Local group supports patients and families coping with brain tumors
5:26 PM, Mar 22, 2013
6:32 PM, Mar 22, 2013
LAWRENCE, Kan. - When someone is diagnosed with a brain tumor, it is a battle they will fight for life.
There are more than 120 different types of brain tumors and there is no cure for any of them.
At the age of 3, Sarah Burrichter's mother, Kristine, noticed some small changes in her daughter.
"She would act as if she was getting sick," said Burrichter. "She'd be acting normal, running around, being a joyful 3-year-old child and then she would stop and feel as if she was going to be sick. She would just have these moments where her heart would race, she just had this intensity about her. Then she never really got sick afterward. It would be just a few moments, then she would come back to her old self and run around."
These moments would happen sporadically for the next year, until one day in 2004, Sarah had a reaction during breakfast.
"She stopped, her eyes started tracking something, she couldn't hear my voice, didn't understand what I was asking," said Burrichter. "Then after 10 seconds, she blinked her eyes and came back to me."
Burrichter immediately brought Sarah in for an EEG. The brain scan came back showing no problems.
So Burrichter pushed her doctor to perform an MRI and the result that came back shocked her.
"On Oct. 28, 2008, they discovered a large mass on her brain," Burrichter said. "Your whole world stops. Nothing else matters in that moment. You hear that news and it takes you a while to absorb it. I don't think you really come out of it."
As Burrichter and her husband sought to figure out the next step, a friend put them in touch with Gail Mullin and an organization call beHeadstrong.
"She called me directly and reached out and she gave me the strength in her words and through her experience," said Burrichter. "Sharing with me what it felt like to have someone you love, diagnosed with a brain tumor."
Sarah has since had part of the tumor removed from her brain. She currently receives chemotherapy every month and Burrichter says she is doing incredibly well.
"There is nothing she sees that she can't do," she said. "One of the things that I see that gives me courage is her determination."
Burrichter said beHeadstrong played a big role in getting her family to where they are today.
Mullin and her husband, Rob, draw on their own experience to help other families. Rob was diagnosed with a brain tumor in 2003, after not feeling like himself for a while.
"I worked at Sprint, and we were doing some layoffs so I was always really stressed, which I thought was because of the layoffs," said Rob.
After suddenly losing his peripheral vision in his right eye, Mullin went in for an MRI.
"Just this prominent huge, orange-sized tumor stood out like a sore thumb," said Gail Mullin.
Rob Mullin underwent surgery to remove the tumor. Luckily it was located in a part of his brain where doctors could remove all of it.
But his prognosis was still four to seven years.
"We said, ‘well, we're going to make the best of those years,'" Gail Mullin said.
So they decided to start an organization to help other families cope with what they were going through.
Part of their inspiration was their friend, J.R. Waisner, who had the same kind of tumor Rob Mullin had, lived for nine years and passed away.
"Pretty much on his death bed, we asked, ‘What do you need, what do you want?'" said Gail Mullin. "We were thinking more specifically his family. He said ‘I want you to start an organization to help people in the KC area. I want people to have financial help, if they need to travel, if they need groceries, kids who need school supplies or school clothes."
Learning a loved one is diagnosed with a brain tumor is devastating enough for a family. The cost for hospital stays, tests and treatments can make the situation even worse.
"One hundred dollars here, $200 for gasoline, may not seem like a lot," said Gail Mullin. "But when you're just dealing with the diagnosis and having to deal with the financial responsibilities, it's overwhelming. So we want to be the part that says, focus on your child, your husband, your neighbor, we'll help you with the financial piece."
Through fundraisers, corporate grants and sponsorships, beHeadstrong is able to financially support these families. And nearly every dollar raised goes directly to patients because everyone who works with the organization volunteers their time.
"No one is paid a penny for their services," Gail Mullin said. "We don't want to make any money off of this, it all goes right back to the patients."
Fortunately for the Mullins, Rob just celebrated his 10th year since his diagnosis. With every day that he lives, they want to make sure other families have support and love during what will likely be the most difficult time of their lives.