68 - A Mystery Story: Children, Cancer, and Covenant

A Mystery Story: Children, Cancer, and Covenant
By Diane M. Komp

"Behold, I show you a mystery!"¹

"The peace and healing of God that defy all human understanding can keep our hearts and minds, even when they don't satisfy our analytical inclinations.... Science only asks what and how, philosophy asks why, but it is religion that asks who. God's great mystery story is, after all, a 'whodunit.' "

Some theologians delight in turning simple truths into big mysteries. Admit it: you linger lovingly over the very enunciation of the word mysssssstery. It can mean denouement, end of argument. For us medical types, a mystery is anything but a finale. It is more a call to action, like Teddy Roosevelt leading the charge up San Juan Hill. How we hate unsolved mysteries!

What would you think if you had a mysterious chest pain and I said, "Ah, it's a mystery!" and walked away? So doctors (and others) squirm in the pews when we hear sermons about the mystery of suffering, describing only the symptoms and not suggesting an etiology or treatment. It is the mystery of suffering rather than a "scientific view of the world" that poses the greatest stumbling block to faith for people like me.

Tongue barely tucked in cheek, Philip Yancey says, "We dare not confine theology to seminary coffee shops where professors and students play mental badminton. It affects all of us."² Jesus often shot the birdie to children: "O Father, Lord of Heaven and earth, I thank you for hiding these things from the clever and intelligent and for showing them to mere children."³

Sophia Cavalletti refers to the "mysterious bond between God and

Diane M. Komp, M.D., is Professor of Pediatrics, Yale University School of Medicine, and Attending Physician at the Yale-New Haven Hospital. Three of Dr. Komp's articles have appeared in THEOLOGY TODAY, and she is interviewed in the March issue of LIFE magazine. A Deacon in the First Congregational Church, Guilford, Conn., she is the author of a newly-released book, A Window to Heaven: When Children See Life in Death (Grand Rapids: Zondervan, 1992).

¹ I Cor. 15:51.
² Yancey, Philip: Disappointment with God. Three Questions No One Asks Aloud, (Grand Rapids: Zondervan, 1988).
³ Matt. 11:25 (Phillips).

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the child."⁴ She tells of a three-year old who grew up without religious influence and had never heard the name of God spoken.

The little one asked her father, "Where does the world come from?" He responded with a secularized theory of the origins of the world but added, "However, there are those who say that all this comes from a very powerful being and they call that being God." His daughter joyously exclaimed, "I knew what you told me wasn't true; it is God, it is God!"

In a previous essay in this journal,⁵ I shared part of my personal struggle with the mystery and my journey to faith-reborn with the help of children with cancer. The God who made me knows that I was born to try to solve mysteries. Badminton racquet in hand, the diagnostician-detective listens to the stories of patients and their parents, mixing her metaphors and snooping for clues.

"Why dost thou stand afar off, O Lord? "⁶ It would sometimes appear that God doesn't take very good care of the godly. A pastor wrote to me of his personal struggle: "I worked as a chaplain ... and was at times overwhelmed by the seeming indiscretion of suffering. Many nights I lay in bed for hours wondering if I would ever be able to inspire people to believe in God when I wasn't always sure." But he goes on to add, "Rick⁷ was a teenager I got to know while I was there. He had ... cancer and more than anything it was the courage which he demonstrated that somehow gave me strength." Pastors and doctors, we scratch out our lines, chronicling the latest parable for this oldest of dilemmas.

A Three-month-old baby was admitted to the hospital with a cancer that began in the adrenal gland and spread to the liver. I had few encouraging words as I made rounds and my heart went out to Naomi, the young mother who sat at her firstborn's cribside.

"Do you believe in healing?" she asked. She and her husband were raised in a mainline Protestant church and had not returned since their wedding. Their early married life was full and happy but their baby's desperate situation now made her ask whether something important was missing.

She was acquainted with a woman whose life was changed by a charismatic renewal experience. This woman retreated into a room in her home that was a shrine for healing prayer and was increasingly alienated from her husband who did not share these beliefs and practices.

Naomi was drawn in her crisis to seek all possible alternatives that might help her child but was frightened that such a search might damage her marriage as well as her friend's. From this perspective, she asked my opinion about "healing."

⁴ Sophia Cavalletti, The Religious Potential of the Child, (Ramsey, N.J.: Paulist Press, 1983).
⁵ Hearts Untroubled, THEOLOGY TODAY, October 1988.
⁶ Psalm 10:1.
⁷ Names and minor details have been changed to protect privacy.

70 - A Mystery Story: Children, Cancer, and Covenant

Several years ago, I was visiting a Trappist monastery with a former brother of that community. During the prayers of the people, my companion asked prayer for "My friend Di and her ministry of healing." At lunch, several other guests asked me about my work. They were shocked to learn that I am a medical doctor. It is an interesting reflection on the semantics of health and medicine in our times that they did not expect a healer to be a doctor.

I shared with Naomi some of the struggles that others have faced with that question. I told her that I hoped that if she prayed for Henry to be healed, she would also be willing to ask her husband to join her to put their lives in God's hands, whether or not Henry lived. That weekend, she and Jim asked a hospital chaplain to baptize the baby and pray for his healing. On Monday, Henry was a little better but Naomi's appearance was transformed. She told me of the events of the weekend and said, "I don't know if Henry will be healed, but I feel as if I've been healed."

II

"Heal me, O Lord, and I shall be healed."⁸ In his allegory, The Story of the Other Wise Man,⁹ Henry Van Dyke tells us about a godly dream that was derailed.¹⁰ Artaban meant to join the three other Magi on their trip to Bethlehem but was detained en route, ministering to unfortunates he met along the way. His life's mission seemed a failure until he lay dying in a street on Easter morning and met the risen Christ. Jesus' words to Artaban (and the parents of my patients): "Inasmuch as thou hast done this unto one of the least of these, my brethren, thou hast done it unto me."¹¹

One of these blessed least, Baby Henry, did not survive his illness, and I wondered how one could "find God" while hoping for healing and stay faithful after that hope seems vanished. Several years later, Naomi wrote to me to tell me of a dream she had.

She dreamed that she and the baby were in the kitchen of the church where she grew up. Henry was crawling around on the floor and every time he got to a certain place in the center, he'd say "God!" He was very happy, like a child greeting a well-known and trusted friend or parent. In her dream, Naomi commented to a friend that it gave her goosebumps. It was as though Henry could see God although they couldn't. Then, the next time he reached the center, he died. His legs buckled under him and he threw his head back to look at her once more and reached out an arm. Naomi rushed over to him and grabbed his hand but it was too late. His eyes were blank and he was dead.

"Suddenly, God strode in and scooped up my little one and perched him on an arm. Henry sat on' God's arm with a hand on the shoulder, laughing and chattering with God." Naomi could see that the baby was

⁸ Jer. 17:14.
⁹ Henry VanDyke, The Story of the Other Wise Man, (New York: Harper & Row, 1895).
¹⁰ I am indebted to Hugh Kerr for calling my attention to Van Dyke's writings about children which he reviewed in "Writings that Have Shaped our Past," American Presbyterians, 66:294, Winter 1988.
¹¹ Cf. Matt. 25:40.

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fine and happy and he knew God well, but she was sad that she couldn't hold him anymore.

"God saw how sad I was and felt sorry for me so He handed Henry to me and said I could keep him for a while longer until he returned from the mission he had to go on. Henry was fine now although not as animated with me and I held him. It was as though he had been handed from a Parent to a trusted babysitter." He was in her arms, but watching God.

As God was leaving, Naomi asked, "Will I have other children I can keep?" She goes on, "God stopped and looked at me with so much love, it was overwhelming and said gently, in a way that made me feel especially cared for: 'Everyone's life has a plan.' "

Naomi held Henry's cheek to her own and tried to figure out whether God's look had betrayed any sorrow (that she would not get her wish) or amusement (that good things were ahead for her). "But there was neither, just love, overwhelming love. That was what mattered and that was what the answer was-not yes or no, but God's love."¹²

In the years since this mysterious dream was first shared, I've tried many times to write about it. I've failed to analyze it, but each time I've told it, someone says that they, like Naomi, were "healed." The peace and healing of God that defy all human understanding can keep our hearts and minds, even when they don't satisfy our analytical inclinations.¹³

III

"If I have prophetic powers and understand all mysteries...."¹⁴ Sometimes in medicine, we act as if we are prophesying when we are only prognosticating. Prophecy is not a "best guess." The problem of authority "lurks behind" every medical as well as every theological issue.¹⁵ Paul Ramsey leans on Barth when he interprets medical ethics from "the biblical norm of fidelity to covenant, with the meaning it gives to righteousness between man and man.... The practice of medicine is one such covenant. "¹⁶

Conflicts of culture, belief, and authority sometimes complicate the ability to form a covenantal healing partnership:

Jose' was three years old when a tumor was recognized. In an attempt to avoid radical surgery, chemotherapy was used to shrink the tumor. At the time that a CAT scan showed that the tumor was growing, the parents were told by a member of their Pentecostal church that he had a prophetic "word from the Lord" that the boy was already healed. They declined the surgery that was recommended.

We planned a conference with the parents and asked them to invite the church member and their pastor. As we reviewed the medical facts, the church member looked defiant but the parents looked in pain and fear at

¹² In the years since Henry's death, Naomi and Jim became the proud parents of two healthy babies.
¹³ Cf. Phil. 4:7.
¹⁴ 1 Cor. 13:2.
¹⁵ Jaroslav Pelikan, The Melody of Theology (Cambridge: Harvard Univ. Press, 1988), p. 18.
¹⁶ Paul Ramsey, The Patient as Person: Explorations in Medical Ethics, (New Haven and London: Yale Univ. Press, 1970).

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their child. The pastor thoughtfully asked our opinion about Jose's chances with and without the surgery.

"Pastor, everyone in this room is on the same team. We all want Jose' to be healed and we all want to be sure that God receives the glory however healing happens. We'd like you to lead us in prayer for Jose'." Even the church member enthusiastically joined in the most unusual prayer meeting that has ever been held in my office.

We agreed to wait a week and perform another CAT scan. When that showed further tumor growth, surgery was scheduled with the pastor's help.

The purpose of that conference-prayer meeting was not to pressure the family to accept surgery but to permit them to face the medical facts in a supportive environment where everyone was on their side.

The decision that was made for surgery was their own.

While some doctors openly admit feelings of rage and frustration toward unappreciative patients,¹⁷ others talk about loving difficult patients.¹⁸ Covenant-fidelity seeks a common ground that transcends individual or institutional authority and points to the perfect love that casts out fear.¹⁹

IV

"O death, where is thy sting?"²⁰ Death stings in New Haven at my favorite vegetarian restaurant where the walls proclaim the virtues of fiber and decry the evils of nuclear waste. They write your first name on the check at that restaurant in order to locate you when your meal is ready. Five of their waiters have spelled my nickname "Die" rather than "Di." Not even a popular princess came first to their minds, only their greatest fear. I asked one young man why he thought to spell my name that way. My question made him exceedingly nervous: "I am absolutely terrified by death. I can't even tolerate to say the word." I've never had the courage to tell him that I'm an oncologist.

Eight-year-old Jason Gaes has been through surgery, chemotherapy, and radiotherapy for a lymphoma, but he doesn't let the risk of death from "cansur" sting: "Every bodys godda die sometime." If Jason could meet my frightened vegetarians, he would tell them, "If you can find it get a poster that says 'Help me to remember Lord that nothing is gonna happen today that you and me can't handle together.' Then

¹⁷ Richard E. Peschel and Enid Rhodes Peschel, When a Doctor Hates a Patient and Other Chapters in a Young Physician's Life (Berkeley: Univ. of Calif. Press, 1986). "She tried to bite me.... When the people from the diet service came . . . she would either spit at them or hurl a fork or knife their way.... My natural urges were to choke her to death. In fact, it gave me a lot of relief to fantasize how I would kill her.... Still, every time she was admitted to our hospital, Duchess got from all of us the best of modern medical care" (p. 118).
¹⁸ Bernie Siegel, Love, Medicine and Miracles: Lessons Learned about Self-healing from a Surgeon's Experience with Exceptional Patients (New York: Harper & Row, 1986). "One woman who had breast cancer told me that her family thought she was crazy.... 'I told her I loved her' " (p. 220).
¹⁹ Cf. I John 4:18.
²⁰ 1 Cor. 15:55.

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hang it in your room and read it at night when your scared."²¹ Oat bran and sunflower oil may reduce the risk of disease, but they will not convert the heart and cast out fear.

One particularly discouraging day at work, I tried to cheer myself up. I said to myself, "Self, what did you do today that made you feel really good?" And myself answered, "I spent an hour with the parents of a child who is dying." The fact is, some of the most peace-giving moments in my adult life have been spent with such children and their parents.

One father who is a gifted storyteller wove a nightly bedtime story for his son. Ernie interrupted to ask, "If I die now and you and Mom don't get to heaven for a long time, will I forget you?"

"No way, son," Dad answered. "What's a long time, anyhow? Jesus died 2000 years ago and doesn't that seem like just yesterday?"

Who but a loving heavenly Father can coach a human dad in the fine art of stinger-removal? A mysteriously beautiful fellowship, this fellowship of suffering.

V

"We shall not all sleep but we shall all be changed."²² People who describe their experiences with cancer often use metaphors associated with change or conversion. One young woman without a Christian background used the term "passing from death unto life" to describe to me her understanding of survival of childhood Hodgkin's disease and her plans for a career in medicine to fulfill her sense of being saved for a purpose."

These young people seek a meaning in their experience. In the search for meaning, Kreeft says that science only asks what and how, philosophy asks why, but it is religion that asks who.²³ God's great mystery story is, after all, a "whodunit."

Tom was 19 years old when his cancer recurred, but he refused to accept the relapse as a death sentence. He declined further chemotherapy because there was no promise of cure even if he endured the side effects, but he still believed that he would find a way to be healed of cancer, to become an "exceptional cancer patient."

While he was in the hospital, the tumor in his cervical spinal cord advanced to the point that he was quadriplegic. He still would not believe that he was going to die from his disease, and he worried that permitting such negative thoughts would interfere with "positive healing thoughts."

He was discharged home on his twentieth birthday in this condition. When I visited him at home, he was able to move only his head and neck and required total nursing care. When we were alone, he told me of a vision that came to him at home while he was meditating.

²¹ Jason Gaes, My Book for Kids with Cansur, (Melius and Peterson, 1989). Jason's parents and editors had the wisdom to preserve his spelling and grammar, and I have followed their example.
²² I Cor. 15:51.
²³ Peter Kreeft, Making Sense out of Suffering (Ann Arbor, Mich.: Servant Books, 1986).

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He was in a beautiful garden and saw a man seated on a bench. The man's fingers were like roses and he walked with him in the garden and talked to him. The man touched him and Tom reported that he moved in his bed for the first time in months. He did not want to leave the garden or the man's presence but the man went ahead and told Tom that he could not come with him yet.

I asked him if he knew who the man was. He said, "I know it was Jesus." Thinking of the images he described, I thought for sure that he must be recreating the old gospel hymn, In the Garden.²⁴ Tom was confused by my question because he had never even heard of the hymn. When I sang it for him, he did not recognize the melody but was excited because he recognized in the words the parallel image to his vision.

Two days later, he told his parents that he would not live through the night and died peacefully in his sleep.

Surrounded by so great a cloud of witnesses, let us solve with patience the mystery that is set before us.²⁵

I come to the garden alone while the dew is still on the roses
And the voice I hear failing on my ear the Son of God discloses.

Refrain: And He walks with me and He talks with me,
            And He tells me I am His own;
            And the joy we share as we tarry there
            None other has ever known.

He speaks and the sound of His voice is so sweet the birds hush their singing
And the melody that He gave to me within my heart is ringing.

I'd stay in the garden with Him though the night around me be failing
But He bids me go, thro' the voice of woe His voice to me is calling.

²⁴ In the Garden, words and music by C. Austin Miles. (Copyright by Hall-Mack Co., 1912).
²⁵ Cf. Heb. 12:1.