Mother and daughter fight for the education of those who cannot navigate a complicated healthcare system

BEACHWOOD, Ohio – As CEO of The Gathering Place, Michele Seyranian is a passionate advocate for those coping with a cancer diagnosis.

Passion is often influenced by personal experiences. In Seyranian's case it was her daughter Alique.

At age 4, Alique was diagnosed with acute myeloid leukemia, a rare form of leukemia in children.

“As a parent, I was devastated,” Seyranian said, her face troubled as she relived that time.

“However, a friend suggested I contact The Gathering Place. It was 1998 and the place had just opened. They hadn't even officially opened all of their doors yet.

“So I came and told them about my daughter, and because it was so rare, I tried to figure out where the best place would be for her to get treatment.”

The Gathering Place was able to find a specialist in Seattle who has participated in studies on Alique's form of cancer.

The doctor was able to consult with doctors at Rainbow Babies and Children's Hospital in Cleveland.

Alique soon began the most aggressive chemotherapy a person can receive.

Seyranian was on site almost around the clock during the treatment. When chemotherapy ended, her hospital stay lasted six months.

During this ordeal, Seyranian worked for Key Bank in marketing and strategic planning.

Years after her daughter was in remission, she remembered asking God for help.

“I know you shouldn’t do business with God,” she said. “But I asked God to save my child and promised that I would do good.

“I am ready to end my career (so that I can do good things with my life). I've always been in the for-profit world.

“I knew that I had received back the most incredible gift, the most precious thing – my child.

“My first stop on this trip was Hospice of the Western Reserve. I later joined The Gathering Place.

“It has allowed me to help someone who is walking the same path I once did.”

The family had hoped to find a suitable bone marrow for Alique, which could have led to a transplant. The Seyranians are of Armenian descent and after working with the National Marrow Donor Program, they discovered that there weren't as many Armenians registered at the time.

Undaunted, Seyranian led a nationwide effort to visit Armenian churches and register people for donations.

They saw more and more people saying they also needed bone marrow but couldn't find it.

On a recent visit to The Gathering Place, the atmosphere was zen. The one-story building is hidden in an industrial park.

Although the focus is on supporting cancer patients, further support is also offered to families who may be caring for the patient.

Other amenities include classes on preparing meals that best meet the patient's nutritional needs.

In a salon near the entrance to the facility, there are walls made of wigs of various colors.

In addition, there are daily counseling and fitness exercises, and an outdoor area decorated with fountains, trees and shrubs provides privacy and creates a sense of calm.

Alique Topalian, 31, married and living in Cincinnati, earned her doctorate in health promotion education from the University of Cincinnati several years ago.

She remembers a few things about receiving cancer treatment at age 4. But it wasn't until three years ago, when she was re-diagnosed with acute myeloid leukemia, that memories of her past came flooding back.

“When I got sick again and was in the same hospital, the same things happened,” she said.

“I remembered a lot more than I initially thought. I think some might say that trauma is stored in the body. It was literally from the day I found out I was diagnosed when they brought me in for the bone marrow biopsy.

“I immediately had a panic attack and it was just so real. I began to remember experiencing it as a child.

“I just realize, wow, this is the same as before.”

When Topalian's cancer came back, she had to fight for the diagnosis. Her medical team described her symptoms as everything from migraines and burnout to gynecological problems.

“When they finally discovered it, I had 19 platelets in my body,” she said. “That day I requested a CBC and a differential diagnostic procedure and the nurse replied, 'I don't think you need one.'

“My mother made me have a CBC and (differential) done whenever there was something wrong with me. And now I've been sick for a long time. No one listens and a nurse tells me “no”.

“I demanded that you put a note in my file that I asked for this test, but you won't give it to me.

“She went ahead and ordered it. When the results came back, it was indeed cancer.”

This experience brought Topalian, like her mother, into the healthcare field.

She considered the core concepts of her career in research. She has always been looking for the right approach that healthcare professionals can take to increase and strengthen the quality of life in communities around the world.

“A patient who is educated about things they don’t know is a confident patient,” she said.

“And that doesn’t mean you have to do hours of training or anything like that. It means knowing you can ask questions or make suggestions.

“You can’t just treat us and leave us there. It’s like pulling a fish out of the water and letting it lie there gasping for air, right?”

Services at Gathering Place are free.

The meeting point is at 23300 Commerce Park Road in Beachwood. For more information, visit touchedbycancer.org/