- Diagnosed with: Glioblastoma
- Location: Minnesota
- Navigator: Laura D. Hynes
BTN was helpful in that they made relevant trials known to us. They held our hand, telling what we ought to consider, whom we ought to contact, and what resources were available to us. They were “information central” in a way.”
Told by spouse/caregiver of patient
Our son discovered the Brain Tumor Network online. He connected with BTN Navigator, Laura Hynes, and really encouraged me to speak with her, as she would be able to tell us what trials might be available for Chad. We had been so suddenly immersed in information- so many new terms and so many choices. We also had relatives with opinions: “I’d never have radiation!” or “I wouldn’t do the chemo!” No one really knows what they would do until they are in the exact same position. We knew this so it was easy to discount the opinions of non-professionals. We knew that we had to figure this out for ourselves. BTN helped us filter through the information in order to pick out what was most helpful for us. After surgery, Chad chose to follow the Stupp: Temodar and radiation, and he entered a clinical trial.
We first learned that something seemed to be going on when our son told us that it had taken his dad 45 minutes to arrive at their home, which was only 15 minutes away. I didn’t think much of it. That Sunday I noticed that he was “listing”, meaning he was noticeably leaning to one side while sitting in a pew at church. Still, I dismissed that, too. He seemed fine in every other way, but our son and daughter-in-law thought something was not right. About a week later, Chad began searching for a doorknob where there had been a door four months earlier (we had been remodeling our home for several months). That is when I was sure that something was wrong. I thought he’d had a stroke. Within an hour, we were driving to the emergency room.
Never did it occur to me that Chad might have a brain tumor. That wasn’t even on my horizon. A scan was performed at our local hospital. It didn’t seem to be a stroke -- they said that they detected “a mass.” I didn’t know what that meant. I didn’t know what to expect. I was afraid of the unknown. And when we learned about the possibility of a brain tumor, I was even more afraid. Chad was in surgery within three days, and we were in shock. But a gentleman occupying the adjacent hospital bed cautioned us not to accept “the statistics;” his brother-in-law had been diagnosed with a brain tumor many years ago and he was doing well. That was helpful. BTN was also helpful in that they made relevant trials known to us. They held our hand, telling what we might consider, whom we ought to contact, and what resources were available to us. They were “information central” in a way. They connected us with different trial options. In the end, they helped connect us to a trial at the University of Minnesota.
As I write this, it has been 15 months since Chad’s diagnosis/resection. He’s had no recurrence. All of his scans have been clean and he has tolerated the radiation and Temodar amazingly well.
This hasn’t been the immediate death sentence that we were told to expect; we have met and read about so many patients who have not succumbed early to this disease. Chad appears to be in that category. This gives me hope, because every day that he survives is one day closer to the cure. I know the cure will come. The researchers are so dedicated, so diligent. They are turning over every possible stone. We are encouraged.