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Leukemia & Lymphoma Society: Let Your Light Shine - Ladue News: Special Features

Leukemia & Lymphoma Society: Let Your Light Shine

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Posted: Thursday, September 5, 2013 12:00 pm | Updated: 12:06 pm, Mon Sep 9, 2013.

On the day of the Leukemia & Lymphoma Society’s (LLS) Light the Night walk last year, the Giunta family was having a particularly difficult time. Luke, who had recently turned 10, was less than two months into treatment for lymphoma. It was a treatment day at the hospital, so he was feeling sick from the chemotherapy and didn’t feel up to the walk. “We had people coming in from all over the Midwest, so I told him, Just go and say hello, and I’ll take you home whenever you want to go,” says mom Becky Giunta. “But adrenaline is a marvelous thing! They had a break at the first mile, where everyone was thinking that might be enough—but he was saying, Let’s keep going! What it did that day was amazing—the transformation was pretty cool.”

Since then, the family has grown its relationship with LLS, attending a conference on blood cancers about new research and also receiving financial assistance, Giunta says. This year, Luke is starting at a new middle school, so the nonprofit will lead a class at his school to help his classmates understand the disease, she adds.

Giunta also credits LLS for its advocacy in supporting parity for oral chemotherapy drugs. Oral chemotherapy was the recommendation made by Luke’s doctors as a primary part of his treatment plan, because it specifically targets cancer cells, has fewer side-effects and allows him to be treated from home, greatly decreasing the number of days he spends in the hospital.

“The family and patient just want their lives to go back to ‘normal’ after a cancer diagnosis and targeted oral therapies make that happen,” says Debbie Kersting, executive director of the Gateway Chapter of LLS.

Twenty-six states and the District of Columbia have already enacted laws to ensure access to oral anticancer therapies, but that is not the case in Missouri. “We had a hard time getting the insurance company to cover it at the beginning,” Giunta says. “If we would have given up at any point, we wouldn’t have had access to that drug. It’s one of the most stressful situations there is in the life of a parent, and then put that on top of it—it doesn’t have to happen that way.”

Fortunately, the treatments are working: Luke had a clear scan in June, meaning that he’s cancer-free. Now, Giunta says, he will be on maintenance chemotherapy for a year. But now that he is coming out of ‘survival mode,’ Luke is happy to help raise awareness for the disease as an Honored Hero at this year’s Light the Night walk, which will take place starting at 7:30 p.m. on Sept. 27 in the Upper Muny Parking Lot in Forest Park.

Richard Mark, president and CEO of Ameren Illinois, is serving as chair of this year’s event. He says he became involved after a conversation with Ameren Corporation CEO Tom Voss, who chaired last year’s event. “I was telling him the story of an employee of Ameren Illinois whose 6-year-old son had just been diagnosed with leukemia,” Mark says. “We felt that it was important to participate in this event because leukemia and lymphoma affect so many people in our community.”

The event, which raised some $850,000 for research and direct aid to families last year, has a goal of $1 million with this year’s event, Mark notes. “It’s important when someone comes down with a disease like this to have support organizations that provide information and people they can turn to,” he says. The walk itself is unique in the region as one of the only fundraising walks to occur at nighttime, he adds. Each participant will receive a lantern—red for supporters, white for cancer survivors and gold for those walking in memory of someone who has passed away—which they can keep as a token of the memorable night, he says.

Those lights were one of the most compelling parts of last year’s event for Giunta, as well. As she was focused on trying to keep track of her four kids, she remembers her husband looking ahead and pointing them out to her. “There was this whole river of people in support, with the balloons snaking through Forest Park and up by Children’s Hospital, where Luke is treated,” she says. “It was a huge emotional boost, to see that many people fighting the same battle. It was eye-opening.”

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