Keeping Elliot Alive

It can be painful enough when doctors tell patients they have only so long to live. But what if the patient is a little boy, and they can't tell him at all?

By Joe Kovac Jr.  / Originally published October 2004

CHAPTER 1


If he was cured, his cancer died in the hospital where they microwaved his brain.

But not so fast.

The boy might die.

Don't go crying for him, though, and end up like so many of the people who see him at home in Perry who flat lose it.

He doesn't know it is not normal for a 2-year-old to get put to sleep every weekday morning for six weeks. He thinks the machine he goes night-night on is just a big camera.

As much as it might sting, think how bad it would be if he knew cancer's reality, that he may not live to lose his baby teeth.

There will be time for crying. His mother can sense it.

Just not now.

His mother does not want folks feeling sorry for him.

She and her boy have stared down a life-robbing tumor — one the size of a bloated ping-pong ball. They saw to it that the tumor was bombarded until it shrank to little more than a lima bean. They endured the boy's diagnosis and his hair-shedding treatment, hoping they could outsmart a cancer that strikes but one in 4 million.

But it was left to the boy's mother to do what no one else could: Take her child's life in her hands with one awful decision.

Since then she has stood beneath a near-sacred gold dome in front of a world-renowned children's hospital and felt the meaning of the words painted halfway up the ceiling. The words that say "no child should die in the dawn of life."

But not so fast.

The boy might be cured.


*    *    *

 
Elliot Lacefield is almost 3.

A tumor is buried in his brain.

Doctors found it two Easters ago.

He had turned 2 a month earlier, about the time he went weak. Then he started throwing up. Stomach flu, doctors thought.

Then seizures kicked in. On Easter morning 2003 he was in their throes.

What doctors didn't know was that a tumor growing at the base of Elliot's brain was mashing on his nerve centers. The pressure was blinding. His vision faded. Doctors had to drug him unconscious.

In his Warner Robins hospital room that Easter Sunday afternoon, the telephone rang. The results of Elliot's brain scan were in.

"Hey, is this Elliot's mom?"

"Yes."

"Your son has a tumor."

Melissa Lacefield turned to a room filled with family and friends and gave the news: "He has a tumor."

But it didn't register until they got to a hospital in Macon when, instead of going in and removing the tumor surgically, doctors told Melissa they would first try chemotherapy.

"Wait a minute," she thought. "That's what people who have cancer do. Oh my God, he has cancer."

His cancer was what one doctor would later term "nasty."

It would spread.

It would make his mother pray and pray until she quit praying for what she started praying for in the first place.

She would stop praying for miracles, stop praying, "Please save him."

But she would not give up.

Her prayer would change. Like the cancer, it too would spread.

The prayer would evolve and unfurl until it wrapped itself around her and made Melissa feel as close to peace as a mother can. The prayer would comfort her and steady her and in some ways become her when eight months later she faced a desperate choice.

But on Easter Sunday 2003, a miracle was what she thought it might take.

Her son was unconscious, in a coma.

His doctors weren't sure he would ever come to.

She didn't know that in three days he would wake up smiling, singing, "Quack-quack-quack ... cock-a-doodle-doo."


*    *    *


While Elliot slept, his arms and legs curled out and locked as if frozen in mid-writhe. He appeared to have lost control of his body. The seizures unleashed by the pressure in his skull crippled him. Brain damage was a possibility.

His mother at that point had no idea that it is rare, if not unheard of, for someone Elliot's age to survive his form of cancer. But the more she learned, she discovered that there are so few cases in toddlers that gauging life expectancies is hardly an educated guess.

Pineoblastomas, as the tumors are called, get their cellular essence from a pea of a gland in the middle of the brain. The pineal gland, which medical texts often note was what the philosopher Descartes considered the seat of the soul, has little known function. Elliot's tumor formed near the gland, not far from his brain stem.

Removing such tumors will not necessarily wipe out the disease.

Pineoblastomas like to swim. Or at least their cellular offspring do, and human brains are biochemical waterslides. Crisscrossing channels bathe the organ in cerebrospinal fluid. Roughly half a quart of the liquid a day courses through the head and spine, potentially flushing microscopic shards of cancer to other locales.

So fighting the disease once it takes the plunge, especially in very young children whose brains cannot withstand the high doses of radiation necessary to stop it, is akin to plucking a raindrop from a swimming pool.

But when Elliot woke after three days in a coma, singing the quack-quack song from a Wiggles video, he seemed OK.

His mother assumed doctors would soon go in and remove the tumor.

 

*    *    *


In early May of 2003, Elliot was transferred to St. Jude Children's Research Hospital in Memphis. Melissa figured they'd be there three months.

But soon after they arrived at the hospital with the gold dome that Danny Thomas made famous, specialists took a closer look at Elliot's tumor. The growth had spread.

Melissa for the first time thought, "Oh, good Lord, he's actually probably gonna die."

September rolled around and they were still in Memphis. Elliot endured week after week of chemotherapy.

His hair fell out.

He was named St. Jude patient of the month.

He high-fived and played basketball with Justin Timberlake.

On the hospital Web site, strangers saw his picture and a smile as bright as his bald head. They sent him cards and stuffed animals.

In time, the poisons pumped into his body shrank the original tumor. But that didn't stop the thing from branching out to his spine, or another speck from cropping up in one of the waterways in his brain.

A tube for injecting medicine was run to his heart. Another rubber vein was threaded down into his brain. It came with a reservoir at the very top, which doctors used to fire drugs directly at his tumor. The bulb, implanted just under his scalp, left a cross-shaped bulge.

Elliot called it his boo-boo at first but soon forgot about it.

With all the attachments, he still bounced on his bed and scampered down hospital hallways.

By fall, Elliot was thinking every kid went through chemo, that having a tube dangling from your chest was just part of becoming a big boy.

Melissa, meanwhile, embraced a realm that didn't just understand what it means to have a child with cancer. She saw what it was like to lose a child to cancer. She bonded with other mothers. She knew exactly why when one boy was given two weeks to live that he and his family left home and moved back to St. Jude.

Not for more treatment.

They wanted him to die in a place he loved.

Melissa wondered if some day she and Elliot might do the same thing.

But doctors could not provide a prognosis for Elliot.

"We'll see" was the best they could do.


*    *    *

 
As last Christmas approached, Melissa had a decision to make.

She and Elliot would be leaving St. Jude soon. But she was not glad to be going home. She felt safe at St. Jude.

The way she saw it, "We don't stop treatment, we don't relapse. We stop treatment, we relapse."

And there was one more treatment Elliot could try. A regimen of moderate-dose radiation, enough that only might work, would still leave Elliot with learning deficiencies.

Another option — high-dose rounds of radiation — would in all likelihood kill the cancer but almost certainly render Elliot mentally retarded.

The decision to, as Melissa sometimes calls it, "microwave his brain," was one she dreaded for months.

She had by then begun praying the new prayer:  "If you're gonna take him, I accept that. Just don't make him suffer. ... Just make this OK. Make me strong enough to handle it."

While Melissa pondered radiation treatment, she recalled the decision another St. Jude mother made.

Her son was younger than Elliot. High-dose radiation was his only hope, but it would trigger devastating brain damage.

His mother chose to stop treatment. The boy died.

Melissa felt terrible when she heard.

Melissa later told the mother that it must have been a crushing decision.

No, the mother had said, not really.

"Whatever," Melissa said to herself, "she's lying to me. She's just trying to be strong and pull it off."

Then on a morning eight days before Christmas, it came Melissa's turn to give doctors her decision.

The words, she says, "just came out of my mouth."

 
CHAPTER 2

Day breaks on an x-ray-gray February morning in Memphis.

It is almost 7 a.m.

The lobby of St. Jude Children's Research Hospital is as bright as a toy store.

A pair of red wagons are parked near the doors.

The night shift pads out past a statue of children hand-in-hand. The day-crew nurses in happy fabrics and sneakers stride in beneath a mural of children playing outdoors in winter, spring, summer and fall. "Seasons of Miracles" the mural is called.

A boy named Elliot Lacefield, born on the last winter day of 2001, is on his way in, too.

He's on a shuttle bus, riding in from the apartment where he and his mother have lived for almost a year so that specialists can attack the cancer in his brain.

The treatment Elliot is heading for this Friday morning is not something his doctors have chosen. The choice to undergo what he is going through was left to his mother. She made the decision two months earlier, in December. Now Elliot is nearly done with the six weeks of mid-level radiation that will likely leave him learning disabled.

His mother could have asked doctors to shoot beams of high-dose radiation at his tumor. But Melissa Lacefield knew that while it might kill the cancer it would also obliterate Elliot's mind. She reasoned, "If I can't take him out of here the way he was when I walked in ... then there's no point in it."

But Elliot knows nothing of this.

What he does know is that when the shuttle bus parks in front of the hospital, he is closing in on breakfast and two cartons of chocolate milk.

His mother follows him inside.

"I'm ready to go home," she says, "but I'm not ready to end treatment. If this doesn't work, that's it. This is the end."


*    *    *


Pushing his stroller with handles half a head taller than him, Elliot marches the hospital's main floor, counting each step, "One, two, seven, eight, nine, 10."

He vanishes around a corner.

"It wouldn't be a day if he wasn't trying to get away from me," his mother says.

She calls after him, "It's time for the big camera," invoking his nickname for the radiation machine. "Big camera's this way."

"No, no," Elliot says, still steering the stroller, exploring. "This way, this way."

He trots past a gift shop and into a waiting room where two jumbo aquariums beckon. Elliot rushes over and, in a voice as squeaky and chipper as a talking fish's, says, "Where is he? Where is he? There's a big one. Hey, that's Nemo."

Elliot doesn't notice when his name is called over the intercom.

"OK, come on, that's us," his mom says. "Come on, we're gonna go to big camera."

Elliot throws out his arms and eeks. He wants to be picked up.

"Oh, don't do that," Melissa says. "We have to go somewhere and suddenly your legs are broken."

She scoops him up. He squeals and gives her a smooch on the cheek.

Down the hall, Elliot crawls onto an exam-room stretcher. He tells a nurse taking his temperature, "You got a boo-boo."

"I got a boo-boo? I know," the nurse says, blushing. "Do you hear him? Yes, it's a boo-boo, it's awful. Someday you'll get those."

The nurse has a zit on her chin.

Elliot barks while she checks his blood pressure and ferries him across the hall to the radiation room. Melissa hoists him onto a table that could pass for a giant copier. Elliot helps another nurse connect tubes on his IV.

An anesthesiologist standing by says, "They're all great kids here, but Elliot is one of the greater of the greats. He's just a cool kid to take care of. He's very talkative, very engaging. ... And I don't know how he feels all the time. I'm sure he's had some bad days but he never really lets us know about it."

The precise nature of radiation treatment requires that Elliot lay perfectly still. A clear tube feeds his bloodstream a creamy-looking drug that puts him to sleep. Some kids call it milk.

"Milk of anesthesia," a nurse says.

Elliot sits up and waits to conk out. He pinches Melissa's nose and says, "Oink, oink."

Five seconds later he is in slow-motion mode.

"Oh-eee. Watch this, mom, watch this," he squeaks, squeezing her nose again. "Oink-oink."

He grabs a nurse's nose, oinks once more, leans into his mother and kisses her.

His eyes, beyond drowsy, drift off.

The sleep doctor and a nurse ease him onto his back as he goes limp.

Lying down, his eyes even sleepier, Elliot tries to say mommy, but "'ommy" is all that comes out.

He falls asleep.

Melissa bends over and kisses his cheek.

"Sugar makes it go better," the doctor says.


*    *    *


The baby-blue marks penned on Elliot's scalp, by his ears and on top of his head, will be scrubbed away soon. They're reference points. Radiation technicians use them to line up the beams they zap his cancer with.

But whether their rays save him or not, his body has already endured more radiation than it can stand. If the cancer persists, there will be no more radiation.

On his last Friday of treatment, Elliot wakes up in a recovery room and requests his regular chocolate milks.

A nurse whispers that they're out of chocolate milk.

Elliot takes a Diet Sprite.

"I want the apple sauce," he says.

The nurse feeds him at first.

Then he takes a swig of Sprite and begins spooning the apple sauce himself. When he's done and his mother picks him up to leave, Elliot uncorks a baby belch.

"Real nice Sprite burp," Melissa says.

She feels at home here. She has gotten used to the 17-degree mornings of southwestern Tennessee.

She knows the hospital. She did all her Christmas shopping in the gift shop.

It is early February, five days after her 26th birthday. After lunch, Melissa drives into downtown Memphis.

Elliot likes riding the trolleys. But they're not running this day. So Elliot sits in the back seat of their maroon Cadillac and they cruise Memphis.

It is hard to know if he is listening while his mother talks, if he understands what she is saying when she tells their story.

Melissa doesn't like being called a single mother. It is not as if the boy's father is out of the picture. He lives in the town where they live, in Perry, the place Melissa grew up.

Elliot's daddy has visited them in Memphis. Melissa first met him when she was an Olan Mills photographer in Macon. Then she got pregnant. She had the boy and started raising him.

"Sometimes I'm actually glad I'm not married," Melissa says. "The parents up here go at each other's throats because that's the only people they have to let it out on. It's awful. But I understand. ... Then there are days when they're completely unified, and it's wonderful. They've never loved each other so much."

In the spring of 2003, before Memphis, before St. Jude, a doctor sat her down and gave her some advice: You think your child is yours, but you have no control.

"I was trying to freak out and control everything," Melissa says. "I was wanting to know what was happening with Elliot every minute. I was, you know, being a mom. The doctor said, 'The next year of your life is going to be a roller coaster.' And I was like, 'Yeah, whatever. He's gonna give me some crappy metaphor.' And he said, 'The biggest thing to remember about a roller coaster is you have a seat belt but you don't have a steering wheel.' At the time it pissed me off that he said it, but now I get it. I really, really get it. You realize it's completely out of your hands."

In the back seat, Elliot says nothing.

The Mississippi River is out the window. His blue eyes look there.

He is quiet while his mother says things about him, about them, about how with his life on the line she has no time for emotion.

Sure, in the days after Elliot was diagnosed, she felt the crush of why me? why my kid? why not somebody else's?

"Then," she says, "you wake up and realize it's not gonna cure him."

Melissa's own mother thinks she has gone cold. Melissa hopes she doesn't sound that way. She doesn't mean to.

"I'm gonna come off so hateful," she says, driving out of downtown Memphis, approaching the bridge that reaches across the river to Arkansas.

Elliot likes the bridge, and since the trolley isn't running he wants to ride across it — if only to the first Arkansas exit and back.

In more ways than one, Elliot has taught his mother to enjoy the ride.

Melissa does not lower her voice when she speaks of sad things he can hear, but she has never told him that anything is wrong.

Why would she? He's 2.

Sometimes it bugs her when people get emotional around him.

Oh, and it really drives her cuckoo when folks passing on the sidewalk break down for no reason other than the fact that a bald-headed boy is in their midst.

"It happens constantly. I understand, granted, on some level it's sad," Melissa says. "But Elliot is walking down the road, so apparently it's not too sad or he wouldn't be walking down the road."

Last December, she and a bald Elliot were home, shopping at the Perry Wal-Mart. A guy walked up and said, "What's wrong with his head?"

"He has cancer," Melissa said.

"Oh," the guy said.

She knows folks mean well. They just do not get it.

"Be happy in the time you've got," she says. "When they're gone, then lock yourself in a room for a month and cry and whine and moan about it. But for now, why do that? Why waste time on yourself? It is not about you. It's not about your emotions and how you feel. You're not the one who's gonna die. If anybody deserves to be down at all, it's Elliot. And he's not."

Melissa wheels back into Memphis and heads out Elvis Presley Boulevard, toward Graceland.

Elliot has fallen asleep. He was up at 6:30, an hour before his radiation treatment.

Pegged out in his car seat, his bald noggin makes him look less like a toddler and more like a little man.

"No worries," his mother says, that is the lesson of Elliot's life. "He doesn't complain. He doesn't moan. He just has this grandness for life that everybody loses. People start worrying about bills and what they're gonna be and what they're gonna do and what everybody else thinks. And here he is with terrible things happening to him and he goes through all this traumatic stuff day in, day out, but yet he still wakes up every morning completely happy to be alive."

*    *    *

A few days later, Melissa has been crying.

A teenage cancer patient at St. Jude has died.

"When bad things happen to other families, I genuinely get upset. I feel so bad for their kids, because their kids are like my kid," Melissa says. "But when it comes to Elliot, I haven't let myself break down yet."

St. Jude commercials that air on Memphis television stations have also gotten to her. Even the ones featuring children who have been cured.

"I just can't handle it. It is time for us to go," Melissa says. "I'm progressing to the next level."

Her emotions have caught up.

She and Elliot will head home to Perry not knowing if he was saved.

Then in a month, in early March, they will return for a brain scan.

Doctors will know more then.

For now, Melissa can't help being realistic.

"Tumors," she says, "come back."


CHAPTER 3

It is early March and Melissa Lacefield is doing what the parents of very sick children do best.

Amid waves of doubt, fear and the hollows between, she braces.

She waits.

With spring on the way, she signs her son Elliot up for kiddie-league baseball.

She spends the weeks after his final round of radiation living in what she calls the bliss of denial.

It is a safe haven where she can ponder the prospect of losing him without breaking down.

Terminal illness in the young, Melissa has found, affords grieving parents eternities to appraise time slipping away and how it measures up to time already spent.

It has been nearly a year since Elliot was diagnosed with brain cancer.

At home in Perry, days before returning to Memphis for his first post-radiation checkup, his mother is beyond frank about kids and life and death.

There's a little boy, Adian, up at St. Jude.

He just turned 1.

His doctors can do no more.

And there's Britani, she's 12. Doctors gave her a month.

There's Nick, 17. He just died.

"Well," Melissa asks, "which one's better?"

Is it better to have Adian, who's only a year old? He'll never walk, talk, go to school, have a girlfriend, get married, have kids.

"But," Melissa says, "you only knew him for a year. You don't have those memories to dwell on."

Then there is Britani, almost a teenager.

"Yet," Melissa says, "she's never gonna do this, this and this, and you have the memories to dwell on."

There's Nick, too, the 17-year-old. He did plenty.

"He drove a car. He got to experience most things," Melissa says. "So for that are you more thankful that at least he got to live life? Or is it worse because you have 17 years worth of knowing somebody and they're snatched away?"

Melissa isn't waiting around for answers.

"One time we were driving home from Tennessee," she says. "Going home through the mountains is longer but we went through the mountains because I wanted to make sure that he got to see the mountains. ... There's an urgency to everything. ... You appreciate every little stupid detail."

 

*    *    *


The tears don't come until June.

It's the 12-year-old, Britani.

She's dead. Rare leukemia.

And it's Elliot, his tumor. It's still there, a plug of scar tissue; not growing, not going away.

The winter rounds of radiation don't seem to have fazed it. Or have they?

A few checkups in Memphis since then haven't turned up any cancer cells.

Elliot's spinal fluid is clean.

But the tumor, Melissa can't get over the thing.

It's just ... there.

Even so, Elliot is in uncharted territory.

He has no prognosis but he does have hair.

He's a boy again at age 3.

He gains weight.

His legs, once spindles, chunk up.

He goes fishing with the new Zebco his grandpa bought.

He says "gulp, gulp, gulp" when he waters his Mimi's impatiens.

When he pats the top of his head to remind everyone, "Look, I got hair!" his Mimi asks him where he got it.

Elliot strokes his blond fluff and tells her, "Jesus."

 
*    *    *


The tears come in June because, finally, crying feels right.

Melissa has done everything else.

She sprawls across her bed and lets loose — no holding back, no "being strong."

Then she gets word that Britani has died.

Melissa ends up in the bathtub over that, slumped over her knees in hot water, bawling. For three hours.

Britani Price was a big-girl pal of Elliot's. She knew she was dying. She had joked that she was too hard-headed to die.

When Melissa goes to Illinois for Britani's funeral, half a dozen cancer-hardened St. Jude moms go with her.

They sit with Britani's mother, Jackie, on the front row at the funeral. They are the ones who Jackie says "are gonna get me through this."

But as it turns out, it is Britani who gets them through.

At the viewing, some of the mothers step outside.

One of the moms says, "Is it me, or are y'all picturing our kids in the casket?"

Melissa surely is.

She's thinking, "What would I put Elliot in? What flowers would be there? What kind of casket? What songs would get played?"

And at the funeral, the whole time, Melissa can't help wondering about Elliot's funeral.

OK, I don't like that song. ... I'd do this song. ... Oh, I like that poem.

For Melissa, the experience is the slap in the face that no crying jag can match.

She has for the longest time had some idea how bad it must be. Your own child's funeral.

But at the service for Britani, sheesh.

Melissa had had no clue.

Melissa, the warrior mother, is struck vulnerable.

Here she is in a place, a sanctuary almost, where there is no fight left.

The battle here is over.

And it's all so ... real.


*    *    *


Weeks later, Britani's mother calls before Elliot's July checkup and tells Melissa to call back in a few days and let her know "how my baby is."

Melissa, though, is hesitant.

Especially after she gets the news.

"I don't want to feel like I'm bragging," Melissa says.

Elliot's doctors can't tell if he has been cured. But one thing has become increasingly clear. Elliot is not dying. He's not even taking medicine anymore.

In July, his doctor in Memphis actually uses the word January, as in, "When you come back in January. ..."

Melissa can't believe it.

Wait, January? Did he say January? Is the doc who doesn't even let me talk about tomorrow all of a sudden telling me to count on Halloween? ... on Thanksgiving? ... on Santa Claus?

In the months since radiation, Melissa's thoughts have been laced with worry about that blasted tumor.

Hmmm, you know, it could be growing right now.

So having a doctor here in the middle of the summer already talking about the year 2005, the year her son will now very likely become a 4-year-old, is nothing short of golden.

Think how far the boy has come. From a blinding headache to a wide-open window of hope.

Think how far his mother has come. From clinging to him all these months, never leaving his side, to then, in June, riding off to comfort someone else left without a child to hold.

From crying to caring to, she later says, loving "enough to actually, I don't know, I can't explain it ... enough to let them die. I know that sounds crazy. But some people fight it so hard that it becomes more about them and not the kids. I think I could say I love him enough to completely make his life worth it, but love him enough that if the time comes to let him die."


*    *    *


On a night in mid September, Elliot feeds his great-great grandmother a handful of grape Nerds.

"Big Mama likes purple," he says.

Big Mama is on the couch.

She's 93.

She doesn't notice the candy pebbles littering her carpet.

Or the Matchbox-car grand prix snaking through her living room.

She's had a stroke. She's in and out.

But it was her, a whole year ago, who told Melissa something about Elliot that no one else ever thought to.

Something that had nothing to do with wrongs or whys.

Something only a great-great grandma can say with enough authority to matter.

"He's gonna be OK," she'd said.

But Melissa isn't counting on anything.

There's no telling what the radiation may have done in the depths of Elliot's brain.

Trouble may lie years below the surface.

And the cancer, it can always come back.

Melissa still wonders if she'll ever see the day she gets to complain about Elliot not taking out the trash.

Or if she'll ever get to fret over him playing football. She figures soccer would be OK.

Melissa admits she is kind of counting on Elliot starting preschool next fall.

But hang on.

First things first.

There's Halloween.

There's trick-or-treating.

Elliot's going as a dinosaur.


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