The first time "trial" really meant something to me was July 2007 in a doctors office with my mom (4 months post brain tumor diagnosis) and dad. She was a partially decent candidate for several clinical "trial" studies for treatment of her GBM. I guess you realize in those times that standard protocol treatment for a terminal cancer just isn't going to cut it. You're really willing to go out on a limb and risk something to gain your normalcy of health back. (I say all of this as if I really know that's what my mom thought...but at least that's what we thought for her!) many of the trials only accepted 1-10 new patients/phase or year, or only had a <10%survival rate because there were only 4 people that had completed the trial case at the time. But the goal is for these mad scientists to prove that something can be effective. And they push the envelop as far as they can until they realize it can't be pushed anymore and then they back off to find the perfect ideal solution for harmony and killing the tumor before the tumor kills the patient. Most patients say, "well, what have I got to lose?!" They know the cancer will eventually kill them, why not try a treatment that might cure them?
So we started looking at trial studies.
For some reason, I had been given much peace about one particular study her doctor had placed before her. And it was far out. Mom was the only patient to enter the study in the area. She would undergo a second brain surgery to have a catheter inserted right on top of the tumor bed, and a flap of her skull would be removed. From this catheter a little port would stick out that could be accessed on a weekly basis and she would recover 3-6 doses (it was a lottery draw on her dosing!) of a drip of medication that would be forced through the port into the catheter straight to the tumor. The meds....get this....GIANT YELLOW ISRAELI SCORPION VENOM! Along with some radioactive junk. It apparently was supposed to go crazy on the tumor. So we signed up. Two weeks after surgery she got the first dose. Problem. Second dose, same problem. It didn't want to stay in and it kept, grossly, leaking out of her incision from the surgery. After a couple of ER trips and re stitching, a unanimous decision was made for SURGERY #3 just about a month later to remove the catheter. We felt as if we had gotten no where. Two unnecessary brain surgeries made for more difficult recovery. It meant there needed to be a new trial. She proceeded to move through two other clinical trials, one of which was granted FDA approval shortly after her death (and she was a POSITIVE statistic on it bc it was helpful) but we rejoiced that she was able to be a part of such a great movement (WOOOOOHOOOOO).
That was 6 years ago. It's unreal how much life and science changes and how technology grows. I was absolutely floored and glued to the tube tonight as we watched 60 minutes (yes, it's kind of a family thing on Sundays) and they did a story on GBMs and treatment...a new trial, using the polio VIRUS to anielate the tumor. And it apparently works. Like, for real.
One girl, tumor in 2012, recurrent in 2012, it's gone now. Unbelievable. I was emotional the entire time. Sad that mom could get that treatment. Happy for the patients that can receive it. Disheartened for those patients who have hope in the suitability and performance of it, but it proves too wreck less on their body and the cancer kills them anyway. It brought back such memories of those moments of having to make the decisions of whether or not to join the team of this trial case or that trial case. It was our choice.
But most often, we don't always get to make the choice for our own trials that we face. In fact, if we had it our way, we would mark our name off every list and hide in a hole and never test out our performance at anything so we wouldn't cause our own selves to fail.
But I'm reminded tonight of one evening that I sat in a bunk bed at the hospitality house across the street from the hospital after that last surgery wondering "what's next?!" and I was reading my Bible I turned to Peter's encouragement to his friends who were scattered and feeling a little helpless themselves and he tells them this:
In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ. (1 Peter 1:6-7 ESV)
The suitability and performance of something may fail....but HIS praise shall forever be on my lips.
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