew a picture of the family, everyone has on kippot because of Hanukah. Henry has tubes and wires and is happy because he is out of the hospital. I explained to Jack that Henry will indeed be happy to be out of the hospital and it will happen this week. I told him that Henry fought very hard not to be sick, but in the end the sickness was stronger. I told him that Henry was coming home but he was not going to live any longer. I told him that we are going to have a funeral and we need Jack to help bury Henry just like he buried Grandma. I told him that Henry loves Jack and Henry knows that Jack loves Henry. He sat in Laurie's lap with his arms around her and wept. I told him that he didn't need to be strong. Laurie explained that
she was crying because she is so sad and it is just fine for Jack to cry as much as he needs.
I dropped Laurie off at the hospital and went to take a shower at the Ronald McDonald house. The water would only get lukewarm.
Laurie is writing a eulogy. She is writing a book about our life trying to save Henry's life. I started this diary to help her understand the chronology of this visit, which was supposed to be a short one, and what I have been feeling. I didn't know this would become the final chapter. As hard as it might seem to believe, I really thought Henry would be President of the United States one day. I thought he had the wisdom and disposition for the job (like his mother, but I don't think she needs the headache). I am not comfortable writing about him in the past tense. It'll take some getting used to. I don't think I'll be able to say anything at the funeral. I want to make a CD of Henry's favorite music and have it duplicated and hand it out at the ceremony. Then people can take it home and always think about this special guy every time they listen to the music. I know I'll be thinking of him every waking moment and when I sleep. I just want the good memories back. I know we rode the roller coaster at the Mall of America last month. I just can't get the picture in my head.
We've been saying good-bye for a while now, but it isn't very easy. The fact that his body is here but everything else is checked out is a good thing. It gets you used to him not being around. Jack has just come over and is going to have a sleepover at the hospital with me and Laurie. Tomorrow he has a class field trip to a nature center. He loves that stuff. He'll be okay. Joe is probably too young to know anything is wrong. Maybe he does and that is why he won't stop smiling and walking and giving us joy.
How incredibly lucky I've been to not only know Henry, but to be loved by him and to be his constant companion for so
long. After two years of hanging with Henry, I guess it is time for me to go home, love Laurie, Jack and Joe, find a job, and get on with life. So long, my superhero.
Wednesday, December 11, 2002, at 8:34 a.m.
We chose what day and time Henry was born, and now we'll do the same with his death. Everyone is in. My friend, (Rabbi) David Abramson, cannot be back from Israel in time to officiate at the funeral. The path is clear.
Laurie and I have been able to grab a few minutes together here and there, and we've had great conversations about Henry. Thank God for Laurie's amazing memory. She is helping me because I am still a blank. She reminded me how when Henry learned her cell phone number he became a big abuser. He'd call it every chance he got and left messages like, “Hi mom, It's Henry. I am just calling you to tell you how happy I am, how much I love you and how beautiful you are. See ya.” He'd do this over and over.
I'm glad my mom isn't alive for this. But I am sad that my dad is physically alone. We are here for him, as is my sister and his friends, but how hard it must be not to have someone to lay next to in bed and talk about how much you loved your grandson and hear that everything will be all right. Henry loves all of his grandparents, aunts, uncles, great aunts, great uncles and friends so much.
December 11 at 11:11 a.m.
I went with my dad and Jack to get Jack some big boy clothes for the funeral. I also bought Henry the biggest Swiss Army knife they make. He always wanted one, but Laurie knew
he was still too young. He doesn't have much of a palm, but I put his fingers around it and he is holding it now. Also, it is pretty ironic that we took Jack to get something to wear when he couldn't care less. Henry was the real clotheshorse in the family. He had style.
The clerk at the store asked if we were out having a shopping day. I wish I had the wherewithal to say, “No, we're removing life support from my son today.”
We're working on funeral and burial arrangements now. I ran into the manager of the Ronald McDonald house earlier and I found that I had to actually say, “My son is going to die today and we are going to be out of here by tomorrow morning.”
