Child’s Dying Wish: See a Life Saved

It is his dying wish to be here, in a cold operating room on an overcast morning. All 10-year-old David Junghans wants before he dies--and it is likely a matter of days--is to watch his doctor, a brain surgeon, make somebody else live.

Nobody except David had wanted it that way. To others, watching his doctor operate on a baby girl earlier this week seemed a morbid anticipation of death. But those who know him also acknowledge something deep inside the Huntington Beach boy--whose skull the doctor once probed in vain for the tumor that will kill him--had demanded it.

The scene is intense: an operating room full of doctors and nurses from Children’s Hospital of Orange County, wearing masks over sad faces, giving David their strange gift. Dressed in doctor’s scrubs, David talks matter-of-factly about the operation--”It is going well”--the same way he talks about his Star Wars picture cards.

Brought together in an unusual friendship, both boy and surgeon have responded in surprising ways. Rather than ask for Disneyland or a day with a baseball star, David wanted to sit in on the operation, in part so he could dream of becoming a brain doctor. He is a boy who cannot help but plan, even when there is no future.

For the young surgeon, it is part of a case like no other, one that gives him nightmares and has involved him emotionally at a depth that belies the stereotype of his calling. “We’re done,” says the doctor gently as he closes the baby girl’s skull. His face is white as bone. David says, “It’s time to go.”

All David Junghan’s life, he was hemmed in by fear. To him the roller coasters always were too high, and he thought it better to stay on the ground, by his mother’s side. He never climbed trees. Even today, as he dies, the fear of living has a hold on him, and daily he lays on the couch holding his mother’s hand, waiting for the next cartoon, and for the tumor on his brain stem to take him away.

David Has Outlived His Fear of Death

But in some ways, after the operation on Monday, David did outlast his fears. Something had changed in him. Ask him now if he’s scared to use the restroom without his mother close, or if he hesitates to go next door to play, he might say “Yeah.” Ask him if he’s afraid to die and he says “No!”

Even before the operation there were signs of change--particularly in David’s choice of a last wish. Marcia Schwartz of the Orange County chapter of the Make-A-Wish Foundation, which helped arrange David’s visit to the operating room, said there never has been a request to her organization like David’s, one that pointed to such an adult acceptance of reality.

The decision confuses the people around him; people call it “the wish.’

His father, Mike, said the choice disturbed him. But as much as he wanted to help shape his son’s last days with something grander, more fitting for a child, he allowed his son to do what he wanted. Even so, minutes before the operation, Mike tried to convince David not to go.

David’s mother, Susan, says she cannot understand it either, and figures maybe it has something to do with David wanting to be an adult when he knows he never will be, or that maybe David has put his doctor on a pedestal so high the choice was almost made for him. Or maybe it simply had something to do with wearing doctors’ clothes, clothes that, for David, mean curing people.

David’s doctor says “the wish” might have something to do with the friendship they developed, in fluorescent hospital rooms where there’s no wallpaper, only cold tile. It was one of harsh honesty and gentle affection that might have had less to do with who the two are, but rather where they are in their lives.

Dr. Michael Muhonen, 38, a tall, handsome man with a blossoming career, three little girls of his own and spectacles that magnify deepening lines on miserable days, says “the only way I could do this with him is if I treat him as if he is my own child.”

David’s face is complicated. When he looks in the mirror, his bloated, mildly paralyzed face grimaces, as if he hates what he sees there. David avoids his reflection. Much of the way he looks is from the steroids he takes to prolong his life; on June 14, with tears in his eyes, Dr. Muhonen gave him two days to live, but the drugs have extended that span.

While Brain Dies, Mind Remains Sharp

The tumor hasn’t affected David’s intelligence; he still is spry in mind and shrewd on the Monopoly board. At some moments, his eyes are empty; they telegraph death and the raggedness of the last two months of his life. His hair is butternut brown, messy, arranged that way by his mother to temporarily replace the strands radiation treatments steal, bald spots David doesn’t even know about.

Photos of the David from even one month ago look like a different child. On April 15, the day he was diagnosed, he looked about as healthy as a young boy can, with a freckled round face and thick light-cocoa hair. He had developed a slight limp, as if the ground was too hard. The only other thing that betrayed the malignancy inside him was a new forgetfulness.

“I’d say, ‘Get out your homework from your backpack,’ and he’d say, ‘It’s not here,’ ” his mother said. “That happened three times. The last time he . . . was punished. He’d just say, ‘It’s not here.’ ”

Doctors scanned his brain, and there was something there around his brain stem, a white blur, like a cloud. Today, David’s mother calls it “the white cloud,” the worst thing to ever happen to her.

When Muhonen saw it, he knew immediately there was nothing he could do to save David’s life. According to Muhonen, one in 10,000 people get anaplastic astrocytoma of the brain stem. He said half live for six months, and hardly anyone past nine months. It is impossible to cure.

Neither his doctor nor his parents have told David he probably will die soon. But Muhonen believes David knows, that he knew from the moment he saw the white cloud. It was then that an unspoken honesty was born between the two, a secret they communicate to each other when they hold hands. “It made my heart bleed,” Muhonen said. “I don’t know how else to explain it. I don’t know why. I care very much about David.”

For Muhonen it is hard to figure why the two of them touched each other; maybe, others say, it’s because he has three daughters and no sons, or maybe because it is enough to make a doctor cry when the only thing he can offer is no hope at all. Or maybe it is because he is young and is not worried about using his heart up, his wife says.

Those who know him say that’s just his nature. Muhonen says David comes to him in bad dreams and he cannot leave David behind when he walks through the door at night. When he plays Monopoly with one of his daughters, his mind drifts. On April 19, knowing that an operation would not save David, but only prolong his life a little, he operated anyway. Most doctors would not have done that, other doctors say. He wrote David a note once: “You can be my adoptive son.”

Normal-Looking Home Is Now Anything But

On the surface their life in a bright house on a quiet Huntington Beach street looks pretty--other kids drop by with Nintendo and mischief in their eyes. But it is an illusion, like plastic flowers from a few feet back. Only Nicole, David’s 7-year-old sister, is spared; her mind is too young to grasp the concreteness of death.

Susan, 40, says David’s father Mike, also 40, is losing himself in work. He sets up computer networks, dealing with integers and the science of machines.

Mike waits with a pager, hoping whenever it beeps that death is not at the other end. Mike tries to keep it inside, his wife says, and keeps control in finite and tangible ways, praying, buying books, doing research on tumors. But even those things haven’t helped: The first time Susan ever saw him cry was April 15, the day of the white cloud. Mike had been reading Internet printouts, stories about people with similar burdens. He learned brain-stem tumors are deadly; didn’t matter if they were malignant or benign. They all were failures, because they touch a place that shouldn’t be touched. He said: “We are helpless.”

Susan stays at home and watches her son; she has seen his face balloon and his limp worsen. Sometimes David can’t keep food in his mouth; sometimes it makes her mad.

To be sure, the hardest part, Susan said, was the merciless guilt that began the night of the diagnosis. In everyday objects and acts come quiet stabs of pain: a picture frame, notebook paper, cleaning a messy bathroom, reminders of the normalcy of her life on the PTA. She remembers a day, before the diagnosis, when David urinated all around the toilet, or when he forgot his math. She scolded him.

It feels shameful. And so she searches herself, things she might have done wrong during pregnancy, for old sins; they summon awful suspicions about the nature of God, and doubts about Heaven. She’s heard them all before: What did I do to deserve this? What did I do wrong? Why David?

Sometimes, she says, she wishes she could just leave the house, to get into their gray minivan and somehow outrun the sadness of it all.

But religion is like balm to her. She talks with her pastor a lot, when she wonders if there are no great truths in life. He tells her that the soul never dies; that guilt has no place in her house. Sometimes it helps.

It’s hardest at night, when it is clear that she has one less day with David, when she, literally, is walking in the dark, trying to get around a wall that stands somewhere between scientific understanding about David’s fate and her faith. “This,” she says, “is terrible.”

Surgeon and Parents Go Against Judgment

When last Monday came, David had somehow made it another week, from the power of the steroids. It was the day he was to get his wish to watch Muhonen operate. He said he does not idolize his doctor, only that he had seen in him the finer parts of human nature.

Dr. Muhonen did not want to do it: “What if he died from the stress of seeing it. . . . What if the baby died?”

The operation was basic. The baby’s skull plates had fused together too quickly and Muhonen had to undo it so her little brain had room to grow. David left his family behind for the operating room and sat in a black-and-purple chair a few feet away from the operation. A nurse explained the procedure. Adults talked to David gently. David left the room for fresh air for about 15 minutes; it had made him tired. His family hoped he wouldn’t go back; their voices shook as they tried to figure new ways to avoid the subject of death, trying to say “if” instead of “when.”

David went back, needing help walking, and sat alone and watched. Later, when Muhonen said the operation had been successful, Susan wished the news was meant for them. David had no words.

Later that day, lines in Muhonen’s face were deeper than even on normal late nights. “Terrible,” he told his wife, Linda. It didn’t feel right. He used the word “morbid.”

David, who did not flinch once during the operation, said he did the right thing, that somehow it all made him feel whole inside. After the operation, when he stepped outside and he went to lunch with his family, the sky still was cloudy.