Amber, Caron, and I jumped on a train into NYC this morning, to go visit Memorial Sloan Kettering and make a decision about the trial we are going to pursue. It was a gray, rainy day, kind of fitting our mood. It’s funny how Caron and I flip back and forth in our moods – sometimes sad or angry that Amber is in this situation, sometimes inspired by Amber’s determination and the support everyone is giving us, sometimes hopeful that there is a path forward and God is leading us in the right direction. And that whole emotional roller coaster repeats roughly every 5 minutes of every hour of every day.
Much work has gone into this visit with MSK already, with CCMC working with multiple hospitals to determine what trials Amber is eligible for, ultimately identifying a few at MSK that have the greatest potential. So today, we met with Dr. Kramer again, and then met with the geneticist. For now, we are pursuing two paths: genetic testing to determine if there is an underlying “predisposition” (a root cause) to attack, and a trial of a drug named “pembrolizumab“. While the doctors did a great job of explaining terminology while still going into depth, for sake of this blog post it boils down to this drug helping the immune system get past the defenses of the tumor and attack it.
So, next week (hopefully – schedule TBD) we return to MSK for an MRI, X-ray, and to begin the infusions. The infusion takes about 30 minutes, and then we return every 3 weeks for another infusion and an MRI on alternating visits, possibly for the next 2 years.
If this drug does not appear to be helping and the tumor continues to grow, our current “fallback” plan is to leave the trial and go in and surgically remove the tumor. But given the risk of brain surgery, even in Dr. Martin’s skilled hands, we are going to pursue this trial first.
And we will keep investigating other trials, treatments, options, trying to make the best decisions we can as we go. Please pray that we find the best options and make the best decisions along the way.