Okay, so I know I keep saying that “this is a really crazy post” and I’m probably starting to sound like the boy who cried wolf, but it really does just keep getting crazier and crazier! Let me first start by saying that I am 1) exhausted beyond all measure and 2) I believe our God is one of the most crazy amazing and creative beings we could ever imagine.
Do you guys all know the story about the man and the flood? To refresh your memory, the story goes something like this: A flood is coming. A neighbor knocks on a man’s door and says, “A flood is coming, you better take this life preserver and get out with me while you can!” The man says, “No, my God will save me.” An hour later, as the flood waters begin to rise, a rescue worker paddles by in a boat. He tells the man, “Get in this boat and ride to safety!” The man again replies, “No, my faith is strong. I know my God will save me.” The waters overtake the house and the man climbs out onto the roof. A helicopter hovers low and drops down a line saying, “Grab hold of this rope and we will fly you to safety!” The man again replies, “I’m fine, my God will save me.” Then the man drowns. When he gets to heaven, he says to God, “I had such faith in you. Why didn’t you save me?” God replies, “I sent you a life preserver, a boat, and a helicopter! What more did you want?
Now I’m going to tell you a story about what happened yesterday. There is so much to tell, but I will try to be as concise as possible so this post won’t be ridiculously long. After an exhausting trip to get the kids home from LA to Atlanta, Kevin and I made our way to Bethesda, Maryland, where we had an appointment with the National Institutes of Health. The purpose of the appointment was to try to get a surgery done where Kevin would have some immune cells harvested to prep for Plan F in case Plan E didn’t work.
In case you are a little lost, Plan E is a the VEM/MEK combo trial that we got accepted onto at UCLA but that our study coordinator there was getting transferred over to Vanderbilt for us, since Vanderbilt is only a four hour drive from Atlanta. Are you following all this? Basically, we had a perfectly orchestrated plan that involved a million little details falling into place including cross country trips, timing of surgeries, and coordination of huge research institutions. Big surprise things didn’t go as planned?
So anyway, the whole purpose of the D.C. visit was to get this one surgery done before we start treatment at Vanderbilt next week, that’s all you need to know. Well, we walk into our appointment in D.C. and tell the doctor that we are starting the Vanderbilt treatment next week and she tells us that she didn’t know we were doing that trial, and that if she’d know that, she would have told us not to come because they can’t do the harvest before starting that trial because the treatment would change the biology of the cells and make the harvest useless and that we would need to do it after we were done with that treatment.
Are you following any of this?
I know, me neither? Basically, we are sitting there thinking, “Well crap, did we seriously come to D.C. for nothing? Did we delay treatment and waste friends’ resources like apartments and planes for nothing?”
She leaves the room to check with another doctor and as she walks out the door, I notice a new email on my phone from the Vanderbilt doctor. This is the one who our study coordinator at UCLA was supposed to have been coordinating with to get us all transferred over and ready to start treatment before next Friday. The rules of the trial state that we have to start the trial by next Friday. The Vanderbilt doctor basically says, I have no idea why you thought you were starting treatment here next week. That is completely impossible and if you want to start treatment, you will have to start at UCLA and then try to transfer over after a few cycles of treatment.
Wait, what? Did he just say that our whole, perfectly orchestrated plan fell apart and that the only way for Kevin to get treatment, ANY treatment is for us to fly our impossibly tired selves BACK to Los Angeles? That is if UCLA is even ready to treat us? What the heck is going on? I page our UCLA contact and set the page as high importance. I write back to the Vanderbilt doctor asking if anyone from UCLA contacted him a few days before about us starting next week. He writes back again re-iterating that he can’t see us next week but not answering my question about whether anyone has actually discussed this with him.
Kevin and I are about to cry.
We look at each other, hold hands, and try to pray. We try to set our minds on something, anything comforting. We start texting friends asking them to pray for us because we just can’t get it together. We look up Bible verses and start trying to figure out what, if anything, God is doing in the midst of this.
Finally, our doctors come back in and confirm that we can’t do the surgery before the VEM/MEK trial, but also sit down to ask us about why we were going to do that treatment as our next option anyway. Dr. Hughes especially is very concerned because, according to her, there is still not any data to suggest durable responses and the TIL therapy, although a pretty grueling treatment, still has the chance of being curative. A 50% chance, no less. We tell her that at that exact moment our other treatment options seem to be falling apart anyway, and so please tell us more again about the TIL therapy, when we could start, how it works, side effects, time off from work, etc.
As we go over everything again, we remember that we had originally planned on doing TIL therapy as the next option if the Anti-PD1 treatment hadn’t worked. I’m not really sure what happened that made us decide to pursue the other treatment. I don’t know if it even really matters right now. They send us downstairs to do some bloodwork to see if his liver is even in decent enough shape to do the treatment, since there is a large tumor that has been growing at the top of his liver and possibly affecting liver function. We go downstairs. We continue to try to pray. We talk about the treatment. I am starting to feel like God is sending us a sign.
I mean seriously, between being told that we couldn’t do the surgery now and then just minutes later that the Vanderbilt transfer was falling apart? That timing felt more than coincidental to me.
Kevin wasn’t convinced.
Honestly I wasn’t really convinced either. I mean, Kevin and I are not the type of folks who really feel like we see God working in signs and symbols. We don’t usually think that God “gave us” this particular parking spot or whatever. But we also have seen SO many times over the last year the way that things have worked out just too perfectly to be coincidence. Or how it seems God has orchestrated us meeting people at exactly the times that we or they needed us to be connected. We’ve seen it. A lot.
But this all seemed, well too crazy to be coming from God.
I mean seriously, change EVERYthing that we’ve been planning on since before Christmas?
We went back upstairs and waited for the results of the labwork while we continued to discuss the various pros and cons of the treatments, what the hell was happening with Vanderbilt and UCLA, what the fall-out might be for Kevin with time off from work with each treatment, etc. Something we said about work triggered a thought in a lady who was sitting behind us and she turned around to tell us that her husband had just finished the TIL therapy and that he’d finished on a Friday and was back to work on a Monday. Our jaw dropped. She continued to share a little more about the treatment and commiserated with Kevin that her husband had said the IL-2 (what he did last summer) was worse than this. She said he was very tired, but other than that did okay. She said he was downstairs right now on a conference call! Kevin went in to talk with the doctors while I stayed back for a few more minutes to talk with my new friend Jill. The similarities were stunning. Her husband had been Stage 3C and had done surgery, radiation, and interferon. He had recurred right after finishing interferon. He had done IL-2 with no success. His doctors at Johns Hopkins had recommended he connect with the NIH as his next best options for treatment. Jill and Mike have two young children.
I could have cried right there. God just sent us a helicopter.
We went in and signed up for the trial. They scheduled Kevin for a brain MRI this morning and for a process called apheresis, whereby they take out a bunch of his white blood cells in preparation for the TIL therapy in a few weeks. It’s a process similar to donating platelets, but it’s five hours long instead of two. So we will have a long day today.
Our weekend is free, and we will probably spend it resting and maybe, just maybe, try to take in a sight or two in D.C. Then Sunday evening Kevin will be admitted to the hospital. Monday morning, he will have a surgery to remove the two large tumors on his neck. I know he’ll be glad to see those go. We will probably stay at the hospital until Tuesday, and then head back home Tuesday afternoon. They said Kevin should be find to go back to work on Wednesday!
Provided all goes according to plan (ha!) Kevin’s tumors will be dissected and any tumor infiltrating lymphocytes will be removed and duplicated in a lab. These TILs will be used to create an army of super-fighter immune cells. Once the TIL has grown (2-4 weeks) we will receive a call and then head back up to D.C. for a three week inpatient stay. During that time, the doctors will use two forms of chemotherapy to destroy Kevin’s immune system, then infuse his body with the super fighter cells, then follow it up with either IL-12 or Il-2 to boost the immune system to start really attacking the tumors. Then, once he’s well enough to travel safely, we’ll head home.
The treatment will usually start showing results about a month after that, and it works for about 50% of patients.
So, there you have it. Our crazy, insane, story where everything got flipped upside down and inside out but all came back together in exactly the way God wanted it to.