Karena Bullock Bailey

In the summer of 2004, a few months shy of her 60th birthday, my mom, Leslie K. Bullock,  started acting strange. Usually excited to attend events and see friends, she was oddly distant. Even disinterested in celebrating her birthday, a normal cause for celebration. My sister and I noticed the change and were concerned after she calmly noted she may euthanize our family pets so she didn’t have to care for them.

We  encouraged her to see her GP, who, at our urging performed a cat scan. Although our mom Leslie didn’t think it was necessary, my sister stayed to make sure she didn’t try and sneak out of it. Quickly, yet not surprisingly,  we learned an aggressive grapefruit size tumor was growing in her left frontal lobe, where all speech and thought are developed.

Considering the shape, glioblastoma was only mentioned as a possibility since it normally presents in a tree-like shape. The greater concern was the size and need to for it to be surgically removed before the swelling and pressure caused a fatal stroke. We moved her to Johns Hopkins and Dr. Henry Brem successfully removed the tumor, and noted the biopsy confirmed it was a glioblastoma. She would be “lucky” if she was alive in 9 months, even with the medical treatments available.

Shock and stun don’t accurately describe the emotions that came with understanding the diagnosis. We all just wanted to get her through surgery and get back to the lives we knew. Little did we understand, nothing would ever be the same. She transitioned into 6 weeks of radiation and lost all of her hair and gained a whole new personality on steroids. Then she began chemo where she quickly exclaimed she would do until it was no longer working. She did not want to be a guinea pig.

Shockingly, she lived a relatively calm, somewhat similar life, although not able to drive or be alone, she could do a lot of things including exercise. And 9 months came and went and suddenly it seemed she may be defying the odds and change the course of this horrific prognosis. Then on the eve of her 1 year anniversary she had a stroke and never spoke again. Soon thereafter she declined and within months was the image of the disease we had heard about.  In late February, the dreaded news came that her tumor was back and growing and the treatment was no longer working. Unable to truly communicate, she looked at the doctor and me and nodded her head acknowledging her initial wish was still true. She hugged her doctor and motioned goodbye and we went home and started meeting with hospice and physical therapists and nurses to keep her comfortable.

By early summer she was completely bed ridden and hard to understand even her facial expressions, but she was hanging on. Most of the doctors noted by this time, it would come on her terms as we were no longer able to understand how big the tumor had grown. Her last three months were terrifying and sad and heartbreaking. It was never clear when or how this would happen, and she was completely dependent on the steroids that were keeping the brain swelling down, but had blown up everything else. She seemed exhausted and tired and sad, but the tumor had robbed her of full expression or feeling so that original distance had returned.

A few weeks before she passed, I sat at her bedside like I did each night and said to her, “I just hope you are OK. I love you so much.” The next morning my mom’s best friend Margot  had received an odd call from her son-in-law who had randomly dreamt of my mom the night before and said she looked him in the eye and said, “I am OK.” Not knowing what had transpired between me and my mom, Margot saw this as an incredible sign. I burst into tears relieved, amazed and totally blown away that in this small way we could communicate.

On September 13, 2006, two days shy of her 62nd birthday, she passed away surrounded by her family. Unlike the doctors thought, she well surpassed nine months and survived for 22. Sadly, the last 10 months were completely devastating.  Brain cancer is like watching someone with the worst cancer suffer alzheimer’s simultaneously.

The only thing that made any sense to me was putting my life into finding a cure for brain cancer. I couldn’t believe when she was diagnosed and when she died, I knew this terrifying disease robbed her of living out the beautiful life she was meant to live.

Since becoming a part of B*CURED, ten research grants have been awarded and partnerships have started with prominent researchers, innovators and dedicated supporters. I could not be more proud to be a part of this organization and see us bring brain cancer research to the next level. There will never be a day I don’t think of my beautiful mom. But through B*CURED I know we are honoring her and bringing greater opportunities to people who face brain cancer.