This is what I have been told twice in the last few days. This phrase brought me to tears today in front of three doctors.
“Don’t Let Perfect Be the Enemy of Good!”
So as a reminder, Travis and I were supposed to travel back to DC this coming Tuesday to start a trial called Mage. This trial is not the trial that we originally wanted, but we were excited when the doctors explained to us last week that they would put Trav on the Mage trial to give the scientists time to PERFECT the TIL trial (that’s the T cell trial that I explained a few blog posts back in What a Guy. What a Trial.).
I can’t tell you how excited I was that we were going to get the “new and improved” TIL trial. All you have to do is google the name Melinda Bachini and you will see why I was so excited. She is the Cholangio patient and our friend who went through the TIL trial and she is kicking Cholangio big time!
She actually went through TIL twice. The first time was through what I call the “crap shoot” way and the second was what I call the “new and improved” way.
Let me just say that I am not meaning to insult this awesome trial in any way by saying “crap shoot”. It’s just what makes sense in my head.
“Crap shoot” means that they take a combo of any of the T Cells from the tumor that happen to grow well in the lab and inject them back into the body. Hoping that they put enough of the right cells in to knock the cancer back. Hoping that SOMETHING works!!!
“New and Improved” means that they send the tumors off for testing. Find out which T Cells might react well or kill the cancer cells. Then they specifically grow the “RIGHT” cells in the lab.
This way when they get to the cell injection part of the trial you KNOW they are putting the cancer fighters into the body. Raises the odds quite a bit.
Well, plans have changed and we were rushed back to DC this weekend. As Kristina wrote in the previous blog post, Travis has an infected incision, two blood clots (one in the leg and one that broke loose and made it to the lung. Thank you God for your protection over Travis with the blood clot. It could have been much worse.) Also, he has fluid around his heart and they are not sure why.
Today, three doctors came into our room and sat with us. They are amazing here at the NIH. The doctors apologized today for changing the plans constantly, but they explained that Travs case will have a moving plan depending on well… His body.
As of today the plan is… That Travis will have an ultra sound of his heart tomorrow. (Monday morning) Please pray that his heart function looks strong and that there are no other surprises.
They are going to continue treating his incision which is still draining. The infection is improving with antibiotics.
And, they are also giving him blood thinners through injection twice a day.
So, it looks like they will most likely send us home with blood thinner injections this week and then have us return in a week or two. At that time they will re check everything.
Also, at that time they will put a filter into a vein in his groin area that will protect his lungs, heart, brain… from that blood clot in his leg.
The reason that they have to do that is because Trav will not be able to continue with the blood thinners during the 3-4 week trial process.
If he looks good he will be put on the TIL trial. The bad news is that it will be the “crap shoot” version of the TIL trial.
Yes, his tumors are off being tested right now, but the testing will not be done in two weeks. Maybe not in four weeks and maybe not in six. Who knows when they will actually have that PERFECT cell determined? And then they have to have time to grow the PERFECT cell into billions of cells.
As we sat with the doctors today, I kept asking over and over in different ways if we could wait just a few more weeks and do the trial after the testing was done. If they could rush the testing. If there was any way that in two weeks the results would be in…
One doctor finally looked at me and said, “NO. There is no way that we will have the results in time.” Then Travis looked at me and said, “Carrie, let it rest. Burry the idea. It’s not happening.”
Tears burst and the idea of the perfect trial was crushed. The crazy thing is that we were excited about the “crap shoot” option just a few weeks ago. We are still excited about it. It’s the same treatment that Melinda Bachini was given her first go round. It worked well enough to get her to her second treatment where they had time to do the testing.
Its just hard because out of the 14 patients who have been through this trial, she is the only one who has had success with the “crap shoot” version. So you can see why I was excited about the other.
The doctor who boldly told me NO today is also the doctor who said,
“Don’t let perfect be the enemy of good”.
I get it Doc, If we wait for PERFECT Travs body may not be well enough to take the trial. If we wait for PERFECT we may have other unwanted surprises arise.
So…We are fighting for GOOD right now.
We are gladly fighting for this “crap shoot” option because two months ago we thought that we were out of options.
So my tears only lasted moments. We are so grateful for GOOD!
Now, we just have to get there.