Brain cancer requires a fight and changes the entire family | St. Louis Public Radio

Brain cancer requires a fight and changes the entire family

Jun 12, 2008

This article first appeared in the St. Louis Beacon: June 12, 2008 - Suzy Esstman's initial encounter with her brain tumor disease was less swift and dramatic than Sen. Kennedy's. In the summer and fall of 2003, she began to forget words.

Suzy's friends initially wrote it off to stress. After all, she and her husband, Don, of Chesterfield, were caught up in planning their son Andrew's bar mitzvah. And all the while Suzy was keeping up her dizzying volunteer schedule serving on projects, events and steering committees.

But after the bar mitzvah, Suzy's troubles continued.

Finally, a friend suggested she see her doctor. Blood tests revealed nothing but the doctor suggested an MRI.

The news was devastating. It was a brain tumor.

Ten days later biopsy results brought more bad news: the tumor, an astrocytoma, was inoperable.

"Unfortunately, what families get when they are told this news is not a lot," Don said. "Your treatment options you have to figure out on your own. The doctors here are fine. They are good doctors. But in terms of having all the knowledge that you need – you have to do your own research.

"We were all over the Internet. We sent her films to almost every brain center in the country that does research trying to get the best diagnosis and information on the approach we should be taking."

They learned Suzy's options were limited.

"Unfortunately, her tumor was so large and so diffuse they couldn't operate," Don said. "That was the conclusion from doctors all over the country. The first line of defense on these tumors is to get it out. Your only other choices are chemo and radiation, and those are hard on the body."

Suzy eventually elected to take radiation and chemotherapy with questionable results.

"The doctors weren't clear about whether it was helpful or not," Don said. "It seemed to slow things down but unfortunately as one doctor told us, 'The natural progression of these tumors is they ultimately overtake you.'"

Suzy's trouble with words continued. She had a hard time reading. "That was very frustrating for her," Don said. "Here's a very active woman who once gave public speeches but who now couldn't remember words. It's hard on the family to watch – and it's hard on the person. She knew the changes that were going on."

Suzy lost her peripheral vision and had to quit driving. Steroids she took for the swelling in her brain changed her physical appearance. "She went from a size 2 to a size 10 in a matter of months," Don said. "Her face was swollen, and her stomach was swollen. That was very upsetting for her because she was a beautiful woman."

Suzy died July 8, 2007, at age 44.

She had remained positive and optimistic to the end. "She would not ever talk about her own death," Don said. "She always believed that she would beat it, and she kept fighting to the end. She kept thinking a cure was going to come."

Friends rally against the disease

Suzy Esstman's friends and family turned out several hundred strong at an annual walk in Queeny Park earlier this month to help raise funds for research on the disease that killed her. She died just weeks after last year's event.

Esstman, who was diagnosed with the disease in 2004, and her friends launched Walking On Sunshine to help raise awareness of the disease and funds for neuro-oncology research being done at Hadassah Hospital in Israel.

A tireless volunteer, Esstman worked with various community organizations but serendipity led her to Hadassah.

In 2006, as Esstman was struggling with the disease, the St. Louis chapter of the organization invited a neuro-oncologist from Hadassah Hospital to speak to the group. Someone suggested inviting Esstman to speak as well, as she was known for her positive attitude through her diagnosis and treatment.

"It was so interesting how she just chose to incorporate it (her disease and treatment) into her life and to continue to do all of the things she had done before," said Joan Denison, executive director of the St. Louis Hadassah chapter.

"I remember she was going through chemo -- it was probably a year and a half after the diagnosis and initially the diagnosis was for not much time, maybe two years." Hurricane Katrina had just destroyed New Orleans, and Esstman was working at a food pantry to help storm victims.

"Here this woman has three children and a life of her own and an inoperable brain tumor, and what's she doing? She's out there helping other people. She was really an inspiration. But this wasn't anything new. This was the way she always lived her life," Denison said.

After her talk, Esstman said she wanted to do something for the group.

"Being the kind of person she was, she was like, 'You know, I should be doing something for them (Hadassah). They were so nice thinking of asking me to speak'," Denison said.

A friend suggested that, since Esstman liked to walk, they organize a walk to benefit research at Hadassah Hospital.

"In March (2006) with less than two months to do it, they put together this walk," said Don Esstman, Suzy Esstman's husband.

Some 300 people pre-registered for the event that year but 350 more turned out on race day. The event, held the first Sunday in June, drew just as many people last year. Suzy Esstman attended though she was too sick to walk. She died on July 8, 2007.

In the first two years the walk raised $65,000 for Hadassah Hospital.

Next year Dallas and San Francisco will hold Walking on Sunshine events to benefit Hadassah Hospital, with other cities planning future events, Hadassah president Diane Maier announced.

The Esstmans (from back left): Don, Andrew, Joe and Laurel.