Patients flock to cause, advance brain tumor research

It’s an odd creature to cherish, but Terrah and Mark Siwik will be quick to tell you they love grey flamingos.

They love them so much, they have been sneaking into the yards of neighbors to bring flocks of them. A note on one of the bird’s necks lets residents know that, for a reasonable donation, they can get the birds to fly to another yard.

It’s all part of
the May 2016 fundraising campaign that the Siwiks did to help raise money for the MUSC Brain Tumor Research Fund, as well as awareness about the need to advance research for brain cancer.

Terrah said they saw the idea done in a neighboring subdivision for breast cancer awareness. They adopted the idea, painting about two-dozen flamingoes grey, and between that and other fundraising efforts they have helped raise more than $5,000 this year.

Her husband Mark was diagnosed Dec. 29, 2010 with glioblastoma multiforme, which is a highly malignant, incurable type of brain tumor. The couple, who have been married 12 years and have two children, were told Mark may have only a year to live, she said. It was hard for them to take it in.

“We actually had our surgery at a different hospital, and then decided to go to MUSC because we were told that that was where we needed to be.”

They began on a clinical trial, which Mark did for two years. He was also on chemotherapy for about four years.

“Then we decided it was time to get off and kind of let his body recuperate. But this whole time, he’s been working. He has coached kids’ baseball, and it’s just normal. It’s been such a weird experience for us. So far all the scans are stable. So we decided back in 2010 that we were going to start advocating for this because there are so few options out there.”

Scott Lindhorst, M.D., a neuro-oncologist in MUSC Health’s Department of Neurosurgery, said patients such as the Siwiks are instrumental in marshaling awareness, resources and funds for brain tumor research. Along with a core group of volunteers, they have made the MUSC Brain Tumor Awareness Month fundraiser a success for the past two years.

“It could not have occurred without their tireless advocacy and organizational efforts. These kinds of patients and their families are true heroes. They allow the clinicians and researchers involved in brain tumor care and research to pursue their ultimate goal: a cure for brain cancers.”

Lindhorst and David Cachia, M.D., also in MUSC Health’s Department of Neurosurgery, are the only two board-certified adult neuro-oncologists in the state. MUSC also has Amy-Lee Bredlau, M.D., a pediatric neuro-oncologist, who is leading brain tumor efforts for children.

All of them face grim days when they have to deliver diagnoses with few treatment options. There is a wide array of brain tumors, Lindhorst said. 

“In the last main classification, there were 133 different types of possible cancers in the brain, spinal cord and central nervous system. They range from those that behave very benignly, to those that are quite aggressive.”

Some patients may live for many years with no treatment at all or even have their cancers cured.

“For far too many, however, their tumor may behave aggressively, and a cure may not be possible. It is for these patients that the struggle for better research and effective treatments goes on. Advances cannot be made without the support and enthusiasm of the public,” Lindhorst said.

In the larger world of oncology, primary brain tumors or those cancers that start in the brain are rare, making up only 1 to 2 percent of all malignancies.

“However, they account for a disproportionate amount of cancer deaths, and in addition, can have devastating neurologic complications,” Lindhorst said. “Brain tumor patients might often have to deal with the rigors of cancer therapy, while also battling the same complications that face stroke patients.”

It’s yet another reason more awareness is needed about these cancers and how best to treat them.

“Increasing awareness will facilitate increased research,” he said. “In 2014, the last year for which we have data, there were roughly 300 malignant brain tumors diagnosed in the state of South Carolina. The majority of those were evaluated or treated at MUSC.”

The Siwiks said they have met many of the people affected by this cancer through their fundraising efforts, even in their own small neighborhood. “I think I’ve met four people who have had their own stories of brain tumors with their daughters or their parents. And that was just from doing around 50 houses,” Terrah said of their “flocking” efforts.

“But to have four people out of 50 tell you they’ve had family members who have dealt with this - it was really nice. It was heartwarming and people were so generous and sweet to us. It’s definitely become our passion.”

It helps on the days when it gets hard. Through the course of her husband’s treatment, they’ve lost friends to the disease, she said.

“We’ve been to lots of funerals. It’s heart-wrenching to see people and their families go through this. Brain cancer is just such a different beast.”

What sets brain cancer apart from some other types of cancer is how it goes beyond the physical effects, she said. “I want people to be aware of how different this cancer is. Your brain handles your memory, your movement. It’s almost like you’re dealing with Alzheimer’s and dementia, and there’s really horrible mental diseases that go along with the physical pain of this cancer.”

She’s excited by advances in research, particularly with the use of viruses that are being used in clinical trials to deliver drugs or genetic therapies to treat these cancers. For the Siwiks, it’s a race against time better fought with patients working hand-in-hand with clinicians and researchers.  

“Because somebody has to do it,” she said. “MUSC has really taken the lead, and that’s all that I really hear about in the community is this once-a-year event. It’s really been low-key, even with them doing it. I think getting patients involved in this who actually live it and see it every day has more of an impact than people who just work around it. It needs more of a voice from people who are living it.”

Lindhorst agreed, adding that it’s patients such as the Siwiks who validate one of the many reasons he became an oncologist. “Every meeting with Mark Siwik and his wife Terrah is a joy. They light up any room they enter. Their passion and advocacy for other brain tumor patients are infectious. They, along with countless other brain tumor patients, make it easy to come to work with purpose, every day.”