I started this fundraiser after I went to the ER in late August 2025 so I'd be ready if my brain cancer progressed. I never wanted to share it with anyone, and I hate that it's come to this. But glioblastoma isn't called "the most malignant brain cancer" because it's a push-pop on a hot summer walk in the park.
Unfortunately, it's progressed; an MRI on Wednesday, July 8, 2026 revealed a new 17mm tumor on my Corpus Callosum. This means I'm out of the very promising clinical trial I was in, and the new best option is a multi-pronged attack to include: surgery (if possible), spinal tap, more radiation, wearing an Optune on my head 24/7, and custom peptide/dendritic vaccine therapy currently only available in Europe and very expensive, both for the treatment and traveling for administration.
I originally went to the ER in late August, 2025, because my right side wasn't working. An MRI found a 2.9cm tumor in my left temporal lobe. A brilliant emergency surgery on 9/2/25 resulted in a gross total resection, but the genetic tumor testing revealed it's Glioblastoma, a malignant brain cancer for which there is no cure. Yet.
I was fortunate to get into an expanded access protocol of a clinical trial drug called SurVaxM that has shown a good deal of success in early trials. Being in an EAP meant I was guaranteed to get the drug, not a placebo. Things were going great until my July 9th MRI revealed a tumor progression--a new 17 mm growth in my corpus callosum, the part of the brain that connects the two hemispheres.
I'll begin new treatment(s) this week. I'll also be sending tumor samples to an advanced customized treatment center in Germany, where they'll identify numerous biomarkers in my tumors genetic code that offer potential attack vectors. Over the next 4 to 6 months, they'll craft, refine, and manufacture a customized set of immunotherapies designed to train my immune system to attack my specific tumor.
One of the many reasons glioblastoma is so hard to treat is that it hides itself from the immune system and it's hard to get treatments past the blood-brain barrier. This German Clinic is doing great work and will begin clinical trials for FDA approval stateside very soon.
However, it won't be soon enough for me, and there's no guarantee that I would meet all of the eligibilities for the clinical trial anyway. I need to get the manufacturing underway ASAP so I can get the immunotherapies injected ASAP.
This analysis and manufacturing of customized treatments in Germany and subsequent administration in Lithuania is going to be very expensive, and it's going to mean I'm missing a lot of work.
It also means I'll be missing a lot of watching my boys grow up. They're five and eight now, and they'll be six and nine before I know it. I'm determined to watch them grow up, be a father and a font of unconditional love, work until I retire, experience empty-nest syndrome and grow old with Megan.
And so I humbly, gratefully, and desperately ask for your help. I've been in inpatient rehab and then day rehab since 3 days after my surgery. I've been working incredibly hard and made great progress. I've even gotten back out on the golf course and got certified for adaptive golf, and played in two adaptive golf tournaments this summer.
I'm receiving a "Bravery Award" from Chicago's biggest brain tumor charity, brain up, at their annual 5K walk run in September, which I believe is the glioblastoma equivalent of being knighted. I won't make you call me "Sir Cully", though (unless you really want to).
I've been walking without a cane since January and made a ton of progress that I want to build on, not watch crumble away.
I was planning to have my website a lot more beefed up before having to launch this go fund me, but you can follow my progress at www.tumorboisummer.com.
I'll be updating it with both backstory and progress as time and energy allow. This neurological rehab thing is no joke--I can't tell you how exhausting it is to try to exercise fine motor control on your right side with
the right side of your brain when the left side of your brain has been doing it your whole life.
And here's the new little problem:
