The diagnosis at the time of Jason’s biopsy in July was “suspected H3K27” glioma, also known as “Diffuse Midline Glioma.” It doesn’t take long on Google to understand how devastating that diagnosis would be. It’s a worst-case scenario in every way – prognosis of “weeks to months” regardless of treatment.

But medical students are taught that when it comes to cancer: “Tissue is the Issue.” There is no diagnosis until there is a biopsy-proven diagnosis. So, the UNMC team did the right thing and didn’t call it until the biopsy came back.

And that’s a good thing because the suspicion was wrong. Thankfully, wrong.

Instead, the biopsy came back as IDH-mutant astrocytoma – a different kind of glioma brain cancer. It’s still crushing to have brain cancer, but oddly, we’re grateful. IDH-mutant astrocytoma tumors are further graded based on their genetic and microscopic features from 1 to 4. Simply put, 1 is good, and 4 is bad. Jason’s astrocytoma officially is “grade 3.”

However, Jason’s cancer didn’t follow the rules. Go figure!

His has some features of a less aggressive, lower-grade tumor, yet also some genetic features of a more aggressive, potentially grade 4 tumor. I like to think of his as “grade 3-ish.”

Moreover, most astrocytomas are in the upper or outer parts of the brain and can be at least partially removed with surgery. Jason’s is deep inside the brain in a location that is not resectable. Using one neurosurgeon’s words: “I could remove all or part of it, but you wouldn’t leave the hospital.” Gulp.

All of that to say, without fitting into a particular cancer box and without any option for resection, Jason’s prognosis is impossible to predict, and treatment could be endlessly debated.

If the tumor is aggressive, as the location and some of his tests suggest it is, then it will continue to grow in a critical area of the brain, and the consequence of delaying treatment could be irreversible and neurologically devastating.

But if the tumor is less aggressive, as some of his other tests suggest, then he may not have progression of symptoms for months, and treating it with potent, traditional therapies with their likely side effects could be irreversible and needlessly devastating to his quality of life now.

What should we do?

What would you do?

The weight was heavy.

So, we elected to defer that weighty question to the experts. We headed to Mayo Clinic in Rochester, Minnesota, to consult with the best of the best – literally the doctors who are writing the books on glioma treatment. It still blows my mind that Jason’s tumor was reviewed by a world-renowned glioma neurosurgeon, a double-board-certified neurologist/neuro-oncologist, and a central nervous system radiation oncologist. Smart dudes!

We would have signed on the bottom line if they had asked us to as soon as we met the first doctor – Dr. Neth, Jason’s Neuro-oncologist. Minutes after meeting us, during the usually boring medical history-taking part of the appointment, Dr. Neth asked Jason how long his tongue had been affected. He noticed Jason had a “slight slurring” of his words. No one (no doctor and not even friends or family!) has commented on Jason’s slurring, but Dr. Neth picked up on it within minutes of meeting him. Jason’s cerebellar signs, loss of sensation in his foot just from watching his gait, his eye movements, and even how his hands likely affect his typing at work – he noticed it all. Incredible. Even more amazing, he laughed at Jason’s horrible “that’s been on my mind” joke. He’s clearly gifted by God.

The Mayo miracles continued in the short two days in Rochester. There are so many more amazing stories to tell someday.

But for now, in short, we have answers to many of our questions (and prayers), we have a repeat MRI that shows the tumor hasn’t grown since surgery, and we have a treatment plan that we understand, completely support, and is recommended by one of the best oncology teams in the world. It’s not a stretch to say we are oddly excited about treatment.

But it’s still cancer treatment.

There’s a tiny chance someone will have a different, brilliant idea when the Mayo Tumor Board discusses Jason’s case next Thursday. But currently, the verdict from the experts is to treat the tumor with a special proton radiation therapy (i.e., the “laser beam” as we told the kids) for 6 weeks, followed by 12 months of cycles of a chemotherapy pill.

This is the best chance of killing the cancer with the lowest chance of side effects.

(Based on what they know about Jason’s cancer, they have some concern that the tumor is harboring potentially higher-grade cells that were just not detectable on the small biopsy sample. Therefore, they would not recommend the less aggressive therapies like observation, IDH blockers, or experimental therapies that “may work in a petri dish but may not in people with high-grade tumors.” Conversely, they also would not recommend traditional radiation therapy with a traditional radiation oncologist, as they would expect the usual “scatter” of the radiation would harm healthy brain. That may be acceptable in some cancers, but in the location of Jason’s tumor, that scatter would cause hearing loss, memory loss, and potentially worse sensory and motor function in his arms and legs. Alternatively, the proton radiation they recommend is more precise and could avoid most, if not all, of those side effects while still frying this damn thing.)

The choice to do proton therapy is a “no-brainer” – pun intended. But proton therapy is not available just anywhere. So… Mayo Clinic will get the honor of hanging with the Newmans a little longer.

Assuming no change after the tumor board meeting and no hiccups with insurance or scheduling, Jason will start proton therapy in mid-September. He will stay in Rochester for 6 weeks, Monday through Friday, for daily therapy with breaks on the weekends.

It will be a long 6 weeks for all of us, but in the end, it’s a short sacrifice to be able to have doctors talk about potentially “years” of life after treatment.

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish INFINITELY MORE than we might ask or think.” Ephesians 3:20