Families that find themselves suddenly facing a battle with leukemia are the first ones to tell you: There are no words; there is no preparation for the long road ahead. Despite the shock, amid the quick progression of intensive treatments, however, the work begins.

A father’s perspective

“You’re not thinking — you’re just moving forward,” says actor and musician Charles Esten, who now serves as the National Honorary Chair for The Leukemia & Lymphoma Society (LLS) National Light The Night campaign. When his daughter Addie was diagnosed with acute lymphoblastic leukemia, Esten remembers his doctor’s immediate, hopeful response: “Here’s what we’re going to do.”

Addie was less than three years old and, at the time, the survival rate for children was 85 percent (the survival rate today is about 90%). Esten felt that rate was much higher than expected, but he couldn’t neglect that remaining percentage. “When it comes down to your child,” he offers, “that's the biggest and most frightening 15% you've ever heard of.”

Staying involved

To brace for Addie’s upcoming procedures, Charles and his and wife Patty became “as informed as we could on the road in front of Addie,” he says. “There’s a temptation to leave it all to the experts. Although [they] clearly are the ones doing the procedures, we played an active role in her treatment.”

For Mom and Dad that meant coloring Addie’s day-to-day with hope — having the right toys, books and entertainment to support and ease her through the treatment. “I remember bringing in the tricycle and letting her ride in the hospital halls,” Charles recalls.

'“When you’re handling so many things, you rarely get a chance to just stop and be with each other. It’s important to create those moments.”'

But the other side was “more academic,” as he puts it, “looking at the road ahead and seeing that she was getting a blood test Monday and two more on Wednesday, and then trying to coordinate to have one test and share results — a million details like that.”

Parent’s role in care

While each doctor is an expert in his or her own field, Esten explains that it may often be the loved ones that have the full vision of what the patient is going through and adjustments they might need.

For many families in similar battles, a huge concern is balancing each day with their other children, family and work. Esten says having two more young children at home kept him and Patty from collapsing. Throughout soccer practices and homework sessions, one parent would be at the hospital, the other at home with kids. “When you’re handling so many things, you rarely get a chance to just stop and be with each other,” says Esten. “It’s important to create those moments.”

Life after leukemia

Now age 17, Addie is fully recovered. “She has only vague recollections,” Esten offers, “but it’s always been part of who she is.”

A FULL RECOVERY: Since making a full recovery, Addie has been dedicated to speaking out and becoming an advocate for others afflicted with LLS.

"She has grown up around LLS and is fully aware of the important work they do. An All-State varsity soccer player, Addie is currently being recruited to play Division 1 soccer in college." She finds great rewards participating with LLS advocacy, stating, “the most rewarding experience is getting to meet so many other survivors and hearing their stories and supporting others who are going through their battles."

“It’s a great way to meet people who have been through something similar,” Esten adds. “The community includes survivors, families who have lost a loved one to blood cancer, and those who are right in the middle of it, battling and in treatment everyday. There are so many things that have blessed my family when it comes to being part of LLS. There are heroic people on both sides of the stethoscope.”