Following a diagnosis of an aggressive brain tumor and doctors telling her she had only 15 months to live, a 27-year-old Florida mother took a deep breath, prayed with her husband and started a blog.
One prayer and written word at a time, she began recounting her experience, beginning with the headaches.
“I’ve come to realize that I just have to take everything one day at a time. I can’t dwell on the what ifs because if I do, I won’t enjoy the moments that I have now,” Stephanie wrote in her first blog on Feb. 18, 2017.
About four months prior, Stephanie started having intermittent migraines. They became so intense and painful, she decided to go to the doctor. After CT scans, an MRI and a callback to her physician’s office, Stephanie and her husband Michael waited for what they just knew would be tragic news.
“Sitting in the waiting room for those results was so agonizing … he pulled up my scans and then we saw it. Right smack-dab in the middle of my brain,” Stephanie wrote.
Stephanie and Michael met with neurosurgeons, the lesion was biopsied and the news kept getting worse. She had a grade IV glioblastoma tumor.
Glioblastoma multiforme (GBM) is the most common and aggressive brain tumor in adults. Brain tumors are graded based on their aggressiveness. Grade I brain tumors are the least aggressive, and grade IV are the most aggressive. GBMs are grade four – they grow quickly and often spread into nearby brain tissue.
As the tumor continues to grow, pressure increases within the skull. Some of the symptoms of GBM are caused by the increased pressure in the brain and include headaches, tiredness, and problems with speaking, memory and concentration.
Doctors told Stephanie and Michael that due to the location and the risk, the tumor was inoperable.
“So I have the worst kind of cancer in the worst place possible. Awesome. I would be lying if I said I wasn’t devastated by this news,” Stephanie wrote. “Hearing that statistically I have 15 months to live is just heartbreaking. I’m only 27 years old, I have a beautiful 2-year-old daughter and I love my husband more than anything on this earth. How could this be happening!?”
Within hours of writing her first few blog posts, OU Medicine Stephenson Cancer Center neurosurgeon Dr. Michael Sughrue had read Stephanie’s blog through a series of shares on social media. He reached out to her and asked to take a look at her case.
“Hopefully by now you realize that coincidence just doesn’t exist,” Stephanie wrote after talking to Sughrue. “We were extremely anxious about getting his opinion because we have had a couple surgeons look at my scans and they just won’t touch it.”
On Feb. 24, 2017 – less than a week after Sughrue read the blog – Stephanie was in an operating room at OU Medical Center.
Sughrue's practice focuses entirely on adult brain tumors, and he performs nearly 400 brain- tumor operations a year. He specializes in removal of gliomas from critical brain regions, such as speech and motor parts of the brain, skull-base surgery, keyhole brain surgery, endonasal endoscopic skull base surgery and acoustic neuroma surgery. He is often able to successfully remove many brain tumors deemed inoperable at other centers.
Sughrue said patients should be given enough information to make difficult decisions regarding their own health care, even when the stakes are high. He presents the facts, what may or may not happen, and then the patient can decide what route to take – not just the doctor.
“For people who are told they have two months, to be given two more years is meaningful. Many significant things can happen in two years,” Sughrue said.
It wasn’t an easy decision for Stephanie to have the surgery. She kept looking and praying for reassurance. Following her surgery, Stephanie’s husband Michael took to his wife’s blog:
“(He) informed us that he had removed 95-98 percent of the tumor … I was floored. He also commented on how it ‘peeled off’ easier than he expected. So not only did he remove more than he expected, it went smoother and quicker than he expected. MIRACLE. That’s the only word that came to mind. Through all the prayers over the last week plus from thousands of people across the globe, he has given us a miracle,” Michael wrote.
Treatment for GBM is aggressive. It usually involves surgery, radiation and chemotherapy. GBMs tend to occur between ages 45 and 70, but it can also happen outside of that range.
So far, Stephanie has undergone 29 days of radiation and around 40 days of chemo at Stephenson Cancer Center. On Wednesday, she’ll receive her last radiation treatment at Stephenson before heading home to Panama City, Fla., with her husband and daughter.
“I never thought that this is where I would be at 27, but here I am,” Stephanie wrote on April 11. “And here I will stay, continuing to share my story and the miracles that have already happened and the ones to come.”