Kailua cancer survivor ready for next big step

By Rod Ohira
Advertiser Staff Writer

Arielle Underwood was 12 inches long and weighed 1 1/2 pounds at birth. Four months later, doctors amputated her cancerous right foot.

Arielle Underwood, 11, gets help packing from her mother, AnnMarie Manzulli, and sister Eva, 2. Arielle will be at Mokule'ia's Camp 'Anuenue, for young cancer survivors, this week. Deborah Booker • The Honolulu Advertiser

"It made me feel uncomfortable and it got to be annoying," the 'Aikahi Elementary School student said. "Now, I just say, when I was a baby, I had cancer. Cancer is a disease, it sort of eats your body from inside. If we left the disease alone, it would have killed me.

"I tell them that's why they had to cut off my foot. If they didn't, I wouldn't be here."

The support of her parents, AnnMarie and Sabino Manzulli; father, Steve Underwood, and 'Aikahi faculty, especially counselor Naomi Ravelo, has given Arielle the confidence and self-esteem to take a giant step forward today.

She is attending Camp 'Anuenue in Mokule'ia this week, alone and away from her support group for the first time. "I know it's going to be fun but I am a little scared," Arielle said of the annual weeklong free camp for children with cancer sponsored by the American Cancer Society.

Camp Project Director Debra Glowik calls it a lifetime experience.

"The children are with peers who share the same experience," said Glowik, who has had seven surgeries to reconstruct the 50 percent of her nose that was lost to skin cancer. "They can understand each other. It's amazing how caring they are and how they accept each other.

"They become friends forever. The survival rate for children with cancer is high so we're seeing a lot more survivors coming back to camp instead of children coming once and us never seeing them again."

Until now, AnnMarie Manzulli has never been too far away from the eldest of her two daughters, who was diagnosed with fibroma sarcoma cancer shortly after birth.

"She was so small," Manzulli said. "Curled up from head to butt, I could hold her in the palm of my hand. The doctors noticed a little lump under her right foot. They watched it for four months and it kept growing.

"Fibroma sarcoma is the kind of cancer that sprouts," she said. "If it sprouted to her lungs, she would die. They couldn't treat it with chemotherapy or radiation because Arielle was so small. She weighed only 4 pounds when they did the surgery (to remove her foot)."

Manzulli and her former husband agonized over what to do before agreeing to the surgery. "At the time, I kept fast forwarding to when Arielle was older and thinking what if she blames me," Manzulli said. "But it came down to amputate the foot or letting her die."

Missing a foot did not handicap the child and it was never an issue until she entered kindergarten at 'Aikahi Elementary.

"She had attended a private preschool and kids at that age don't care if you're green or blue," Manzulli said. "In kindergarten, the kids would line their slippers up before going into the classroom. Arielle was wearing her prosthesis and it stood out when she took it off and put it with the other slippers.

"That's when she became self-conscious about it," Manzulli said. "She asked me, 'Why am I different?' She went from being an open, cheerful girl to withdrawn, feeling like all eyes were on her foot."

Manzulli, a graphic artist who has her own marketing and advertising business, contacted Ravelo for help.

With Ravelo's encouragement, Manzulli made a photo album so her daughter could show and tell her story to classmates.

"When everybody knew the story, it was no longer a big deal," Manzulli said.

The photo album has since been replaced by a small book titled "Arielle's Footprints" that tells the story.

Manzulli did the writing and illustrations with the help of Caroline Wright.

Ravelo, meanwhile, has watched Arielle's development with interest.

"I've always thought of her as a trooper," Ravelo said. "I think the photo album was good for all the kids. It promoted tolerance and acceptance to celebrate our differences.

"Arielle has overcome tremendous obstacles. Last year, I went to see her in an after-school ballet class and watched her perform without the prosthesis. She's an inspiring role model who participates in everything."

Arielle has nicknamed the stump below her right ankle, "the ball." Looking at it reminds her of things that are important.

"I survived the cancer and I'm glad they didn't chop me up to the hip," Arielle said. "I'm glad I can walk on it without the prosthesis if I want to. There are others who have to go to the bathroom in a wheelchair.

"You know what, it's really OK when you look at it," she said. "And when people get to know you, they really forget about it."

Reach Rod Ohira at 535-8181 or rohira@honoluluadvertiser.com.