Advocacy Over Atrophy

I can still tell you a lot of details about Julia’s treatments: the timing; the issues with insurance companies; the side effects of medicines; what it was like to watch her sit in Mayo Clinic and swallow six horse sized pills in one swing without complaint, then have more than 30 vials of blood drawn from her. I can tell you what it was like to sit in the room with the oncologists that gave us both good and bad news. I can remember details of the reports and the options they presented to us. I remember those things because I’ve reread all my notes. I read them through the years of caregiving looking for anecdotes or throwaway comments in which I may have missed answers or opportunities, clues about something we might have missed. And I read my notes again in preparation for this past week, as I travelled to Washington DC for Head to the Hill to speak with members of congress, the senate and their staffers about what it is like to fight brain cancer in America.

It can be a lot to keep this trauma fresh, still. It can be overwhelming to hear other peoples equally tragic stories of their beautiful loved ones, the lost potential, the decline before the death. It was a lot but it was also healing.

My physical challenge this summer is so that I don’t let the muscles of endurance that I earned as a caregiver atrophy in my relatively and reasonably comfortable new life. But I also want to continue to flex my muscle of knowledge through advocacy.

On the Job Training

So much of navigating a rare disease like brain cancer falls on the patient and their care partners. I took the responsibility to manage the health of my wife and fight to extend her life very seriously. But this isn’t over - I want to use the knowledge that comes from experience to advocate for other people who are now suffering or will suffer in the future. To extend hope as a part of Julia’s legacy, and to validate that our hope for a cure in the near future wasn’t in vain.

Brain tumors are particularly stubborn bastards. It’s difficult to get drugs into the brain because of the blood-brain barrier and even still, they’re particularly treatment-resistant. Plus, you’re going after an area so sensitive (your brain) with surgery and radiation and chemotherapy, poisons that just add to the toxicity and damage. 

Everything we are originates in the brain. Movement and language were important to Julia, she was a ballet dancer and a 5th grade teacher. Sure the cancer took these from her, but so did radiation and chemotherapy, and they weren’t effective enough.

We need innovative therapeutics if we’re going to treat brain cancer more effectively and improve quality of life in survivorship.

Trials and Tribulations

The people that get these tumors want to be part of this research. Trials are where the best outcomes for a patient might lie, but there’s also a recognition that while it might be too late for them, they can contribute to the design of therapies relied upon for future generations. That’s who Julia was, a teacher, a mother, thinking about future generations and how her role impacted them.

Julia’s own grandmother was a clinical trial participant for a dementia drug called Namenda, a drug later approved by the FDA in 2003. They prescribe Namenda to brain cancer patients when they’re going through radiation treatment as a way to help maintain cognitive function at a time where treatment causes damage. Who could’ve predicted that a granddaughter would directly benefit from the acts of a grandmother decades later?

In 2021, Julia and I traveled across the US to speak with facilities about clinical trials hoping to find something promising to enroll her in. There was a short window to find a trial because the tumor can grow rapidly and unpredictably, soon it would need to be re-irradiated, which would scar the brain so badly it would disqualify her from any future clinical trials. Radiation causes the MRI scans to look too messy for researchers to reliably study the effects of their drugs.

I can’t describe the relief we felt, after weeks of disappointment, when the neuro-oncologist at Mayo Clinic Jacksonville walked in the room and said, “I have your clinical trial.”

It’s Personal

This week I was able to tell this story to Representative Rutherford from North East Florida. He represents Ponta Vedra and Mayo Clinic Jacksonville, where Julia and I spent a beautiful (incredibly difficult) few months while she was enrolled in a clinical trial. 

We talked about Julia how hopeful and resilient Julia was, and I told him what Mayo Clinic Jacksonville meant to us, what it means to me still, what it means to people with rare diseases to have a place of hope right here in Florida. 

I am grateful for Rep Rutherford’s compassion and his genuine interest in our cause, as well as his responsiveness to what we were asking of him.

There’s a strong economic case to be made about the local impact of federal dollars in the development of new cancer therapies but, in sharing our story, the takeaway is that this has a very real impact on very real people, and there is so much more we could still be doing.

Little Miss Moffitt

When looking for clinical trials, Julia and I also met with a neuro-oncologist at Moffitt in Tampa. He was excited about research they had in the pipeline for new brain cancer treatments but there wasn’t an active, innovative trial for us to enroll in at that time.

But this meeting still inspired hope, though, that there would be something for the future for Julia when she needed it. Hope was a moving target, we just had to keep surviving long enough to make it to the next breakthrough.

In DC this week, I met a researcher who works under that very same Moffitt neuro-oncologist we had met in 2021. His research has been funded by the DoD money that we were continuing to advocate for on Capitol Hill. (Brain tumors are a line item in appropriations that require annual re-authorization). The therapy he’s working on was recently approved by the FDA to begin a Phase One clinical trial. Had this happened just two years sooner, we very well could have been enrolled in that trial. And while it is too late for Julia, the direct action that advocates continue to take in DC has an impact. None of this would happen without the cancer research appropriations we were continuing to petition for.

The work done on behalf of the National Brain Tumor Society matters, it has a real impact across America and beyond. It’s a national effort but has local impacts in Florida. Along with Moffit and Mayo, University of Florida are making groundbreaking advances in the research of brain tumor vaccines with the announcement of a 4-person trial to test an mRNA cancer vaccine delivery system on glioblastoma patients.

(While Julia had Anaplastic Astrocytoma, both AA and GBM are high grade gliomas and Julia would’ve likely been a good candidate for this trial).

There are reasons to have hope. And it’s personal to me to continue to do whatever I can to help progress the cause (I’d be no use in a lab), so if you're convinced to support NBTS, please do, and you can do it through my charity page here.

In a couple weeks, the House will introduce the BRAIN Act, so that research and innovation can begin at the time of diagnosis, with bio-marker testing and changes in the way tumor slides are reported between facilities. With the BRAIN Act, the pursuit for a cure can be given the urgency it requires with a well-coordinated national response.

There’s so much that goes into this bill and, pardon the dark humor, passing it would be a no-brainer.