Arianna Rose Dougan, age 4½, likes to dress up in fancy clothes and work on art projects that involve glitter and jewels. She always wears pink, her favorite color, except when she adds a touch of purple, her second-favorite color, to set off the pink.

“She’s a fancy little girl,” says Lori Zucker, Ari’s mom. But make no mistake. Ari is one tough little girl, fancy or not. In June 2009, Ari was diagnosed with Stage IV neuroblastoma, a rare cancer that originates in nerve tissue or the nerve cells. It is the third most common cancer to occur in children.

Some of Ari’s family members and friends will take part Saturday in Pedal the Cause on her behalf. “People riding for Ari may all wear tiaras, because Ari likes tiaras,” says Lauren Cooper, an intern with Pedal the Cause, the first bike challenge to raise funds for Siteman Cancer Center and St. Louis Children’s Hospital. “We’re encouraging each team to do something for each child that ties in to one of the child’s interests.” (To ride for Ari, see box on page 19)

The cancerous mass in Ari’s body first presented as bruises on her legs. Today, after surgery, numerous rounds of experimental chemotherapy and two bone marrow transplants, the tumor is gone and doctors tell the family that only “minimum residual disease” remains in Ari’s body. “At first, we thought that was bad, but the doctors say that is great,” says Zucker. All told, the little girl has spent more days of her life in the hospital than at home.

“Ari has taken a lot of this in stride,” says Zucker. “Ari has a strong character, as though she were an old soul. Something about her is very grown up, including her extensive vocabulary – though like any child, she likes to play, and is not afraid to get dirty. She is a wonderful, normal little girl in spite of having been through so much.”

Ari, who attends kindergarten for three half-day sessions a week at Shining Rivers School in Webster Groves, lives in Olivette with her parents, Lori Zucker and Shawn Dougan. Zucker, 40, is a stay-at-home mom; Dougan, 46, works for Hyman Ltd. Classic Cars. They also have two sons, Liam, 8, and Adan, 6. The boys attend Conway Elementary School.

Right now, Ari is doing well. “As far as we know, she’s doing great,” says Zucker. “We’ll have all the tests all over again at the end of October, and that’s when Ari will finish with the clinical trial she is part of. We’ll and hope and pray that after the tests, everything comes back clean.”

Zucker adds that Ari likely will be enrolled in another clinical trial and definitely will continue to be monitored by an oncologist. “We have to watch for side effects that are coming from the treatments she’s had already. Radiation has affected one kidney and she has some hearing loss from chemotherapy. This is the price you have to pay for her surviving, and we’re happy to pay that price.”

Since Ari’s diagnosis, much has changed. “Going through this with Ari has changed the family dynamic, changed our priorities in life. It certainly has changed how I look at all my children, and makes me think every day about the things I appreciate,” says Zucker.

“In the past, Shawn and I knew that bad things happen to people, but you never think about it happening to you or your kids, happening in your own world. You worry about scrapes and bumps and colds. Now, with all Ari has been through, we look at those little things as unimportant.”

What is important to families who have children with cancer is emotional support. Zucker’s parents, Marilyn and Les Zucker of Olivette, have stepped in to help care for Liam and Adan. “We all do everything we can to keep the rhythm and pattern of our lives routine for the boys, even while going through all this with Ari,” says Zucker.

Another source of support is Dr. Sam Amin, a clinical fellow in the pediatric hematology oncology clinic at St. Louis Children’s Hospital. Ari was Amin’s first patient in the clinic, and he has treated her since the first day of her diagnosis. “Ari is an amazing patient, and I have learned a great deal from her care, from the medical standpoint but also the social standpoint,” says Amin, a native of Ghana. “I now have great appreciation for the resilience of children in general, and a great love for Ari and her family.”

The family also receives emotional and spiritual support from some members of Congregation Shaare Emeth. Ronnie Brockman, program director and co-founder of Camp Rainbow, which serves children with cancer and blood-related disorders, is one of those individuals.

“I wear two hats in Lori’s life,” says Brockman. “I met her when she was interested in joining Shaare Emeth and then again when Ari was in the hospital, because we take Camp Rainbow to the hospitals. Lori and I have become friends. It’s amazing what her life has been like since this all started, but Lori and Ari both have been so welcoming. And Ari – Ari is always smiling.”

Liam and Adan attend religious school at Shaare Emeth, and the family has found another champion in Liessa Alperin, director of the school. “I try to be helpful and supportive with the boys, and I try to arrange things – find meals or other resources – that would be helpful for the family,” says Alperin. “Still, I don’t do anything above and beyond what anyone else does. What Lori does is above and beyond – this is an incredible family.”

The family is widely known for its compassion, especially for Lori’s requests for prayers for other children being treated for cancer. Also, Zucker is happy to promote Pedal the Cause. “Considering our experience, any project that can provide help for kids with cancer, make the future more possible for them – well, we’re doing it,” she says. “Pedal the Cause is so important, because only through research can everyone benefit!”

Pedal the Cause

WHAT: A bike challenge for individuals and teams to raise money for cancer research at Siteman Cancer Center and St. Louis Children’s Hospital

WHEN: 8 a.m. Saturday Oct. 9

WHERE: Downtown St. Louis

FEE: $75 for the 25-mile course or $100 for the 60-mile course. Pledges are to be collected from family and friends.

CONTACT: See www.pedalthecause.org or call 314-787-1990

ADDITIONAL INFO: Participants riding to honor a specific child are invited to a Kickoff Celebration at 7 p.m. Friday to meet with children and their parents.