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Monday, February 09, 2009

8-year-old Allyson McClellan: 'Why did God let me get cancer twice?'

She's had cancer twice, but Botetourt girl still smiles.

Dr. Joan Fisher jokes with Allyson McClellan on the day of Allyson's final treatment at Carilion Roanoke Memorial Hospital.

Photos by Stephanie Klein-Davis | The Roanoke Times

Dr. Joan Fisher jokes with Allyson McClellan on the day of Allyson's final treatment at Carilion Roanoke Memorial Hospital.

Allyson, 8, sings along to pop artists Aly & AJ's

Allyson, 8, sings along to pop artists Aly & AJ's "Potential Breakup Song" on the Nintendo Wii.

Jennifer Stuart, a second-grade teacher at Cloverdale Elementary School, sits with Bridget Peeters, 7 (left) and Allyson McClellan, 8, as they write and sing songs during recess.

Jennifer Stuart, a second-grade teacher at Cloverdale Elementary School, sits with Bridget Peeters, 7 (left) and Allyson McClellan, 8, as they write and sing songs during recess.

Michelle McClellan arrives at Cloverdale Elementary School to pick up her daughter Allyson after school.

Michelle McClellan arrives at Cloverdale Elementary School to pick up her daughter Allyson after school.

Michelle McClellan videotapes Allyson's appointment at Carilion Roanoke Memorial Hospital as Melissa Clark, Allyson's nurse, 
does some work with her. Allyson's father, Chris McClellan, and siblings Nathan, 12 and Emily, 10 came for the appointment the day before her 76th — and final — chemotherapy treatment.

Michelle McClellan videotapes Allyson's appointment at Carilion Roanoke Memorial Hospital as Melissa Clark, Allyson's nurse, does some work with her. Allyson's father, Chris McClellan, and siblings Nathan, 12 and Emily, 10 came for the appointment the day before her 76th — and final — chemotherapy treatment.

Between her heaves, Allyson McClellan's parents hovered in the doorway of the hospital room.

"Emily has basketball tonight. I guess I will take Nathan to church," said her father, Chris, quietly.

"Don't forget I need to weigh in," said Allyson's mother, Michelle. She is taking part in the Botetourt Athletic Club's eight-week weight-loss challenge.

The McClellans of Botetourt County -- Chris, Michelle, Allyson, her brother Nathan and her sister Emily -- carry on, even though they continue to deal with a particularly tough life blow: a child with cancer. And Allyson, now 8, has had to deal with two different forms of the disease over six years.

Stories about children with cancer permeate, mainly because it's one part of life that is just darn hard to understand. But, overall, childhood cancer is still relatively rare, with about 12,000 new cases diagnosed in the United States annually.

Allyson's situation is far rarer than that. The tumors she has dealt with both are rare.

When Allyson was a toddler, doctors found a Wilms tumor, which is a solid mass, on one of her kidneys. The tumor and the kidney were removed, and Allyson completed more than 20 weeks of chemotherapy treatments before she turned 2.

Allyson had been diagnosed officially as cancer-free for about six months before cancer appeared again last spring. Initially doctors thought a cyst was the cause of slight swelling in her right eyelid. When Allyson's mother read about rhabdomyosarcoma on the Internet and raised it as a possible diagnosis, one doctor told her she was reading too much online. Unfortunately, Michelle McClellan -- who works part time for Ronald McDonald House Charities of Southwest Virginia, an organization that supports the families of sick children -- was correct. McClellan said the doctor later called to apologize.

Allyson, a second-grade student at Cloverdale Elementary School, finished chemotherapy treatments last month for the second cancer.

Between 7 percent and 8 percent of childhood cancers are soft tissue sarcomas, such as rhabdomyosarcoma. Wilms tumors are the fourth most-common type of cancer in children, affecting one in 8,000 to 10,000 children in the U.S. each year, according to St. Jude Children's Research Hospital. Cancers more commonly found in children include leukemia, brain tumors and neuroblastoma.

The cause of Wilms tumors is unclear. As for Allyson's second tumor, her oncologist, Joan Fisher, ruled out radiation from treatment of the first round of the disease as the cause because the treatment was limited to her abdomen. Fisher also said an unknown genetic risk has not been ruled out.

Allyson "has had two very rare tumors and now exposure to chemotherapy agents that further predisposes her to more cancer," Fisher said.

Dealing with what's dealt

Chemotherapy treatments and hospital visits have become a part of the McClellans' schedule. Chris McClellan, 40, is an assistant principal at Roanoke's Patrick Henry High School. Michelle McClellan, 39, was able to take a leave of absence from the Ronald McDonald House, a job she found out about through a social worker the family met during Allyson's first bout with cancer. The McClellans strive to provide consistency for their children.

"The McClellans are truly brave and strong as a family. They have been tested and found to be full of faith and love. You will not find a stronger, more courageous family," Fisher said.

Each time Allyson goes to the hospital, she gets a bead for the procedures or tests she underwent.

"What did I get the star for, Mom?" Allyson asked, pointing to a dark blue bead in the middle of a necklace.

Allyson McClellan's recovery from cancer brings new "normal"

Video by Stephanie Klein-Davis | The Roanoke Times

Allyson and Michelle McClellan have been to the hospital so many times neither can recall if that bead was for blood work, a scan, a chemotherapy treatment or something else. Allyson is working on her second necklace. The first one is already full.

"They are colorful and nice, but I'd be happy if we didn't have them," Chris McClellan said.

"People ask, 'Is it any easier the second time?' The first time you go blindly through it. It is not any easier. No," Michelle McClellan said.

And it is no less difficult for Allyson.

Michelle McClellan said Allyson asked, "Why did God let me get cancer twice?"

Midway through Allyson's last chemotherapy treatment, the staff of the hospital's pediatric oncology and hematology department paraded into Allyson's room with a chocolate-iced cake, baked by one of the nurses. They serenaded her with a song borrowed from St. Jude's, set to the tune of the Oscar Mayer Wiener song:

"Our patients have the cutest S-M-I-L-E,

Our patients have the cutest H-E-A-R-T,

We love to see you everyday, but now it's time we get to say,

Pack your bags, get out the door, you don't need chemo anymore!"

Then they showered her with Silly String. The room cleared out, but the fun continued as Allyson tried to spray Emily, 10, who sat at the edge of the room, playing on a Nintendo DS and trying to tune out the experience. Nathan, 12, begged Allyson for a chance with the spray can, and when he snagged it, she squealed. Relentless, he sprayed her.

"It's in your hair," he said.

"I don't have hair!" she shouted back, and everyone in the room laughed with her.

Silly String and chocolate cake are good distractions, but near the end of the treatment, as usual, Allyson began to vomit. Emily left the room, taking the video game into the hall with her. Her parents said Allyson will be sick for about 48 hours after the treatment.

Allyson's treatment included 76 doses spread over 40 weeks. She also underwent 25 radiation treatments in five weeks.

The subject of the update Michelle McClellan posted on Care Pages the night of the last treatment read: "SHE DID IT & WE PARTIED UNTIL SHE PUKED! LITERALLY!"

Familiar place, familiar faces

Fisher has been Allyson's doctor for both bouts of cancer and Allyson has had the same nurse, Melissa Clark. Being under Clark's watch was Allyson's sole request.

Michelle McClellan said when she asked Allyson what she liked about Clark, Allyson said, "She's funny, she smiles all the time, and she wears lipstick."

Glamour is important to the 8-year-old -- she even drew a lipstick mouth on the plastic foam mannequin that holds her wig.

Allyson had to go to the University of Virginia to have the "rhabdo"-- as McClellan calls it -- biopsied last spring. During the procedure, the surgeon was able to remove all but 0.4 millimeters of the tumor, even though the plan was only to biopsy it. Allyson wasn't prepared for what she saw when she removed the patch from her eye after the surgery. The incision, stitches and bruising jarred her.

"She looked at me in the car and said, 'Mommy, how come the more better I get, the worser I look?' " McClellan recounted.

To treat the remnants of the tumor and to prevent the cells from spreading, Allyson began an intense treatment regimen with Fisher and Clark at Carilion Roanoke Memorial Hospital.

Allyson has grown very comfortable at the hospital. She helps Clark by weighing herself on the scale and she shakes the tubes that hold her blood samples before they are sent to the lab. When she grows tired of waiting for Fisher, Allyson leaves the exam room to look for her. She wanders into the nurses' station and sits down with Clark at her computer.

The last treatment was harder than usual on Allyson, leaving her sick for about four days. On top of the side effects from the treatment, Allyson and the rest of the family all were coughing from a virus.

Allyson's prognosis is good, although she faces a heightened risk of recurrence. If the cancer comes back, it is most likely to happen within the first year and to affect the same site -- the right orbit -- or the lungs. The odds of recurrence usually decrease after the first year.

"I am worried for her, as are her parents. The best we all can do is face each day with optimism and live life to the fullest," Fisher said.

Allyson will undergo end-of-treatment scans and tests later this month and then every three months after that.

She is ready for her life to return to normal -- no more treatments, tests or sickening side effects. She wants to take trips to Disney World and Massanutten, a ski resort near Harrisonburg.

"When I go to Disney, I am going to ride all the bigger roller coasters 'cause I grew over the summer and my mommy is going to ride them with me because I might be scared," Allyson said.

The McClellans also plan to travel to Los Angeles this spring to meet Miranda Cosgrove, teenage star of the Nickelodeon television show "iCarly." The Make-A-Wish Foundation is making the trip possible.

Allyson wants to be an actress when she grows up. She is full of charm, cheer and challenge. She could fill any role.

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