In the Face of Pain From the pages and pictures of 'fighting Chance' spring to life stories of children's courage and the cost of surviving cancer.

THE BALTIMORE SUN

SEVENTY-FIVE percent of children diagnosed with cancer survive. In an age of medical miracles, when we hear almost daily of new ways to fight cancer, prevent it and beat it -- that may not sound surprising.

But the statistic continues to delight Dr. Curt I. Civin, director of the Pediatric Oncology Division at the Johns Hopkins University School of Medicine.

"Step by step, we've moved from almost no cures, to approximately one in four when I was a medical student, to now three out of four -- and I'm not that old," says Civin, 49. In "the next decade or two," he expects 90 percent of children diagnosed with cancer will beat the disease.

Still, this is not an easy fight. Killing cancer in the growing body of a child means taking chances with vital organs like the heart, the kidneys and the brain. Treatment is a trade-off, a calculated risk that has doctors doing the best they can and hoping the effects will be minimized down the road.

From the very moment they sit parents down to confirm that their child has cancer, physicians know treatment will take two to three years -- if successful. Their patients' lives change in an instant. There is no time to brace them for what is to come, no way to show them or their families that hope may lie past the hours of chemotherapy, the months of hospital visits, the endless tests and shots and possible surgeries and radiation.

Until now, Civin says.

Baltimore photographer Harry Connolly spent three years on 8 East, the Pediatric Oncology Division at Johns Hopkins Hospital, taking more than 15,000 photographs of children and families engaged in fighting cancer.

The result is "Fighting Chance: Journeys Through Childhood Cancer" (Woodholme House, $27.95) a photographic essay.

The book is the first of its kind for families who find themselves confronting childhood cancer. Hospitals around the country have already begun placing copies in their pediatric oncology wards. Volumes have also been placed in each Ronald McDonald house, the homes away from home for families of ill children.

Seventeen of the 54 children Connolly photographed did not survive. But Keith Patrick, Heather Brogdon and Eli Kahn did. Here is where they are today.

Keith Patrick

Twenty-year-old Keith Patrick is sprawled in the spotless living room of his parents' farmhouse outside Easton on a lazy Saturday afternoon, eating leftover casserole and trading wisecracks with his older brother, Scott.

With his earring, mustache and goatee, Keith has a rogue's look about him, and he plays the part. Irreverent but charming, one minute he's the serious youth who endured 10 different types of chemotherapy to treat the T cell lymphoma discovered in his body in 1993. The next, he's the smart-mouthed 16-year-old he never got a chance to be because of it.

"A lot of people have died from cancer and I kicked its ass -- in record time," Keith boasts. His mother, Dawn, appears chagrined at this, but can't help smiling.

"My grandmother told me half of fighting cancer is your emotional state, and you should say and do what you want," Keith says. Her battle with breast cancer was the only experience the family had had with the disease before Keith was diagnosed.

"The first thing you think of is death," Dawn Patrick says. "For two years you cry. For two years, you don't sleep because there's always that possibility."

Keith's treatment ended in January 1997. Subsequent checkups have shown no return of the cancer.

But the fight is not over. After his chemotherapy ended, Keith was at loose ends. There were problems with drinking and drugs, fights over his disregard for rules, a bout with depression that scared his parents more than the cancer, Dawn says.

"Cancer controls the body for so long -- mentally and physically -- that once the cancer quit controlling him, he didn't know how to control himself," she says.

Keith's lifelong dream of attending the U.S. Naval Academy is gone. His cancer therapy affected his short-term memory so much that he takes just one night class at nearby Chesapeake College. During the day, he works at a well-drilling company with his brother.

It's hard to tell who Keith might have been without the cancer, Dawn admits. The disease struck him when he was bright and strong and just starting to find out who he wanted to be.

Keith is philosophical. "Before the cancer, I was lost and had no place," he muses. "This gives me a place. Maybe not the right place or the best place. But I was a cancer patient. Now I'm an ex-cancer patient and that's what I'll always be."

Dawn and her husband Bob worry sometimes that Keith will define the rest of his life by the disease he's beaten, simply

because he was old enough to understand the pain he endured -- the vomiting and fevers of 105 degrees, the hair loss and severe mouth sores.

"My husband says that because of the cancer Keith has become very spoiled," Dawn says.

But even Bob can't stay angry at Keith for long. The first summer Keith was ill, he was too weak to help the family with regular farm chores. Instead, he sat on the front porch, tired and weak and overwhelmed by guilt.

Last summer, when the family was putting its hay away, Keith and Scott competed to see who could toss the 60-pound bales the highest. Bob had to warn his sons to stop before somebody got hurt.

"But he didn't want to yell at them," Dawn says, "because it was just the greatest sound to hear those boys giggle."

Heather Brogdon

"I'm leaving now to slay the foe,

Fight the battles high and low,

I'm leaving, Mother, hear me go,

Please wish me luck today."

Phyllis Vines cries as the words written by her youngest daughter echo through the Barclay School auditorium on a sunny June afternoon. Heather Brogdon, 13, was too shy to recite them herself at this "closing" ceremony for the eighth grade class of 1998.

So another girl is reciting Heather's poem. As Heather and her classmates teeter on the edge of young adulthood, it is Heather's words that have become their unified cry for freedom.

"I've grown my wings, I want to fly,

Seize my victories where they lie

I'm going Mom, but please don't cry

Just let me find my way."

By now, other mothers are sniffling, too. But Phyllis Vines knows best the true plea behind each line.

In March 1994, when Heather was 9 years old, she was diagnosed with acute lymphocytic leukemia, a disease she and her family had never heard of. Heather endured 2 1/2 years of chemotherapy, complicated by severe infections.

"At one point, everything they were giving her just wasn't working," Phyllis recalls. "She was just fading away and it seemed like there wasn't any hope."

But Heather lived. And all the moments Phyllis thought would never come are here. The good ones, like graduation. And the tough ones, like boys calling and Heather wanting to go out, and Heather wanting to join her friends outside the relative safety of their Charles Village neighborhood. Her skirts are getting a little shorter, her music a little louder, and Phyllis isn't ready to let her baby go.

"It's like she wants to live it all now because she's afraid there won't be enough time," Phyllis says.

"I want to see and touch and feel and hear,

Though there are dangers, there are fears,

I'll smile my smiles and dry my tears,

Please let me speak my say."

In an ivory, floor-length dress decorated with blue roses that her older sister, Dee Dee Gilliam, chose for her, Heather looks far older than nearly 14. Her face is so serious and solemn, her sisters and her mother bring their hands to their own mouths, signaling her to smile. Heather finally breaks into a giggle when her 7 1/2 -month-old nephew, Caleb, lets out a robust holler.

Heather has been cancer-free for a year and four months now. The best part about it, she says, is not having to go to the hospital -- though she does visit a clinic for bimonthly check-ups.

Equally important is the return of her hair. Heather went bald three times during her treatment. To carry her through, she found a wig, which she nicknamed "Charlene." Before her graduation, though, Heather sat for eight hours as a beautician wove her hair and a handful of decorative beads into shoulder-length braids.

Heather dreams of being a model or a fashion consultant. This afternoon in the auditorium, her sister, Angel, is already talking about when Heather goes to college. A whiz in math, Heather also enjoys science and language arts, and has been accepted at both Baltimore City College and Lake Clifton Delaware Academy of Finance.

As Heather walks across the stage to accept her certificate, Phyllis wipes more tears away. "I never thought this day would come," she whispers.

She says she knows that surviving cancer means Heather is destined for bigger and brighter things. And she's determined she will get there.

"She's been through too much and fought too hard to lose herself and her life now to the streets," Phyllis says.

"I'm off to find my world, my dreams,

Carve my niche, sew my seams,

Remember as I sail my streams,

I'll love you all the way."

Eli Kahn

On a recent evening in Pikesville, 7-year-old Eli Kahn stands impatiently on third base, itching for someone on the Wellwood Mets Little League team to get the hit that will bring him home.

Hat pulled firmly on his head, Eli inches his way off base. Finally a hit sails into the outfield. As he heads toward the plate, Eli decides against his usual headfirst slide. Instead, he saunters down the base line and does a little two-step across home, softly chanting "9 to 5, 9 to 5" all the way over onto the grassy sideline and his mother, Marlene Trestman.

"We're winning, Mom," Eli says with a grin. "I see that, Eli," Marlene answers, smiling.

In Harry Connolly's "Fighting Chance," there is a photograph of Eli at a party that Hopkins staffers throw for each child after his or her last chemotherapy session. Wearing an "I Did It!" T-shirt, his lips rimmed with cake crumbs, Eli looks jubilant amid the intravenous tubes and other hospital equipment. His mouth is open and his arms are raised in triumph, his left hand firmly grasping his baseball glove.

The photograph is one of the most endearing images in the book. Except for the setting, it is also one of the most "normal." But because of the setting, the photo of Eli celebrating his freedom from the disease he'd battled since age 3 is one of the most vivid pictures of hope in the book.

Finding hope, keeping it and giving it to others have been crucial to Eli's parents, Marlene and her husband, Henry Kahn, during their only son's fight with acute lymphocytic leukemia.

"The stories I always liked to hear were the ones where people said, 'Oh, so-and-so had cancer and now he's 15 and playing soccer, or 18 and graduating from high school.' " Marlene says. "The stories always seemed so anecdotal -- like it was all in the past and they'd moved on."

In the living room of their comfortable stone house in Pikesville, while she and Henry reminisce about their son's three years of treatment, Eli and his sister, Helene, 9, dart in and out. The kids dissolve into muffled giggles each time their parents admonish them to calm down.

Eli remembers little of what he endured during the cancer, and for Marlene and Henry, that has been the "biggest blessing."

The couple say they were careful not to let themselves dwell on the experience, neither the pain Eli had to endure nor the possibility, buried far back in their minds, that he might die.

"The doctors tell you at the outset how wonderful your odds are and they give you a schedule of what the treatments are going to be for 2 1/2 years," Henry says. "You hear the message enough that you're able to believe it."

Since the publication of "Fighting Chance," Eli has become a sort of minor celebrity, talking about the book and his experience on TV and radio. His parents, who agreed to Connolly's project not knowing what lay ahead for Eli, believe its message must be told.

"Seven out of 10 kids are living," Marlene says, her tone underlining each word.

"I find myself sort of tugging on people to make sure they know about the book," she says. She and Henry have sent numerous copies to friends and acquaintances. Some are facing their own battles with cancer; others are people they believe might benefit from what they see as a truly hope-filled story.

"I would have loved to have this kind of book when Eli was diagnosed," Marlene says. "It shows that other than those days when you're being treated, life goes on with very little alteration."

Support groups

American Cancer Society: Baltimore. 410-931-6868

Arm-in-Arm: Timonium. 410-494-0083

Candlelighters Childhood Cancer Foundation: Bethesda. 800-366-2223. (Age 21 and under.)

Greater Baltimore Alliance for Cancer Survivorship: Baltimore. 410-336-8362 day, 410-889-8047 evenings.

Johns Hopkins Oncology Cancer Counseling Center: Baltimore. 410-955-1010.

Leukemia Society of America: Baltimore. 410-825-2500.

Susan G. Komen Breast Cancer Foundation: Baltimore. 410-433-7223.

National Coalition for Cancer Survivorship: Silver Spring. 301-650-8868.

Sisters Surviving: Baltimore. 410-566-5000.

0 Wellness Community: Baltimore. 410-832-2719.

Celebration

Tomorrow is National Cancer Survivor's Day, a day of celebration for the more than 8 million Americans who are cancer survivors.

The Greater Baltimore Alliance for Cancer Survivorship is having free music and other entertainment, exhibits, cancer resources, information on a coming march on Washington from 1 p.m. to 4 p.m. at Fifth Regiment Armory, 29 Division St.

Information: 410-955-1287 or 410-328-2578.

About cancer

* Cancer is the second leading cause of death in the United States.

* One of every four deaths in the United States is from cancer.

* The National Cancer Institute estimates that 8 million Americans alive today have a history of cancer. Some of these individuals can be considered cured, while others still have evidence of cancer.

* Approximately 1.2 million new cancer cases are expected to be diagnosed this year.

* Four of 10 patients who get cancer this year are expected to be alive five years after diagnosis.

* This year about 564,800 Americans are expected to die of cancer -- more than 1,500 people a day.

* Scientific evidence suggests that up to one-third of the cancer deaths expected this year are related to nutrition.

LTC Source: American Cancer Society

Pub Date: 6/06/98

Copyright © 2020, The Baltimore Sun, a Baltimore Sun Media Group publication | Place an Ad
55°