It’s 10PM and I’ve finally slipped away to find a quiet corner to share with all of you about what’s going on. My God, this is so hard to write. I get a big lump in my throat when I think about the kids who are on their way out here to see us. I can hardly breathe when I think about Kevin telling me who he wants to make sure is at his funeral and reminding me about his “If I die” document in Evernote. I can’t believe this is all happening right now. I’ll start right off the bat by saying that this post may not make a lot of sense. I’m too tired to edit or revise or even really try to be cohesive.
I’m sitting in a beautiful courtyard garden just a few hundred feet away from where Kevin is lying in the ICU, hooked up to an apheresis machine, and wondering if we will ever be coming home from this place together as a family. I’m so excited to see the kids, I have missed them more than I could have possibly imagined. But I am terrified for the reason that they are on their way here. I wonder what Paul and Lila told them as the reason for this last minute trip. I wonder what I will tell them when they get here. I know that things may turn around again the other way and there will be no reason to tell them anything other than that we are oh so happy to be seeing them. But I also know I may be teaching them about what death is. And that’s just, God, I don’t know. For now I’m going to stop thinking about that again.
I am amazed that in less than three hours our beloved community of friends and not yet friends have given us enough money to cover four last minute plane tickets, expenses, and heck, even the mortgage next month if things don’t get better. I am completely bowled over by the amazing generosity of you people.
You people. You people who are reading these very words, donating money, have provided countless plane tickets, bought birthday presents for our kids, paid for babysitters, brought us meals, and have covered us minute by minute in prayer. I don’t know how I could ever believe that there WASN’T a God in the midst of such senseless caring.
There is so much senseless suffering in the world. It breaks my heart to see so many people in this hospital who are living through such pain. There is a patient on our floor who was diagnosed with stage four melanoma three days after his wife died of cancer. There is another lady we’ve met at the lodge whose adult daughter has been here for nearly three months, struggling through complications after a bone marrow transplant. The patient’s daughter is two years old, was born at 24 weeks, and has developmental delays and a feeding tube. Grandma has been caring for them both here, while both Grandpa and Father are back home working and drive out here every weekend to be with the family. Kevin met a guy when he was up in January who’d been diagnosed with stage four melanoma just four weeks after he and his wife divorced. They have two small children as well. Suffering. Senseless, endless suffering.
But at the same time, I am seeing so much senseless caring. Why do you guys care about us so much? Why do you love us? Why did you give us all this money to help our little family in under three hours? So many of you have never even met us. And yet you care for us. It too is completely senseless. There are so many people needing care, and you have decided to care for us. That makes no sense. And it is so beautiful. Thank you.
From the bottom of our hearts, thank you.
Kevin’s TIL infusion was on Monday June 17th. Two days after the infusion, he started having fevers, which was “right on schedule” for what they expected with his treatment. His fevers continued, getting higher and more severe over the next several days. By day seven or eight, his fevers reached 105, and things started to get dangerous. Kevin was so sick of the rigors that would happen on the way up and the way down from a fever, but still, things seemed to be under control relatively speaking. On Wednesday June 26, Jude turned four years old. We also heard the first little indicator that something might be wrong. While his fevers seemed to have peaked and he was hopefully turning a corner, his docs mentioned that his liver levels were a little elevated, but that this is normal for the protocol. They said, though, that his levels were a little higher than they usually see. Yesterday morning, my sister Sarah flew in to be with us during what we had hoped would be our last few days here and then to hopefully drive the car back to Atlanta on Sunday or Monday. While she was on the plane, the doctors told us that Kevin’s levels were getting too high and that they’d be needing to do some tests and take some action. After they left the room, I asked the nurse for a copy of his bloodwork, and that’s when I saw the numbers I showed many of you on Facebook the other day.
The numbers on the left are his numbers, and the range on the right is what a normal person would have. The Hs mean high and the double HHs mean stupid high. My jaw kind of dropped when I saw these numbers because when his liver numbers jumped back in January, they were in the hundreds. These are in the thousands. I actually decided not to tell Kevin at first because it wasn’t really helpful to see something like this. I bit my lip and tried to not get too nervous as I waited to hear from the doctors about the next steps.
By late afternoon they had a few hard theories about why this was happening and a plan for getting to the bottom of things. They scheduled a liver biopsy for early Friday morning. Since it involved anesthesia and possible intubation, they told him not to eat after midnight. That wasn’t a problem because he really hadn’t had any appetite for the previous several days, you know, with the 105 fevers and all. When they came in to discuss the plan with Kevin, they were amazed to see him sitting up in bed, two laptops spread in front of him, working away. They said that his numbers had continued to jump, but the fact that he felt well enough to be working was an incredibly good (and surprising) sign. Still, they hadn’t given us much to go on at this point.
Last night I stayed in the room with him again, we had an inattentive night nurse. again. and I didn’t sleep much. again. Oh yeah, and he had more fevers and rigors. again. Pile on the hot blankets, call the nurse for the demerol, strip off the blankets, get the ice packs, lather, rinse, repeat.
I ran over to the lodge in the morning to grab a change of clothes and soak in a hot bath for a few minutes and made it back to the room just in time for him to be wheeled down to radiology for the liver biopsy. By this point we’d been given a little more information about what the liver biopsy hoped to help discover and a little more insight into the immunotherapy team’s thoughts on what is going on.
Basically, they think the elevated liver levels are caused by his TIL working a little too well. If you remember, they took out tumor infiltrating lymphocytes (white blood cells) from inside a tumor on Kevin’s throat last January. They then duplicated them in a lab to 860 million. Then, when he came in a few weeks ago, the chemo destroyed his immune system to make room for them to infuse him with this super targeted immune system. But before they infused those TIL back in, they genetically modified with cells with something called IL-12. That modification made the TIL even more targeted to fight his cancer cells. It also made it so that his immune system would stay “turned on” whenever it saw cancer cells in his body.
So, cut to today. The thought is that the IL-12 just went a little crazy trying to fight cancer in his liver (there are after all a few tumors hanging out in there). It went a little too crazy, like Rambo on a killing spree crazy. They really do believe that this is all being caused by an immune response and so far the data seems to be suggesting this theory is correct. Except for the fact that when patients have this kind of response, it’s never this large of a response.
So basically, it could be evidence of a good thing, that the TIL are working really, really well. The problem, though, is that his liver just can’t handle that level of warfare. This theory will be a little more confirmed after the results of the liver biopsy come back from pathology tomorrow.
But even without that confirmation, they have good reason to believe this is the case. Because it’s happened before. In one other patient, they have seen this kind of response. And unfortunately, things spiraled out of control and she ended up dying. Now, there were a lot of differences between that patient and Kevin. A lot. The biggest two being that there were not one but two genetic modifications made to her cells and that they didn’t figure out what was happening and why until it was too late to reverse things.
They think that they have caught things much sooner. They say that Kevin is doing much better than she was in every possible way. And, the fact that they are only seeing this out of control immune response in his liver and not in other areas of functioning in his body is a good thing. It again is hopefully an indicator that they’ve caught it early. They are not taking any chances. They transferred him to the ICU, and started moving forward with a plan to shut things down as quickly as possible.
ICU Welcome Basket
So in a nutshell. His IL-12 have gone on a joyride and it’s time for the party to end. It’s time to put the kabash on this thing. There are three ways that they are trying to do this. One, give him steroids to give him super human abilities to win the Tour de France AND to make the IL-12 TIL settle down. Two, just try to kill off some of the IL-12 TIL outright with the super secret anti-serum that they happen to keep in a locked filing cabinet in the basement for just such an occasion as this.
I could tell you what’s under that brown bag, but then I’d have to kill you.
And three, try to clean out the IL-12 TIL by just removing his blood and replacing it with some fresh blood. This process is called apheresis, and it’s pretty crazy. I think the machine they use is a flux capacitor, but you know, I’m not a doctor, so don’t call me on that.
The flux capacitor
Anyway, they are very very hopeful. But they are also taking all of this very seriously. If this doesn’t work, and they really have no idea if it will, Kevin could be dead in three days. His liver just won’t be able to handle it. The trajectory of his levels is very very bad. But if it does, then I suppose he’ll be one of those “interesting” cases that gets discussed at medical conferences. Dammit, we hate being interesting.
Apheresis in action
It’s midnight now, and I’m really starting to get loopy, so I’ll try to finish up for now. After realizing how serious things were, we decided it was time to get the kids out here so that if the worst were to happen, they would get to see him. We put out a call to you all on Facebook, and the response still brings tears to my eyes. The kids are getting on a flight tonight with Paul and Lila and will be here in the morning. I’m so incredibly grateful for that. I hope and pray and hope and pray and pray some more that by Sunday things will have turned around and we will have wasted a whole lot of other people’s money to get the kids out here and end up taking them to the national zoo instead of trying to find a pediatric grief counselor.
Man, this is crazy shit that I’m talking about. I still can’t really believe what a wild ride we’re on. I mean, Kevin and I are just normal people. In fact, we lead a pretty boring life, and kinda like it that way. How in the world did he get cancer, then progress to stage four, then we end up at a world class cancer center doing crazy experimental treatments? How did we get to the point where we’re talking about funerals and the kids flying out to maybe say goodbye and crazy crap like that. It’s like we’re in some bad movie of the week: “Skin cancer really is serious… the Kevin and Rachel Hill Story”
I’ve been feeling really weird all day as has Kevin. We’re both in shock, but also the business of him being sent around from one procedure to another keeps you focused on something other than the really scary thoughts. It’s a little quieter now, and they’re letting me break the rules and stay in the ICU after visiting hours (yet another sign that things are pretty serious) and now’s the time we’re both getting a little down as we sit quietly with our thoughts. I’m sure the roller coaster will continue tomorrow, but for now, at least there’s a plan, our kids are on their way out to us, and we are both hoping that sleep will come easily tonight.
Watch and wait and hope
I am reminded once again of the verse which we based our family’s website address on… Micah 7:7. But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me. For now, we watch in hope and wait on our Savior. We ask that you join us in doing the same thing.