This isn’t going to be a very cheery post. In fact, it probably won’t be even inspiring or anything like that at all. It seems we’ve gotten a lot of bad news lately. Last Wednesday, Kevin and I flew up to D.C. for his follow-up appointment and scans to see if the TIL therapy had started working on his cancer cells. He’d been feeling sicker by the day though, so we honestly would have been surprised if it had been good news. Still, we weren’t expecting it to be as bad as it was. Basically, the docs told us that his cancer had progressed and that tumors that they had been measuring had nearly doubled in size since the start of the treatment. They also told us that they think the treatment didn’t work because they’d had to reverse it (you know, to save his life and all) through the steroids and plasma apharesis and cam-path. Pretty much, they did such a good job of destroying all their hard work, that the TIL just weren’t able to get a stranglehold on his cancer cells. And that pretty much meant we were done with the NIH. It was the shortest visit we’d ever had.
We’d sort of been anticipating this news, so we’d met with our local Emory doc just a few days earlier and decided to have Kevin go back on vemurafenib immediately once he was officially off the TIL therapy trial. Kevin literally took his first dose while we were still in the NIH doctors’ office. We are hopeful that he’ll have the same fast response that he did last spring and that it will buy him some more time while we figure out the next steps.
But wait, there’s more! Once we got to the airport and right as we were finding out that our flight was delayed by several hours because of weather and that we’d be probably trying to find a hotel for the night, I got a call from the NIH. They politely asked to speak directly to Kevin, which never happens. After I had our flight stuff figured out and Kevin got off the phone, he told me to sit down and dropped the bombshell. He said that Dr. Ilyas had said that upon a standard second review of his scans, a tiny brain metastasis (tumor) was found. It’s only 2mm in size, but still, a brain met changes everything. Suddenly, there are all kinds of trials that he would no longer qualify for, and we’d also been told that once the melanoma reaches the brain, it is often very aggressive and grows very quickly and becomes EXTREMELY difficult to treat (as if the last two years had been cake!)
So with that lovely piece of news, we slowly made our way back out of the airport and to a hotel, still a long way from home.
As we were riding the hotel shuttle, I tried to pray. But I was hurting so much, and frankly pretty stunned, and just also plain exhausted. And Kevin, don’t even get me started on how he was doing! That man had been pushing himself so hard and was about to pass out from sheer exhaustion.
A poem came to my mind, and I couldn’t quite remember how it started. God bless those iPhones. A quick google search later, I was reading the text of the Robert Frost poem, “Stopping By the Woods on a Snowy Evening.” As soon as I started reading the first line, my memory took over and the verses started tumbling through my head.
Whose woods these are I think I know
His house is in the village though
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep
But I have promises to keep
And miles to go before I sleep
And miles to go before I sleep.
We don’t know what’s going to happen next. Honestly, we never really have. We have sort of a plan. Next week Kevin will likely have a radiation treatment called radio-surgery to try to zap the tumor. It’s a one-time, highly targeted, super intensive treatment. Next Thursday (8/22), the whole family has one-way tickets to LA (I booked the flights on spirit airlines b/c they were cheap, not knowing what I was getting into… pray for us!). We have an appointment on 8/23 with Dr. Ribas at UCLA to discuss a new trial. The trial would require visits to UCLA every two weeks though, so we have no idea how that would work. I will be planning some photo-shoot events while I’m in LA and we will spend some time visiting and connecting with family.
So yeah. I think both Kevin and I would like to just hang out in the woods for a while, giving pause, hiding our heads, or just holding each other tight.
And for a moment, we can.
But this battle is far from over, and we have miles to go before we sleep.