Survivor on a mission

Terry Ziegler knows he’s one of the lucky ones. His chronic lymphocyctic leukemia is in remission.

That has driven him to a new passion.

Ziegler initiated the process that expanded Monday’s blood drive at Grafton High School from just students to the community, and he wants to coordinate more events.

“My hope is that it’s so easy we can market it to other schools and places,” Ziegler said.

The former Grafton School Board president had contacts at the district, and he asked to expand the drive to the community.

Ziegler’s journey to reach that point, however, was harrowing.

The longtime chiropractor was watching TV with his wife a few years ago when she noticed a pea-sized bump on his neck. He said it had been there a month or two.

“That starts you down the rabbit hole,” he said.

Half a year later came tests, CAT scans and biopsies.

“That’s a bad six months,” he said.

He was diagnosed three years ago with chronic lymphocyctic leukemia.

He thought he was somewhat fortunate; this leukemia is usually non-aggressive and some people have lived with for a decade without requiring treatment.

“Yeah, it’s too bad you have cancer,” he was told by his doctors. “It’s lucky you have this one.”

Ziegler’s variation of the disease, however, was aggressive. After eight months, he became anemic and needed treatment.

He started immunotherapy that usually does the trick. It failed and wiped him out.

Then 65, he was considering retirement or at least slowing to a couple of days a week because he still loved his job. Treatment forced Ziegler to end his 35-year career in 2021.

He tried another type of immunotherapy with a high success rate. It, too, didn’t work.

But, Ziegler said, he was fortunate in that blood cancers are some of the most researched, and new treatments are being discovered.

He went through a clinical trial of cellular therapy last August.

His T cells, a type of white blood cell that attacks cancer cells, were taken out of his body and genetically modified in a lab to attack his own B cells, a type of white blood cell that creates antibodies to fight infections but that can be taken over by cancer.

“It’s like science fiction,” Ziegler said.

The treatment, however, also targeted his healthy B cells.

 Ziegler was already compromised by two treatments, and he required a monthly infusion of antibodies for about a year.

“The technology is amazing. It’s usually a combination of 40 people’s antibodies. They’re sick with whatever’s out there,” he said.

Now, his B cells are bouncing back. He doesn’t need infusions.

He had another advantage. Since he worked for Aurora Health Care, he could easily contact doctors.

“It really streamlined my care. They bent over backwards to help me,” he said.

Ziegler has no cancer in his bone marrow, but he never knows if it’s relapsing. He had avoided crowds and still sometimes wears a mask due to his compromised immune system, but said he recently attended a show in a large venue that he wouldn’t have attempted six months ago.

Ziegler and his wife live in Grafton and like to  volunteer at Riveredge Nature Center, hike and spend time outdoors.

“With the advent of the growing season, I’m just chomping at the bit to cut grass and plant flowers,” Ziegler said.

The couple also spends time with their four daughters and nine grandchildren, who all live in Wauwatosa.

His experience with cancer sparked a new mission.

“Once I started feeling better, I needed to do something with my life, something to be purposeful,” he said.

Ziegler remembered that his daughter’s friend’s daughter died from acute leukemia at 3 years old. She was involved with Midwest Athletes Against Childhood Cancer, the MACC Fund, and Ziegler wanted to help the organization.

He was amazed when he began learning about the nonprofit.

“They’ve been around so long people think it’s a big entity,” he said. “It’s just a few people who do a ton of work.”

Ziegler also connected with Versiti Blood Center, formerly the Blood Center of Wisconsin, since he was so dependent on other people’s blood during treatment.

He was also surprised to learn about that organization.

“They’re always working on about a two-day supply. If it doesn’t keep coming in, they can get into a deficit quickly,” Ziegler said. “They almost work in crisis mode all the time.”

He knew Grafton High School’s Health Occupations Students of America (HOSA) had already scheduled a blood drive for students. He wanted to increase its reach, and the school and Versiti were receptive. 

“His personal story has certainly inspired individuals to donate today,”HOSA adviser Beth Anzia said, “I know he inspired me to sign up,” 

Ziegler got the Future Business Leaders of America Club to help advertise the drive, which increased the number of students involved with the effort, she said.

Ziegler also wants to use the event topromote the MACC Fund.

MACC development director Michael Bielawski said, “Terry has a big heart for helping kids fighting cancer and related blood disorders. Organizing the blood drive is one of the many ways he’s offered his time and talents to support the MACC Fund.

  “Donating blood is a tremendous way to support kids fighting cancer and related blood disorders as blood transfusions amidst treatments are so common.”

Ziegler hopes to expand the event to area schools. They’re a natural fit since they have HOSA clubs looking for real-world projects and have the facilities for hosting.

“There’s no reason this can’t expand to a lot of different places. All the infrastructure is in place to make this happen,” he said.

While Ziegler said he hasn’t done much to get the first event off the ground, he has bigger aspirations.

“I hope to do a lot,” he said.