‘6th Grade Will Happen’ for a Boy Who Beat the Odds

Defying all expectations and all appearances, David Junghans of Huntington Beach is getting well.

The 10-year-old, whose dying wish The Times wrote about last summer, has defeated a brain-stem cancer that claims 90% or more of its victims. His doctors call it a rare and largely mysterious remission. His parents call it a chance, however precarious, for a future they thought was lost.

“Sixth grade will happen,” said Susan Junghans, his mother, and there are no rushed-and-final trips to Disneyland. Susan feels safe enough to get her nails painted, to try restoring “normal daily life,” by picking David up from elementary school, going to the gym, resting her head on the sofa.

For all of this, however, David looks worse now than he did when Children’s Hospital of Orange County arranged for him to watch his doctor perform brain surgery in June. The cost of getting better is medicine with terrible, but temporary, side effects. His muscles don’t work right, and he’s 50 pounds heavier than he was before the tumor; his face is swollen, and his skin is so dry that shaking his hand is like grasping a palm full of salt.

The Junghans family--a young sister, a fluffy white dog, a computer-expert father and a tired-and-contemplative mother who stays home to care for David--now has some room for relief. But they also are burdened with a different sort of discomfort than when David had few days left, something counselors say often happens to families who survive the up-and-down existence of long-term illness. Susan likens it all to a bad roller coaster; even after the ride is over, she said, and you are overcome with gladness, you still feel a sick residual fear.

“He’s getting better,” she said. The focus now is on his physical appearance “so he can be a boy again.”

During a scan of David’s brain earlier this year, doctors found a white blur around his brain stem. One in 10,000 people get anaplastic astrocytoma of the brain stem, the doctors said; half live for six months, and scarcely anyone past nine.

In June, David’s dying wish was to watch one of his doctors perform brain surgery--a procedure that was impossible for him--on another patient. It was part of his fantasy--one that everybody around him knew was in vain--to become a brain surgeon someday. The wish didn’t make sense to doctors and those who know David. It was unusual, strange even, for somebody so young; those who know him would rather have taken David to a ball game.

David watched, and he did not flinch. And after the operation, friends and family said David seemed rearranged somehow, and that he seemed bolder about confronting his illness. Friends and family decided the operation must have meant for David a chance to feel, just once, like an adult before death.

Remission Happened Slowly, Gradually

Today, his balance is worse--his legs move with a slow, coltish wiggle below the knees that make falling down look as inevitable as it would be damaging--but his will, and his internal childish confidence, have blossomed. When he talks about becoming a brain surgeon, he says, “I believe it,” that it will happen. Several months ago, his answer to questions about career choices was a muttered-and-blank “I dunno.”

Displaying precocious professionalism, David says he’s sure he no longer even needs brain scans. “I don’t need ‘em for 10 years,” he says. Although David’s cancer is considered all but incurable, his doctors held out some hope that a therapy called gamma knife radiosurgery could help by focusing radiation on the cancerous cells.

The remission came not as a sudden triumph, but slowly. Over several weeks this fall, brain scans showed the tumor had stopped growing, no longer sending off tiny sprays of cancer cells to other parts of David’s brain. After reviewing another scan Nov. 23, doctors concluded it was dead.

Looking at the scan that day, Christopher Duma, the doctor who earlier this year performed gamma knife radiosurgery on David, loosened his tie. “I can’t believe it,” he said. “It’s miraculous. I’ve never seen a kid like this.”

Duma normally is business-like and matter-of-fact, even with good news. Now he says that, while the cancer could always return, as long as it is dead David will live a normal life.

Experts say David is among a select few known to have survived anaplastic astrocytoma of the brain stem. The numbers are so small that no exact survival rate is known, said Dr. John Kusske, chief of neurosurgery at UCI Medical Center in Orange. Nor does anyone know how likely is a recurrence, always a possibility with cancer.

David is “very lucky,” Kusske said. “Surviving a tumor like [David’s] has been known to happen before, but it is very unusual.”

Such remissions often are unexplained, said American Cancer Society spokeswoman Joann Schellenbach. “There are always a set of patients that seem to recover and it is not clear why,” she said. “The body does have its own defenses.”

The Junghans family is still trying to figure out a way to let go of the idea of certain death. Listening to good news from doctors hasn’t pushed aside months of anticipatory grief. Indeed, David’s mother says, she is sometimes afraid to let go of her fear, in case the doctors are wrong again.

Catherine Bailey, a clinical social worker for Hoag Cancer Center in Newport Beach, says the Junghans are experiencing something she sees time and again while counseling families.

“Things will never be the same for them. You wonder, ‘Will that shoe ever drop?’ . . . When somebody survives cancer, a whole new experience begins to surface.”

What makes it harder, Susan Junghan says, is “having faith that he is getting better on the inside [despite] how he looks on the outside.”

How he looks on the outside is the result of powerful steroids that control internal swelling caused by the tumor. The drugs cause bloating and, by supplanting the work of his adrenal glands, mean he likely will have to take steroids for life. But doctors plan to switch to weaker medication soon, and predict his appearance will eventually return to normal.

David needs help moving from couch to dinner table, using the bathroom and brushing his teeth. If his mother asks if he needs help in the bathroom, he sometimes ignores her out of shame, she says. Indeed, his illness has confused David too; he often is demanding and frustrated, unable to articulate what he wants other than by his refusal to use--and exercise--his weak right hand, instead asking for help with his milk glass.

David, Mom Discuss His Illness Honestly

The Junghans pray a lot, they say, more than they ever have, believing that God saved David through science. They are on “prayer chains” that stretch across the country, and they pray some more that the prayers will work.

But where once religion was like a balm to them, daily living now has also begun to offer peace. The family now has, in some way, made a point of embracing David’s illness, their way of staring it down until it goes away, like a boy locking eyes with a mean dog. Once there were no photographs of David after he got sick; now the Junghans’ home contains several pictures of David, bloated and looking sick, but placed among other “normal” pictures of his childhood. David no longer fears his own reflection. Mother and son speak frankly about his appearance and his confusion:

“Why am I so fat?” he asks, and Susan says, “I’d be fat too if I had to take all that medicine.” “When will it go way?” David asks. “I don’t know,” she tells him.

To be sure, the family is in a strange spot, even if they almost are clear of a panicked limbo. Their home is impeccably neat, perhaps, Susan says, because it is the one thing over which they feel they have complete control. Michael, David’s father, travels a lot and continues to lose himself in work; he comes home exhausted, working long hours so the family can afford Susan staying home.

Michael is careful with his feelings, and doesn’t talk about them much. But he is trying to make things normal again. He brings David to school in the mornings, and reads David mysteries before bedtime. David likes mysteries; no matter how many times the plot twists and complicates itself, he says, you still always find out what happens.