April 2019 Health Update: Tumor Growth and a New Treatment Plan

Bubble Girl May Happen

I’m hitting pause on my usual storytelling for Sick Girl Diaries to bring you an important update. If you’ve been following my journey, you know that life with a brain tumor is anything but predictable. April 2019 brought some unexpected news, and I wanted to share what’s been happening as I continue to fight this ever-evolving health battle.

April 12th, 2019: The Unexpected News

Doctor’s Appointment:
On April 12th, 2019, I went to see my neurosurgeon, Dr. Marcus Ware, and my new endocrinologist, Dr. Susan Karam, at Ochsner in New Orleans. It was supposed to be just another routine check-up after my MRI. I walked in feeling hopeful—after all, I thought we were just coasting for a while.

The MRI Results:
That optimism didn’t last long. Dr. Ware greeted me with a smile, but as we reviewed my MRI results, his expression changed. “Your tumor has grown,” he said. The news hit me hard. Though it wasn’t as large as before, the tumor had moved dangerously close to my hypothalamus—a small but critical part of the brain that controls a lot, including body temperature, hunger, and emotions. Surgery was off the table due to the risks, leaving us in search of new treatment options.

The Search for a New Treatment Plan

Professional Consultation:
Dr. Ware and Dr. Karam decided to present my case at an upcoming medical conference to get fresh eyes on my situation. With no immediate solution, they postponed my follow-up appointment, initially set for April 2nd, until April 9th, to allow time for consulting with other specialists.

April 9th, 2019: Treatment Options:
At the rescheduled appointment, they laid out two possible treatments. Radiation was a no-go because of how close the tumor was to my eyes; the risk of losing my vision was too high. Instead, they suggested trying Dexamethasone, a steroid. But here’s the kicker—I had already experienced extreme Cushing’s Syndrome from a high dose of this drug years earlier. This time, they assured me the dose would be much lower, just 0.75 mg, which would hopefully avoid those same severe side effects.

Starting the New Medication:
On April 10th, I started the new Dexamethasone regimen, fully aware of the risks but trusting my doctors. The tricky part? This steroid weakens the immune system, making me more vulnerable to infections. So basically, I had to be Bubble Girl, avoiding germs like they were the plague—because for me, they basically are.

Managing New Symptoms and Complications

Illness and Infections:
By April 14th, things took a turn. I developed a dry, persistent cough, making it hard to sleep. At the same time, I was battling a urinary tract infection (UTI)—and surprise, surprise, steroids make UTIs more likely. According to my internal medicine doctor, Dr. Boyd Benefield, this was just part of the steroid side effect fun.

Fever and Fatigue:
The cough and fever dragged on until April 19th, and I was feeling wiped out. Dr. Karam had me double my steroid dose for three days to get the fever under control, and while the fever eventually broke, I remained on antibiotics to kick the UTI. Yay for small victories, right?

Bubble Girl Life:
Determined not to get any sicker, I became obsessed with hand sanitizer and antibacterial wipes. I wiped down every public surface I touched, trying to protect myself from the onslaught of germs lurking out there. But even with all those precautions, I still managed to get sick. Bubble Girl, indeed.

Reflections and Moving Forward

Constant Vigilance:
Living with a compromised immune system is no joke. It requires constant vigilance. No matter how careful I am, infections seem to find their way into my life, reminding me that managing multiple health conditions simultaneously is a never-ending battle.

Engagement and Support:
To everyone who has supported me through this journey—thank you! Your comments, questions, and kind words mean the world to me. If you’ve got any questions or just want to share your thoughts, feel free to leave a comment below. Together, we’ll keep pushing through this.