She kept the information to herself, but she was not satisfied. She had to know more. For the next 18 months Susan read, researched, and wrote to anyone whom she thought might give any additional information.
Susan claims to have one of the largest VHL libraries in the world. And I believe her! She telephoned across the United States, finding the places where they were actually doing VHL research. Over the course of Craig’s illness, Susan has become highly knowledgeable about VHL and keeps abreast of medical developments.
VHL is associated with a preventable form of blindness. Because it is a dominantly inherited disease, this means that 50 percent of the offspring of persons with VHL will eventually develop it. Craig’s sister, who is now 40, had a tumor when she was in her twenties. It appears she will not have any more.
When she finally told Craig about VHL, he said simply, “I knew something serious was wrong. And the tumors kept coming back.”
About that time Susan remembered how much Dr. Miller’s compassion had enabled her to cope. As she thought about her experience, she concluded that nurses could benefit patients by expressing their care. It was then that she decided to enter nurse’s training. After graduating in 1984, Susan applied for and received a job in the pediatric neurology department at Johns Hopkins where she has remained since. To no one’s surprise, Susan is an excellent nurse.
In September, 1986, Susan realized he was showing symptoms of yet another brain tumor. That’s when I came into the picture: Susan asked me to take Craig as a patient.
After I agreed, we did a CT scan, and I had to tell them that it appeared that he actually had three tumors. After some preparation, I removed the tumors and, fortunately, he didn’t have any surgical complications. He did, however, have endocrinological problems which required several weeks to regulate. A little while later Craig developed another tumor in the center of the brain with a cyst in it.
A gifted chief resident named Art Wong assisted me. We had a difficult operation because we had to split the corpus callosum that connects the two halves of the brain and go right down to the center to get the thing out.
The operation went well with no problems. Craig did fine post-operatively. They were praying that this would be the last surgery while knowing the statistics worked against them. Craig continued to recover — slowly but markedly.
Then in 1988 came the dreaded news: Craig had developed another tumor, this one in his brain stem. It was in the pons — an area considered inoperable. Yet someone had to try. Craig and Susan asked me to do the surgery.
“I’m sorry,” I told them. “I just can’t fit Craig into my operating schedule.” As Susan well knew, I was already backed up with patients. Even though I believed I made the right choice, I felt terrible having to say No.
“I’d like to have you go to one of the other neurosurgeons here at Hopkins who specializes in vascular problems,” I said, “because the tumors are vascular.”
“We’d really like you to do it,” Craig said in his quiet voice.
“If there’s any way possible,” Susan said. “We know how busy you are, and we understand …”
After a lengthy discussion and using all my persuasion, Craig did transfer to the other surgeon’s care. This man considered using a new procedure, called the gamma knife. However, after talking with the Swedish inventor of the procedure, he decided it probably wouldn’t work on Craig’s particular type of tumor. They would have to rethink their options.
In the meantime, Craig started to deteriorate rapidly. He lost the ability to swallow, having developed such weakness in his face that it felt numb, and he started having severe headaches. On June 19, 1988, Craig had to be admitted through the hospital emergency room.
Susan called me. As I listened, I knew I couldn’t stand by and let him get worse. I had to do something. I paused as I tried to sort out my emotional reaction from my professionalism. I heard myself saying, “OK, I’m going to bump somebody off the schedule. We’ll get Craig into surgery.”
We scheduled him for the next day, June 20, at 6:00 p.m.
Both of them became ecstatic. I don’t think I’ve ever seen two happier people. It seemed that just knowing I would do the surgery gave them a greater sense of peace.
“It’s all in God’s hands,” I told them.
“But we believe you let God use your hands,” Craig said.
Although I had consented to do the surgery, I had to explain to Craig and Susan that this tumor and cyst were probably in the brain stem. “I can’t tell for sure until I go inside and investigate,” I said. “And if it’s in the brain stem — “ I paused, not wanting to tell them I wouldn’t be able to do anything.
“We understand,” Craig said.
Susan nodded.
They grasped the odds they were facing.
“But,” I added, “any part of the tumor not in the brain stem, I’ll take out.”
“It’s going to be all right,” Susan said. And she meant it. It felt a little strange having the patient’s wife encourage me—for me to be on the receiving end of morale boosting.
Although I agreed to the surgery, I still did not know the best course of action. I had bandied some thoughts around, and I consulted other neurosurgeons. Nobody knew what to do about this particular tumor.
“I’m going to go in there and at least investigate,” I finally said. I didn’t promise the Warnicks anything—how could I? They didn’t seem to need any kind of extra assurance—they were more at peace than I was.
It was the late afternoon before surgery when I found all those praying people gathered in Craig’s room.
It was a tough operation. The tumor had so many abnormal blood vessels coming to and going from it that I had to use a microscope to see precisely where the tumor began so I could remove it. I looked up and down the brain stem at every angle but couldn’t find anything except that his brain stem was badly swollen.
I thought, The tumor has got to be in there within the brain stem. So I stuck needles into the brain stem. The brain stem is considered untouchable because it has so many important structures and fibers that even the slightest irritation can cause major complications. I had already suspected that the tumor might have a cyst in it. If so, if I could reach the cyst and withdraw some fluid, it would release some of the pressure on Craig’s brain.
I did not find a cyst but instead provoked terrific bleeding from the sites of the needle punctures. I couldn’t get anything else to come out. After eight hours, sometime around 2:30 in the morning, we closed Craig up and sent him back to the ICU. He had gone through a lot, and I assumed he’d be totally wiped out.
I was astonished when I walked into the room the next morning. Craig behaved as if he were preoperative. Although lying in bed, he was smiling, moving around, even making jokes.
Once past my shock, I told Susan and him that I thought this tumor was clearly in the middle of the pons—part of the brain stem.
“I’m willing to open the pons up,” I said, “but I couldn’t do it last night because I’d already been operating on it for eight hours, and I was tired. I probably wouldn’t be thinking right. I like to make sure I have all my faculties working when venturing into no-man’s-land—something I just don’t want to attempt in the middle of the night.”
“Do it,” Craig said.
“There isn’t much choice, is there?” Susan asked.
“There is at least a 50 – 50 chance that Craig will die right on the table,” I told Susan and Craig. Those weren’t easy words to say, and yet I had to tell them all of the facts, especially the unpleasant one. “And if he doesn’t die, he could be paralyzed or devastated neurologically.”
“We understand,” Susan said. “We want you to go ahead anyway. We are praying for a miracle. We believe God is going to do it through you.”
“What have we got to lose?” Craig added. “Otherwise it’s death anyway.”
I scheduled the surgery for a few days later.
Although I’d known Cra
ig and Susan were both strong Christians, more than at any other time, I saw it evidenced then. They kept saying, “We want a miracle, and we believe we’re going to get one. We’re praying for God to give us one.”
An orderly wheeled Craig to the operating room, and the procedure began. Craig lay face down on the operating table, his head held tight onto a frame so it couldn’t move. Once again, doctors shaved and scrubbed his head. A nurse placed a sterile drape over Craig with the small plastic window over the surgical site. And the surgery began.
Again it was tough going. Eventually I got down to the side of the brain stem. “I’m going to open up a little hole in the brain stem,” I murmured to my staff. I took a bipolar instrument (a small electrical coagulating instrument) and opened up the brain stem. It began to bleed profusely. Every time I touched the stem, it bled. My assistant continued to suction up the blood to keep the site clear while I asked myself, What do I do now? I prayed silently and fervently, God, help me know what to do.
I always pray before any of the operations, as I scrub, standing at the table before I begin. This time I was acutely conscious of praying during the entire surgery as I kept thinking, Lord, it’s up to You. You’ve got to do something here. I had no idea what to try.
I paused and stared into space as I said to God, Craig will die unless You show me what to do. Within seconds, I knew — a kind of intuitive knowledge filled my mind. “Let me have the laser,” I said to the technician.
I asked for a laser beam simply because it seemed like the most logical choice. Using the laser, cautiously, I tried opening a little hole in the brain stem. The laser enabled me to coagulate some of the bleeding vessels as I went in. At last I got a tiny hole opened with minimum bleeding and went inside. Feeling something abnormal, I teased out a little piece of it. It was probably tumorous, but it was stuck. I tugged gently, but nothing came out. Again I hesitated, not wanting to become too aggressive. I couldn’t open up the hole any larger because I was right down at the brain stem.
The anesthesiologists checked their evoked potential monitors, which showed the electrical activity coming from the brain.
“The evoked potentials are gone,” one of them said.
The evoked potential had died—just the way an EKG goes flat when the heart stops beating. This flatness indicated no brain waves or activity on one side of his brain — a sign of severe damage. The brain operates on electrical activity, and the activity coming through the brain stem on that side was gone although the other side remained undamaged.
“We’re in here. We’re going to persist,” I said, not allowing myself to consider how severe the damage might be. God, I just can’t give up. Please guide my hands. I kept at the tiny hole in the stem, my hands easing, pleading, begging, pulling gently. Finally the tumorous growth started coming out. Gently I tugged, and suddenly it all came free in one gigantic blob.
Immediately the brain stem shrunk back closer to its normal size. But while I felt pleased that I’d gotten the growth, the damage to Craig had been done. Although I tried to keep from thinking about what would happen, I knew too well. Even if Craig did survive (which was highly unlikely), he would be a “total train wreck.” He would certainly be comatose and likely paralyzed. Yet I had kept on because I knew it was the right thing to do.
The surgery continued for four more hours. When we closed up, I felt terrible. Aloud I said, “Well, we did our best.” I knew I had, but my words brought me no comfort.
The next part of the story is told by Susan, who later taped a record of Craig’s story, including her experience during the first 1988 surgery that I have just described.
SUSAN WARNICK:
A lot of friends and family members came to stay with me during the surgery that night, and I was thankful for their presence. When people weren’t talking to me, I spent most of the time reading my Bible. I wanted to trust God and to push away all my doubts. But the doubts were there, gnawing at me. I couldn’t grasp what was happening or understand why I was falling to pieces. I had had real confidence in God for such a long time. I was so certain that we would have a miracle. Over the years, anytime Craig showed signs of discouragement I was there to motivate him, to let him know I was with him and that we could face anything together because God was in charge of our lives. I had been so strong, and now I was falling apart.
That night nothing snapped me out of my depression. I remember saying to some of the people in the room, “I’ve never said this before, or felt this way before either, but right this minute I feel totally defeated. Maybe God wants me to understand that enough is enough. Maybe Craig and I can’t handle this anymore. Maybe … maybe it’s best if it ends this way.”
Naturally they tried to comfort me, but I could do nothing but wait and worry.
Sometime in the middle of the night, I looked up and saw Dr. Carson coming into the waiting room where I sat with my family. He explained about the location of the tumor, the brain damage, and said something like, “As I said before, this was likely to happen. At best, Craig will probably live a few more months and then die.”
Dr. Carson has a reputation of being unflappable and showing no emotion when he talks to families. He has a soft, kind voice, so quiet that many times people have to strain to hear him. Most of all, he is always so calm.
I held myself rigid as I listened to what amounted to Craig’s death sentence. The more Dr. Carson told me, the more upset I became. I didn’t cry, but my whole body started trembling. I was aware of this shaking and, the more I tried to control it, the more convulsive it became. Craig is going to die … Over and over that sentence rang through my head.
Dr. Carson did say that he would try to remove this tumor if Craig and I were willing to go back to surgery again. But he also told me that Craig would definitely be paralyzed on one side of his body, “ … and there’s a possibility that he will die.”
For a few minutes I hardly noticed Ben Carson or heard anything. Craig was going to die—after that nothing much registered. Dr. Carson was standing in front of me, trying to comfort me, and I knew he could never find the words that would bring me peace. After 14 years of researching VHL and having it drilled into my head that if Craig ever had a tumor in his pons, he would die, I knew what was happening. My Craig. I was going to lose him. Craig was going to die.
“The tumor was in the middle of the pons,” Dr. Carson repeated. At that moment I looked up and saw Dr. Benjamin Carson, the human being. Naturally he was tired, and I could see the weariness around his eyes. But it was more than that.
This isn’t the way he usually looks, I thought. Something’s different about him. Then I knew. Dr. Carson was discouraged. Defeated.
I realized that I had been so caught up with my own confusion and pain, I had only thought of Craig and me, never considering what might be going on inside Dr. Carson.
Here was a man who masked his emotions well, and yet he wasn’t doing it well right then. I thought, This man removes half of people’s brains. He does surgical procedures no one else can do. Yet I read a sadness in his face, a look of despair.
Momentarily I forgot about Craig and myself and I felt sorry for the doctor. He had tried hard, and now he was frustrated and really down.
He finished talking, turned, and walked down the hall. As I watched him, I kept saying to myself, “I feel so sorry for him.”
I ran down the hall and caught up with him. I hugged him and said, “Don’t feel so bad, Ben.”
I went back to the room. A patient had gone home that day, and the nurses let me spend the night in the unused room. As I lay on the bed, I stared at the ceiling. I was angry—so angry.
I couldn’t remember feeling that much emotion at anytime before.
“God,” I whispered in the semidarkness, “we’ve been through so much. We’ve seen a lot of positive things come out of all of this.
“Even though I’ve had moments when it was difficult for me, especially in our early years together, this is the worst. I’m mad a
t You, God. You’re going to let Craig die and do nothing about it. If You were going to take him, why didn’t You do it in 1981? Or when he had his first tumor? If You’re so loving, how can You let a person like Craig go through this much only to end up dying?
“Nothing makes sense anymore. You’re going to make me a widow at 30. Craig and I will never even have a child.” I recalled other women who had lost their husbands telling me that having children after their husbands’ death gave them purpose, a reason to live. “They at least have children! I don’t have anything!”
I hurt so deeply inside, I wanted to die.
A few minutes later I went into the bathroom and saw my reflection in the mirror. I didn’t recognize the face that stared back at me. It was such a weird experience, and I stared at the stranger before me.
I walked back to the bed, more miserable than ever. I felt as if my whole life had been a mistake. “Useless! That’s me. All the effort, all the caring—for nothing. And how can I live without Craig? How can You expect me to go on without him?”
The venom poured out of me. I blamed God for putting me in the position of making Craig my whole world. Now God was going to take him. I cried and let my anger spew out.
Exhausted, I finally stopped talking. In a moment of quietness, God told me something. Not a voice, and yet definitely words. Craig is not yours that you should demand to keep him. He doesn’t belong to you, Susan. He is mine.
As the truth came through to me, I realized how foolish I had been. Craig and I had surrendered our lives to Jesus Christ back in high school. Both of us belonged to God, and I had no right to try to hold on now.
Only a few days before I had been listening to a Christian radio program. The preacher told the story of Abraham taking Isaac up the mountain and of his willingness to sacrifice him—the person Abraham loved most in life.*
I thought of that story and said, “Yes, God. Craig is my Isaac. And, like Abraham, I want to offer him up to You.”
As I lay on the neat hospital bed, a wave of peace slowly washed over me, and I slept.
Gifted Hands Page 18