PORTLAND, Ore. (KOIN) — Dr. Alex Butler is a pediatrician and a mother of 2 children. Her husband, Khayree Butler, is a surgeon. While they’ve been around hospitals most of their adult lives, Alex never thought — at 37 — she’d find herself on the patient side facing a deadly and rare brain tumor.
She got the news about 6 months ago. Though there is no cure for her type of tumor — Anaplastic Oligodendroglioma — she decided this wasn’t going to be the end.
In late April she began treatments, including several rounds of chemo.
“Twice while I had really high fevers I woke up from sleep with my left arm moving up in the air totally out of my control,” Alex told KOIN 6 News.
Over these past 6 months, she’s met numerous times with her doctors at OHSU, including Dr. Seunggu Jude Han.
“Even among brain tumors her tumor, an Anaplastic Oligodendroglioma, is a very rare subtype,” Han said. It is a genetically distinct tumor but there’s not enough research on it becasue it is so incredibly rare.
They decided to fundraise for research money specific to her tumor by using a platform called Consano. It’s part of a new movement to connect people directly to specific medical research projects.
In Alex’s case, it’s connected her with Oligo Nation, and her goal is to raise $500,000. At the time of this story, they’ve raised about $20,000.
Dr. Han said because the tumor’s nature is to grow slowly, this fundraising could actually make a real difference. “It could have an impact on how her care evolves over the next decade or two.”
Alex is determined and a big part of her motiviation comes from her kids, ages 7 and 4.
“We’re such a happy family and we’re doing so much together, the thought of not being there for the kids and my husband, there’s no way to actually describe the feeling there is when you are told that.”