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October 10, 2007

Amesbury 4-year-old, clear of cancer, to visit Disney World

Dan Guttenplan

AMESBURY — Joe Delisle stood in the backyard of his Amesbury home last week pushing his 4-year-old daughter, Alana, on a swing set as he spoke of her bout with cancer.

She was diagnosed with Ewing’s sarcoma in June 2006 and immediately began chemotherapy treatments that would continue every three weeks for a year.

The cancer developed in her tibia, the large bone in the lower leg, causing an otherwise active child to crawl rather than walk in the days leading up to the diagnosis. The initial news devastated Joe and his college-sweetheart wife, Melissa Delisle, before, Melissa said, “our survival instincts set in.”

“You’re a parent,” Melissa said. “You don’t have a choice. You deal with it because you do whatever you can to make sure your kid lives.”

The 12 months of chemotherapy included many bad days — ones that left Alana depleted on a bed at Massachusetts General Hospital. Eventually Alana’s tibia had to be removed and replaced with a bond from a cadaver.

“Stop talking about my leg!” Alana screamed once her father got to the word, “cadaver.”

Less than two months since Alana was given a diagnosis that was 100 percent clear of cancer for the first time in a year, she has no patience for a recounting of the bad times.

Good times figure to be in the immediate future.

Joe, Melissa, Alana and youngest sibling, Ella, 2, will depart for Disney World on Oct. 25 thanks to a $7,500 donation from the UMass Lowell athletic department through Make-A-Wish.

It was a fitting gesture, since both Joe and Melissa graduated from UMass Lowell in 1998, Joe as a linebacker on the football team, Melissa as a two-sport athlete in soccer and softball. Melissa’s college roommate, Shannon Hlebichuck, who is now the varsity field hockey coach at the school, spearheaded the effort to send the Delisles to Disney World.

“A year of Alana’s life has been taken away,” Hlebichuck said. “I have a child the same age. We wanted to make up for what she missed out on.”

‘Knowing she’s not in the clear’

Whether it was a mother’s intuition or a downside of her occupation, Melissa was the first to mention cancer in June of 2006. As a nurse who specializes in treating cancer patients at MGH, she had seen the symptoms and pained looks that Alana showed the summer before last.

After Melissa initially took her daughter to a local pediatrician and he diagnosed the ailment as a possible bone fracture, she sought a second opinion. When an MRI had doctors believing Alana’s ailment was a bone infection, Melissa asked for a biopsy. Finally a cancer test came back positive, and Melissa’s worst fears were validated.

“Alana obviously benefitted from me being an oncology nurse,” Melissa said. “But after going through this experience, I wish I wasn’t one. Knowing she’s not in the clear is not fun personally. I struggle with that. I always wonder, ‘Should I get a different kind of job?’”

But the struggle is never evident to Melissa’s friends or family.

“For the sake of Alana, she keeps everything on the inside,” Hlebichuck said. “She needed to be strong on the outside for her daughter. That’s what she did.”

So the Delisles treated every therapy treatment like a trip to Disney World. Alana would march into Mass General dressed like a princess, only with an evident limp and a bald head.

The positive energy worked in cycles. Joe and Melissa fueled Alana and she returned the favor.

“I remember her being so sick and tired in the hospital — worn down from the treatments,” Melissa said. “But she’d pack all different dresses and get into character. It helped all of us. It gave us a light at the end of the tunnel.”

‘Her age is a blessing’

After the surgery to replace her tibia, Alana was fitted with a leg cast that ran from hip to ankle. Months later, her leg strengthened so doctors fitted her with a removable lower leg cast to wear at home and a smaller shin guard to wear to school.

As Alana ran through her backyard in the removable cast last week, she would bounce on her right foot for two steps and swing the braced left leg around every third step. She didn’t appear to be overly cautious as a result of the surgery; instead, she raced up and down a grassy hill and laughed whenever she fell.

“That’s how we knew she was sick,” Joe said. “She stopped wanting to play soccer and kick the ball. She stopped wanting to run around. She wanted to be carried everywhere, even on our trampoline. That wasn’t like her.”

Alana’s first stop in Disney World will be the Bippity Boppity Boutique. There, she will be fitted for dresses and prepared like a princess.

“I can dress up like any princess I want,” Alana said. “They’ll do my hair, but it won’t take long for me,” referring to her hair that’s just starting to grow in again.

Upon her return, she will have her first routine checkup since the cancer-free diagnosis. It will be part of a two-year plan in which she receives a chest CAT scan every three months. After two years, the checkups will occur twice a year.

But Alana would prefer to talk about Disney World or the prospect of attending kindergarten next fall. Cancer talk is off-limits.

“I like not being in the hospital,” Alana said. “I didn’t like that. But I like being a princess.”

“Her understanding of the severity of this whole thing — I don’t think she gets it,” Melissa said. “She knows she was sick. She knows about the doctors taking her blood and the chemo. But I don’t think she understands how sick or how lucky she was. Her age is a blessing.”

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