The family Battle
Stephanie Battle finds herself inexplicably in the middle of an anguishing fate. Cancer stalks her children, her sister. And her.
By LISA GREENE
Published June 11, 2006
[Times photos: Melissa Lyttle]
|Could it be a gene mutation? A toxic environment? Or something with a truly strange name: Li-Fraumeni Syndrome? Craesha Gordon, 8, of Clearwater waits to see the doctor at H. Lee Moffitt Cancer Center. Like her sister, her mother and her aunt before her, she fights cancer.
||Stephanie Battle addresses her own health concerns in her doctor’s office. This time there’s no tumor, she is told.
||Craesha Gordon, at All Children’s Hospital, has been suffering from severe headaches. Cartoons entertain, and mom is by her side, even as she checks on her son by phone.
||Tests, including a CT scan, are done and it’s time for Stephanie Battle to take her daughter Craesha home to Clearwater.
||Because of her own health concerns, it’s hard to keep a job, but Battle has completed a job training program and hopes to find work in the medical field.
For the moment, Craesha Gordon's mysterious headaches had vanished, and she felt like a child again.
The 8-year-old sat up in her bed at All Children's Hospital in St. Petersburg, watching The Proud Family in pink pajamas and nibbling M&M's.
Her mother, Stephanie Battle, wasn't so carefree. She leaned her head back against a chair, using all her energy to smile so Craesha wouldn't see how drained she was.
"I'm just a wreck,'' Battle said, too softly for Craesha to hear. "It just makes you wonder if life is worth living.''
Battle had hoped they were done with All Children's. Doctors had removed the tumor from Craesha's leg five months earlier; the surgery was supposed to take care of everything.
Instead, here they were again, while puzzled doctors ordered more tests and Battle prayed that the family curse hadn't returned.
* * *
Most cancers seem random, their targets selected by some unlucky roll of the cosmic dice.
Of course, it doesn't happen exactly like that. At some level, scientists believe, most cancers can be linked to a concrete cause: smoking, sunburns, an unhealthy diet. Yet many of the exact triggers that morph cells into cancer - the reasons one smoker dies young while another lives to 95 - remain a mystery.
Sometimes, the roots of cancer start before we are born. Some slight miscue encodes itself into our genes, giving tumors more freedom to grow and spread. These cases are a slender minority, perhaps 5 to 10 percent of all cancers.
But even for people with a genetic pre-disposition toward cancer, genes aren't destiny. A higher risk doesn't make cancer automatic. Some families with a genetic glitch may never be touched by the illness.
At the other end are the families that cancer strikes again and again.
"Families like that have been around forever,'' said Dr. Rebecca Sutphen, director of clinical genetics at the H. Lee Moffitt Cancer Center & Research Institute in Tampa. "But the technology didn't allow us to see it in the past.''
Over the last 10 or 15 years, as scientists have worked to unlock the secret of the human genome, they have learned far more about how such genetic flaws contribute to cancer.
The best-known such genes are the BRCA-1 and BRCA-2, which occur in about 1 in 500 to 800 families. They are linked to 5 to 10 percent of cases of breast cancer. Women who have one of those genes are at much greater risk for the disease.
Scientists have yet to identify many genetic changes that increase the risk of cancer.
"Technology is capable of getting answers,'' Sutphen said. "But only some of the time.''
For Battle and her loved ones, the question would become whether scientists have learned enough.
Enough to explain: Four cancers. One family.
* * *
One day six years ago, Battle's older daughter, 11-year-old Shaterica Davis, got a terrible headache. Battle took her to the doctor, who gave the child pain medication and sent her home. Shaterica passed out in the car on the way there. Battle drove straight to the All Children's emergency room.
Scans showed that Shaterica had a brain tumor. Fluid was filling her skull, pressing on her brain, threatening her vision. It might kill her, doctors said as they worked to drain the fluid.
Shaterica lost the sight in her left eye and was hospitalized for months. Surgery followed surgery. Battle's son Terry was 8 then, Craesha just a baby.
At first, Battle tried to shelter Shaterica from the truth about what might happen to her. When doctors came to talk, she would go into the hallway to discuss the scary scans, the grim prognosis.
But eventually, she decided Shaterica was old enough to know. It was her life. She told the child everything and asked her: Are you scared?
"No, Mommy,'' Shaterica said. "I know the Lord.''
During Shaterica's illness, Battle's sister, Michelle O'Neal, then 31, was struggling with breast cancer. Surgeries and treatments for aunt and niece were so frequent that once, Shaterica was at All Children's while O'Neal was hospitalized next door at Bayfront Medical Center. Battle shuttled back and forth, trying to care for both.
For a few years, both Shaterica and her aunt improved. Their cancers went into remission. Shaterica started school at Clearwater High. O'Neal went back to work as a certified nursing assistant.
But by 2004, Shaterica's cancer had returned. There was nothing left to do, doctors told Battle.
The news for O'Neal was bad as well. Cancer had spread to her liver and lungs. She and Shaterica both came home to spend their final days, and once again, Battle found herself running between two patients - her daughter in her little Clearwater apartment, her sister two doors down.
Shaterica died July 12, 2004.
"You know, it won't be long now,'' her sister told Battle.
She followed Shaterica nine days later.
* * *
Battle had begun to worry about her own health even before Shaterica's death. She hadn't told anybody but her sister. She had been experiencing some of the same symptoms, pain and bleeding from her breast, that O'Neal had suffered. Still, Battle hadn't gone to a doctor. It had all been just too much.
Not until almost a year after her sister and daughter died did Battle gather the courage to get herself checked. The answer was swift: She, like her sister, had breast cancer. Her surgeon, Dr. Tony Murphy, started her medical chart like this:
"33-year-old lady with absolutely horrendous history.''
* * *
Battle cried when she heard. The cancer had been there for about a year. She chose the most aggressive treatment, the removal of her left breast rather than just a lumpectomy.
She had barely recovered from the surgery when Craesha began to complain of pain in her leg - pain so bad that she didn't want to go outside and play.
Before long, Craesha was at All Children's, asking if she had a tumor like her sister. If she was going to die too.
Doctors struggled to diagnose what was wrong. Scans showed an abnormal growth, but what was it?
Dr. Doug Letson, division chief of the sarcoma program at the Moffitt Cancer Center, thought it might be a benign growth. But it might also be a low-grade osteosarcoma - a type of tumor so rare that only about 10 cases are seen in the United States each year. Letson had seen only three in his career.
He faced a stark choice. Operating to remove the growth would mean taking out half of Craesha's thigh bone and replacing it with cadaver bone. She would be on crutches for months and might end up with a limp. The surgery was too big a risk for a growth that wouldn't hurt her. But if the tumor was malignant, without surgery it eventually would kill her.
Letson needed to know more. He sent slides of the tumor to six top pathologists around the country and asked for their opinions.
The verdict: Three benign, three malignant.
Letson scanned Craesha's leg again and saw no improvement. That suggested a malignancy to him. By now, it was the end of October 2005. He met with Battle and Andrew James, Battle's longtime boyfriend.
Letson wanted to operate.
* * *
Battle wondered what was going on in her family. Her mother had never had cancer. Neither had her father. Where was this coming from?
The family's doctors wanted to know the same thing.
"You're knocked back on your heels, and you think, 'This is almost beyond belief,' '' Murphy said. Like the other family physicians quoted in this story, he spoke to a reporter with Battle's permission.
"I think there's a genetic predisposition,'' said Dr. Jerry Barbosa, medical director of All Children's Pediatric Hematology & Oncology Program and one of Craesha's doctors. "There must be. Can I prove that? No, I can't. But it's very unusual. I've been practicing oncology for 30 years and rarely do I see this.''
Family doctors referred Battle to Moffitt's genetics program, with the hope that testing could provide more answers. Identifying a genetic problem couldn't cure a cancer, but it still could help the family. It might alert doctors that family members would need to get certain screening tests more often. And it might at least explain all the illnesses.
Sometimes, a genetic mutation has been handed down for generations, but it's hard to trace because of incomplete family histories, said Thuy Vu, a genetic counselor at the University of Texas M.D. Anderson Cancer Center.
"The other thing to consider is that it has to start somewhere in the family,'' she said. "Sometimes, maybe both parents had normal working copies of a gene, but at conception, a genetic accident occurred.''
At Moffitt, scientists decided to test the family for a particularly rare disorder, known as Li-Fraumeni syndrome. The syndrome is so unusual that fewer than 400 families have been diagnosed with it around the world.
In this case, doctors thought, Li-Fraumeni would make sense. The syndrome is linked to a higher risk for several types of cancer. Among them: breast cancer and brain tumors, the illnesses that had affected the Battle family.
Li-Fraumeni is caused by a mutation in a gene known as TP53, a critical tumor suppressor gene. The gene tells how to make a protein that helps make damaged cells die, instead of rapidly dividing to form tumors.
The gene "has been called the gatekeeper of the human genome,'' Sutphen said. "It's so important in so many tissues in the body.''
Battle had mixed feelings about the test. Part of her wanted to know - to have some certainty, some reason, something concrete.
But she was also fighting powerful feelings of guilt. Battle understood that a genetic mutation wasn't her fault, but she couldn't help feeling responsible for what was happening to Craesha.
"I felt like I was killing my kid,'' she said. "Just like when Shaterica passed, it just feels like there was something I could have done. Even though I know there wasn't.''
So Battle was tested for Li-Fraumeni with a mix of anticipation and dread.
She didn't know what to think when the results came back negative.
Counselors told her she could get more testing done, to see if she had the BRCA-1 or BRCA-2 genes. But that would mean filling out forms to get fees waived for the expensive out-of-state test. And again working up the nerve.
* * *
Several weeks later, Craesha swung across the parking lot outside Letson's office, moving fast enough on her crutches that her mother had to hurry to keep up. Craesha was hoping that Letson would tell her she no longer needed them.
Battle's boyfriend tried to reassure her as she got her blood pressure checked.
"They're just going to look at your films and tell you that you're healing and connecting, just the way you're supposed to be,'' James told her.
Then Letson came in with Craesha's X-rays. It looks like we got all the tumor out, he told the family. He had made the right decision: Pathology reports showed the tumor had been malignant. But now it was gone, and her leg was healing where the new bone had been added.
"Let's see that leg, kiddo,'' he asked Craesha, and poked and prodded.
"The muscles are working really good,'' he told Battle.
But he didn't say what Craesha wanted to hear. She wasn't ready to walk on her own yet. "You've got to stay on crutches until it heals.''
Craesha nodded so hard her hair beads rattled.
After James took Craesha outside, the doctor told Battle one more thing: Craesha's leg wasn't healing as fast as it should. She might need more surgery on the new leg bone.
* * *
Soon that concern was consumed by another. Three months later, in April, Craesha started complaining of terrible headaches, just as her sister had done. Battle, terrified Craesha had a brain tumor like Shaterica, took her to All Children's, where doctors performed scans.
Now mother and daughter waited in the hospital room for results, Craesha eating M&M's and Battle almost overcome with worry. She had recently undergone a hysterectomy for reasons unrelated to cancer and was running on little sleep and less hope.
"It just seems like one thing after another,'' she said. "Every time we come over one bridge, there's something. It's so, so overwhelming.''
Craesha became restless in her bed. She and Battle moved to the hospital playroom, where Craesha picked out I'm a Believer on the jukebox and played Cootie and Sorry with her visitors.
Battle sat down at the table and slid her chair close to her daughter.
"Are you ready to go home?'' she asked in her ear.
"Yes,'' Craesha told her. "I want to go back to school.''
The results of the scans still weren't back by the time American Idol came on in Craesha's room that night. But the next day, the doctors came to talk to Battle. The scans were negative. They could find no signs of a tumor.
It was the answer she wanted. And yet it wasn't an answer at all.
Lisa Greene can be reached at (813) 226-3322 or email@example.com.
ON THE WEB
For more information about genetics and cancer, please click on www.cancer.gov/cancertopics and click on "Cancer Genetics"; or go to www.plwc.organd click on "Learning About Cancer," then "Genetics."
HOW TO HELP
Friends have set up a fund for the family: The Stephanie Battle & Craesha Gordon Cancer Fund, Bank of America, 1610 S Missouri Ave., Clearwater, FL 33756.
[Last modified June 9, 2006, 11:13:44]
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