THE VIRGINIAN-PILOT
Copyright (c) 1996, Landmark Communications, Inc.
DATE: Friday, October 11, 1996 TAG: 9610110033
SECTION: DAILY BREAK PAGE: E1 EDITION: FINAL
SOURCE: BY LIZ LEYDEN, SPECIAL TO TEENOLOGY
LENGTH: 350 lines
When they woke it was dark night. Gretel began to cry.
``Hansel, how shall we ever get out of the wood?''
Hansel said, ``Wait a little while until the moon rises and we will find our way.''
- From ``Hansel and Gretel''
by the Brothers Grimm
INSIDE THE BEDROOM at the top of the stairs in the tidy house on the hill there is the sound of snoring. But brother and sister are wide awake, flinging pillows at each other. Inside their laughter is the noise. It is a rasping gasp, and it is coming from the girl.
Her brother tries to ignore it. He is grinning, but his eyes are impenetrable. Outside, the sun sets and clouds stretch pink streaks across a darkening February sky in Washington, D.C. It is a winter sky that the boy, James Holling, will forever remember as his first season far from home, the season in which he first began to hear the sound of death.
The sound is a sick girl's labored breathing. But to James, it is more sinister. What he hears, what he imagines it to be, is the sound of the tumors growing in his sister's skull.
Rachael Holling's headaches began one summer between tea parties and Barbie dolls. She was 8, James 14. Suddenly she slept more than she played; he would have to tease her two and three times before she heard him and squealed her displeasure. James knew then that something was off.
When Rachael was born, James was 6 and their brother, Michael, a cool 8 - much too big for babies. But not James. With a father who drove a truck and moved the family every couple of years, his sister became his best friend. James bought Rachael pink Power Rangers to play with his blue ones. Meanwhile, rare, stubborn malignancies known as chordomas were slowly growing inside Rachael. By the time her headaches began, there were enough hard tumors inside her brain to connect into a star.
One operation led to another and another, until Rachael was 10 and the doctors were telling the family not to count too much on 12. They were living in Cleveland. Hope brought them here.
The Ronald McDonald House sits on a hill in one of the most religious neighborhoods in Washington. Two houses down on one side is the Franciscan Monastery, on the other is the chapel of the Poor Clares of Perpetual Adoration. A few blocks over is Howard University Divinity School and just around the bend, Catholic University and Trinity College. The people who work at Ronald McDonald House do not know exactly why it was built where it was. Maybe it was coincidence, a confluence of favorable real estate opportunities. Or maybe someone decided there was no better place for a house for sick children.
When James Holling arrived in November with his sister and mother, he thought their stay would be brief. The doctors at George Washington University Hospital would patch her up and send the family back home.
There was an operation, but it did not go well. Complications arose. Rachael's prognosis is uncertain, and 10 months later, James is still waiting on his sister. He will not go home without her, one way or another. A young man's life is on hold until his sister dies. Or lives. But no one knows which will happen, or when. And so they wait.
Here is what it is like to be a 16-year-old boy. Life is perfidy. Your voice betrays you. Your body betrays you. Your appetites betray you. You want to be yourself, if only you could figure out who that is. You are big and little. Strong and weak. Fearless and frightened. Your eyes meet the eyes of adults, then shyly grope the floor. You are ungainly in body and soul.
James Holling is 16.
His is a more complicated 16 than most.
During her operation in February, Rachael suffered a stroke; her speech became impaired; her right side became paralyzed; she became lethargic; her face and legs bloated.
In the weeks afterward, James connived to make his sister walk. He hopped in her wheelchair when they went somewhere, so she had to trail him on foot. Sometimes he bribed her. It was effective. The medicine she was taking made her ravenous. In return for a few steps, she got a brownie. Through this modest commerce, her legs got stronger, bite by bite.
But this thing today, this is bad. Sweets will not help here. James is standing over Rachael as she screams. Their mother, Annette, kneels next to her, stroking her head. The little girl is twisting in her wheelchair, her eyes on the thing that scares her the most - a needle.
The hospital needs to take blood, but Rachael's body has become so bloated from medication that the nurse cannot find a vein. Her fingers search the skin. Tap tap tap. Rachael whimpers.
James steps in. He touches his sister's back. He rubs small circles with his fingers. ``It'll be OK, Rachael. Let them put it in.''
But Rachael thrashes. The nurse turns not to Annette but to James. ``This is a kid who's been through a lot, yes? Or is that putting it mildly?''
James nods his head hard, closing his body around Rachael's, arms stretched around her chest, head tucked into her neck, a tender hammerlock. He is so intent on smothering her terror, on buttressing her with his strength, he does not notice the nurse, who has stopped for a moment, just to watch him.
After it is over, James puts his hands on his sister's knees.
``Rachael, you are such a baby. I didn't know you were, but after that, I do. A big baby.'' He draws his words out like spun sugar and watches her eyes.
``Mom, did you see what a baby Rachael was?'' he says, toying with a smile. Rachael looks ready to laugh.
``C'mon, baby, lemme give you a ride.''
``Ooh.'' Rachael's head bobs up and down, excited. She opens her mouth, but what comes out is not words, but a stream of muffled syllables ending in ``Jay.'' James.
James tips back the wheelchair and spins her around in circles, wheeling her down the hall toward the big, red exit sign.
The first thing James does is lean over the booth and flip through the jukebox. Up and down the list with his fingers until, bingo! James plugs in a quarter, he cranks up the scratchy sound, and Mariah Carey blasts through the restaurant. Graying heads swivel at the first pop-syrupy note, half-smiling, half-groaning. Kids.
It is lunch time at the Tastee Diner in early March, and finally the trees sport tiny green buds. It has been a long winter. James is telling his story to a stranger.
Being here, he says, is his choice. There is family back home to care for him. But he wants to be here, even though the bad times have been awful, like the operation Rachael almost did not survive.
``It was horrible. I was so scared. They told us only the negative. She might be retarded, she might not. She might make it, she might not. My mother was flipping out and I was trying to hold things together, trying to believe that my sister was going to be OK.''
James understands the severity of his sister's condition. He speaks frankly about the tumors, which are resistant to surgery or drugs; he speaks of trials yet to be faced, all but one. He doesn't speak of that. Every thought ends with hope.
``Rachael's always been crazy and stubborn. She'll be back to being a pain any day now.''
James remembers a summer night at a drive-in, before Rachael was sick. ``We were out pretty late after the movie. My father and brother were there, too. Rachael was about 7 and went with her pajamas on. She slept the whole ride home, and when the car stopped, she tumbled out. . . The family started toward the house, except for Rachael. She went across the lawn toward the neighbor's, she was so tired. We all stopped and laughed watching her then. I ran to her and took her hand and led her back home.''
He smiles gamely. ``I figure I'll have a life when I'm 20. Right now I want to be with my sister. I wouldn't do anything differently.''
James keeps his hair at stubble length, to keep the look smooth, and worries about the pimples he's begun to notice. He plays Nintendo for hours, reads comic books and listens incessantly to rap music on his Walkman. Each morning a tutor comes to Ronald McDonald House; they study for two hours.
James doesn't sleep. He has hardly slept in weeks. He doesn't know why. No reason, as far as he can tell. At night he roams the building, occasionally encountering a hollow-eyed mother or father from another family, but mostly he is alone. When the sun starts to rise, he lies in bed with a beat pounding in his earphones and watches the light come through the windows. It's surreal, watching the world wake up.
During down time at the house, James goes looking for Barbara Silverman, the operations manager who is also his friend. Silverman's piercing eyes miss very little. She likes to tease James about the time she saw two flirty girls approach him on the Metro. And lately, she worries about him. After James returned home from the Tastee Diner Barbara informed him he was to go to bed early, break the cycle.
Silverman runs the house with a staff of four, and more than 60 volunteers. Ronald McDonald House is a place that draws survivors: mothers whose children have died, a young woman who is in remission. They volunteer their time because they know. They have lived through a child's sickness. Buddhists come twice a month to scrub the bathrooms. A Jewish group cooks Christmas dinner each year. Time is marked by chemotherapy cycles and surgery dates. There are no report cards or school breaks, so volunteers work hard to create happy moments: special breakfasts, Valentine's Day dinners for parents, Halloween and Christmas parties. There is forced gaiety, but there are few illusions. Rachael is a very sick little girl, but she is not the sickest child they have seen, not even the sickest currently in residence. There is a 15-year-old girl with a sarcoma, here with her dad. She is the sickest, for now.
For James's mother, the staff's presence is invaluable. She spends most of her time at the hospital.
``I'm glad to have James over there. The people are all so nice - they really care.'' Annette Holling and her son look much alike. When Rachael got sick, her husband left. A housewife, she began studying computer programming, but she cannot seek work while she is in the hospital; there is no time. She still pays for the apartment in Ohio that they've not set foot in since November and is beginning to worry that the insurance company will stop paying for her daughter's treatment. And then there is James.
``He has always been so special. I hate him being alone so much, but he knows Rachael's needs are greater than his right now. He never complains. How can you give him hope for her fight and prepare him for letting go at the same time?''
James is growing up. For the first time ever, he went grocery shopping alone. He considered buying shaving cream, but decided that would be imprudent, that this purchase could wait a few more weeks. Instead, he bought food. His eyes watched and widened as the cashier's fingers rang up the bill, and he nervously wondered if he would have enough money to pay.
He did. He returned home with bags bulging with frozen pizzas and fruit roll-ups and Cokes.
Big and little.
One day, James met a girl at the hospital. He saw her pass by their room a couple of times, and one day, while he was watching TV with Rachael, she walked right in. She was cute. She was visiting a sick cousin. She and James chatted for a few minutes and retreated to the lounge, because some conversations must be held in private, away from the giggles of one's little sister.
He on the couch, she in a chair, they talked about themselves. Recently, the girl began visiting her cousin every other day, a stepped-up schedule that James suspects might be related to him. James wonders if he is old enough for his first date.
The question lingers for two days, then becomes irrelevant. There is bad news. Doctors say Rachael's tumors are growing. More than half of those removed in the February operation have grown back. There is a large one pressing on her carotid artery; more surgery could mean she would bleed to death, especially since the Hollings, who are Jehovah's Witnesses, are opposed to blood transfusions. Options are disappearing.
A doctor says something about one last chance. Something radical, something experimental, in Boston. There is an air of finality about this that James mistrusts.
He seeks refuge in the hospital garden. The tiny courtyard is tucked between trees and bushes so dense that the white brick of the building almost disappears.
He sits on a hard bench, elbows on his knees, chin in his hands. The treatment in Boston involves massive doses of proton radiation, doses so powerful that Rachael would never again be able to receive radiation of any type. It is a last chance, in every sense.
James realizes he is holding the end of a short, frayed rope. Here, without his sister, without his mother, speaking only to a stranger, he lets go. He does something almost unthinkable for him. He talks about himself.
``I miss my grandparents, my brother, Michael, my friends. I want to watch cartoons in my house and sleep in my own bed and go play basketball all day. I'm scared. This thing in Boston is it. Things were never supposed to get this far. . . ''
Then:
``I'm not ready for her to die.''
There it is. He shakes his head, hating that he's finally let the words loose.
What happens after you die?
Jehovah's Witnesses believe that Armageddon is almost upon us, and that the good will be saved and the wicked annihilated. It is an either-or, good-bad, right-wrong theology. James went to church with his mom and prayed and reasoned and bargained as Rachael got sicker and sicker, but lately, he has stopped going. He's not sure why, except that it seemed like a good time to stop.
In the sunlight in the hospital garden, James's eyes glisten. He looks around for somewhere to go, but there is only the hospital.
That night, while Rachael sleeps, he tiptoes past her bed and stands in the empty hospital corridor, a 16-year-old boy, strong and handsome and scared, weeping.
When the family steps off the train in Boston after a 10-hour trip, the streets are splattered with rain. It is July. They will stay at the Y; it is what they can afford.
The last thing James did before he left Washington was call the girl he had met. They make a date for a date, whenever he comes back.
The three Hollings meet with Rachael's new doctor, all four people crammed into a tiny examining room. The staffers suggested that James wait outside, but both he and his mother said no, he should be there.
James sits behind an examination table, listening to physician Eugene Hug describe the treatment.
Hug has a great belief in the power of proton beam radiation. He estimates that only 150 people a year get chordomas, and maybe a tenth of them are children. The only cure is to stop the growth. It might work, it might not. Even then, the tumors will not disappear, only become dead tissue. And new ones could always appear.
The doctor is being thorough. There are risks to this procedure, he explains. Blindness. Additional cancer from the radiation. Damage to the pituitary gland. Brain damage. Seizures. Memory loss. Permanently dry mouth. Arthritis in a 10-year-old body.
By the time Hug finishes, only Annette is listening. James's head is in his hands. There are limits to what he can endure. Here in the garishly lit examination room, as the physician speaks, the boy who has been lying awake all night, night after night, has finally found sleep.
That night at the Y, there is a message waiting for Annette, from Ronald McDonald House. She reads it and says nothing.
When Rachael has gone to sleep, Annette tells James. The 15-year-old girl, the girl with the sarcoma, died. She and her dad had arrived at Ronald McDonald House around the same time the Hollings had, in November. Now, the father is going home alone.
Outside, a thick haze rolls over Boston Harbor.
The treatments have begun. They are grueling. James packs a duffel bag. he is going home to Ohio - for a week at most, he tells Rachael.
One week passes. James sees his brother and grandparents and sleeps in his own bed. He watches his brother graduate from high school. He hangs out with friends. He does not enter one hospital or see one doctor or inhale the smell of a single sick child. And at the end of a week he calls to ask permission to stay longer.
Another week passes, and then a third and a fourth. Annette is prepared to let him stay away as long as he wants; staying away has always been James' option, and it still is. Besides, Annette Holling sees what the radiation is doing to her daughter, and it is just as well James is not there.
But at the end of the fourth week, James calls to say he is coming back. He misses his mom. He misses his sister.
Rachael and Annette are waiting for him at Logan airport. Rachael lopes awkwardly to him, arms spread wide.
He is wearing a new Tommy Hilfiger jacket, and a neatly knotted Looney Tunes tie. As they walk to baggage claim, he tells them about the family and about his brother's friend's red Mustang, which he drove. He says he went to a party and got drunk for the first time in his life. And the last time, he adds importantly. Then he stops abruptly and stares at Rachael.
A black shadow stretches from her ear, across her cheek, down her neck. ``Mom, what is that?''
It is burned skin from radiation, a sunburn of sorts. Rachael has lost most of the hair from her temples. There is liquid streaming from her eyes and from her ears.
James touches his sister's cheek, saying nothing more. His duffel arrives at baggage claim. Hoisting it, he tucks Rachael's shoulder into his armpit. Side by side, brother and sister leave the airport, hips bumping with an awkward, graceless elegance.
In August, the treatments are over. The Hollings return to Washington, and settle in to wait. Did it work? A doctor must compare before and after X-rays. It will take some time to get the results.
Weeks pass. Annette begins to look for a job, for an apartment, for schools. They are going to stay in Washington, near the doctors they know and trust; they know they cannot impose on Ronald McDonald House forever.
Rachael's nose is still running. Her ears are still leaking. These are not good signs. So when the call comes, the news is unexpected. Since the treatments, the tumors have not grown.
It is not a resolution, but a reprieve. More tumors will appear; of that, the doctors are virtually certain. But no one knows when. Rachael has more time. But no one knows how much. In the calculus of cancer, this must pass for good news. The family celebrates with a Chinese dinner, and goes to bed.
And so James has made his choice. For the next few months, or years, he will watch his sister warily, watch for signs of choking, or stumbling, or the rasping breaths that mean there are masses once again growing in her sinuses. He will continue to hold his sister's hand, and to tease her tears away, for as many moments in as many seasons as he is allotted.
For nearly a year, James has carried in his pants pocket a small notebook, filling it with thoughts on his life, and lyrics for rap songs. He has never shown it to anyone.
These days, it is well-worn. He is getting ready to record his music - there is a volunteer at Ronald McDonald House who has connections to a studio - but James has one rap left to write; it will have a strong narrative line, he says, about life and death and brothers and sisters.
James knows he has much to learn and to experience. He knows he will get stronger and wiser and smarter. But something tells him that this rap may be the most important thing he will ever write. ILLUSTRATION: [Color Photos]
JUANA ARIAS PHOTOS
The Washington Post
James Holling, 16, and his sister, Rachael, 10 play at the Ronald
McDonald House in Washington, D.C. where Rachael was receiving
cancer treatment.
James understands the severity of his sister's condition. He speaks
frankly about the tumors, about the trials yet to be faced. All but
one.
An experimental treatment has given Rachael a reprieve. More tumors
will appear, but no one knows when. James will contiune to be there
for her.
JUANA ARIAS
The Washington Post
For the next few months, or years, James will watch his sister
warily, watch for signs of choking, or stumbling, or the rasping
breaths that mean masses are once again growing in her sinuses. by CNB