Childhood cancer: ‘It’s like fishing with dynamite’

Genevieve Lux, right, with her mother, Lia.

Childhood cancer: ‘It’s like fishing with dynamite’

Weekend lemonade stands, concert to benefit OJ 6th grader.

By Rob Alway, Editor-in-Chief.

LUDINGTON — The annual Childhood Cancer Fund lemonade stands will be out in full force on Saturday, June 2. The stands raise money to assist local children who are fighting cancer.

This year’s fundraising recipient is Genevieve Lux, a 12-year-old sixth grader at O.J. DeJonge Middle School. On May 30, 2017, Genevieve, the daughter of Tim and Lia Lux, was diagnosed with t-cell acute lymphoblastic leukemia.

Selecting Genevieve as a recipient has been very fitting, said organizer Tom Ezdebski, because Genevieve has been hosting a lemonade stand since she was in third grade.

One year ago, Genevieve was a healthy 11-year-old. “She ran up to three miles a day, loved playing volleyball and was looking forward to running cross country in the fall,” her mother, Lia said. In May, Genevieve’s lymph nodes had swollen. One of Genevieve’s pediatricians, Dr. Kari Leikert, told Lia that she may want to consider bringing her to Helen DeVos Children’s Hospital in Grand Rapids.

“We had been back and forth to the emergency room and the pediatrician’s office,” Lia said. “Nothing else seemed abnormal, except the lymph nodes but Dr. Leikert said, just before the Memorial Day weekend, that if my mom gut was telling me something wasn’t right then we needed to get her to Grand Rapids.”

Over the weekend, Genevieve was active, like most 11-year-olds. “I remember her having fun with her cousin that weekend, and she came home and said that her head really hurt. She had gone through a bottle of Tylenol. I’m not one to look up symptoms online and I remember people saying ‘Don’t look for zebras when it could only be a horse.’ But, it was a zebra. When we got down to the emergency room in Grand Rapids, they brought in a hematologist and I knew what we were facing.”

Being acute, Genevieve’s cancer was moving rapidly. While there is a 95% chance of survival, the process changes lives. “It’s like fishing with a stick of dynamite,” Lia said. “It just blows your world up. You have all this stuff slammed at you. They start telling you what they are going to do. it’s overwhelming, but at the same time, the medical staff at Helen DeVos made it easier. And, back home, we had friends who took action.”

Lia is an administrative assistant at O.J. DeJonge Middle School. “I am fortunate that I work at the school because of the insurance. Plus, Michigan has a program called Children’s Special Health which covers everything that my insurance doesn’t cover. But, this group of people at this entire school district has just been phenomenal. Once they found out what we were going through  — and I wasn’t here the last two weeks of school last year — there was such an outpouring of love and support and care. It was just beyond amazing. It wasn’t just about a student or someone who worked at the school, it was about one of their own, their family.”

Lia said fundraisers were held and people started providing her family with gas cards and meal cards.

Then, Tom and Patricia Ezdebski of the Childhood Cancer Campaign stepped in. “I just can’t say enough about these two and how important they have been in this process. Whenever there is a need, I get a phone call from Tom or Pat. When Genevieve has had to go to the children’s hospital, she has to be there for two weeks. Normally, I will stay one week and my husband will stay the other. Tom and Pat have made sure that our needs are met.”

Genevieve has also received a lot of support from her family, including her brother Seneca, 25, and his wife, Lauren, along with their children; and her brother Russell, 17.

One of Genevieve’s concerns last summer, as she was going through her initial treatments, was hosting her lemonade stands. She said she normally has three stands during the summer, starting with the first Saturday of June.

“She doesn’t think about herself too often, so as she was going through treatment she wasn’t too happy to find out that she wouldn’t be able to have a lemonade stand,” Lia said. “But, her cross country team hosted a stand and raised the money to buy Lia a scooter, which was a surprise to her.”

Genevieve hasn’t let her illness slow her down. During her stays in the hospital she made sure to keep up on her school work and maintained straight A’s, Lia said, adding that her teachers offer to spend one-on-one time with her through the iPad.

During the summer of last year, a short time after her diagnoses, she attended Camp Catch a Rainbow near Jackson. At first, her parents were a little hesitant, but then they found out that one of Lia’s doctors would be at the camp. Later, they found out that one of her cabin mates was a cancer survivor from this area. “The camp was a great experience for her and for months it was all she talked about,” Lia said. “She’s looking forward to going back. The camp is like a mini hospital and is able to treat most of the children right there.”

Genevieve said she has made new friends at the hospital and at the camp. The staff at Helen DeVos Children’s Hospital has also made life easier. The hematology/oncology ward is located on the ninth floor of the hospital. On the 11th floor is an activity center for the patients.

Genevieve said that she and her friends/fellow patients have been known to have some Nerf gun battles on both floors.

“As sad as it can seem on the ninth floor, there are moments when it’s just kids being kids,” Lia said. “The doctors and nurses just take it in stride with kids running around and playing.

“You become family at the hospital, they are a family you hope you never have to have, but they are your family.”

“I always say, it’s the best place you never want to visit,” Tom Ezdebski said.

Today, the anniversary of Genevieve’s diagnosis, was just another school day for the middle schooler. She took time out of her first hour to meet but was eager to get back to class.

“I like all my classes. I have a bunch of fun teachers,” she said, adding that reading is probably her favorite thing to do; she reads a lot while in the hospital. “I’m bored of Nancy Drew,” she said.

This is the 12th year of the Childhood Cancer Fund lemonade stands, a project of the Ludington Optimist Club. The stands are scattered throughout the county and lemonade is purchased by donations. This year, stands can be found at:

Friday, June 1:

• Residence at corner of Tinkham and St. Paul streets

Saturday, June 2:

• Ludington Waterfront Park
• House of Flavors Restaurant, 402 W. Ludington Ave., Ludington
• Sandcastles Children’s Museum, 129 E. Ludington Ave., Ludington
• A.J.’s Party Port, 423 S. James St., Ludington
• Lenz Balder Insurance, 201 E. Court St., Ludington
• Preferred Credit Union, 266 N. Jebavy Dr., Pere Marquette Township
• Hungry Howies Pizza, 5485 W. US 10, Pere Marquette Township
• Orchard Market, 212 S. Pere Marquette Highway, Pere Marquette Township
• Orchard Market, 8418 N. US 31, Free Soil Township
• Residence at 59 N. Gordon Road, Amber Township
• Residence at 405 N. Main St., Scottville

(This list may change and will be updated on our site and Facebook).

In addition to the stands, there will be a benefit concert on June 2, Music Saves Lives, at Waterfront Park, beginning at 2 p.m. The free concert will feature the Ludington High School Jazz Band, Chad Rushing, Joey Mankus, Emma & Mallory, Third Coast Gypsy Jazz, Redux, Bob & Aurora, and John Merchant.

The concert will benefit both Genevieve and Hunter Bowman, another local childhood cancer patient.

Those wishing to donate may send money to Childhood Cancer Campaign, Optimist Club of Ludington, PO Box 903, Ludington, MI 49431.

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