I am horribly behind on updating the blog because I don’t even know where to begin! So many things have happened so fast, but we have gratefully had a few slow days and have been catching our breath and enjoying slowing down so I thought I’d try to share at least a little of what’s been going on.
I don’t know what I’ve shared already, but you may or may not know that two weeks ago Kevin started to have some major liver problems. Because of that, we had a whirlwind week of blood draws, scans, scans, and more scans, and ultimately a hospital admission and an endoscopy to check for blockage in parts of his liver. After all of that, Kevin’s liver numbers miraculously came waaaay down without any real treatment or figuring out exactly why they’d skyrocketed. These numbers are truly miraculous and I believe that it is because of the work of all of you prayer warriors. We literally went from thinking he was going to die in the next week or two (all signs were pointing to his liver shutting down) to a stable, healthy (cancer tumors notwithstanding) liver function.
But after all of that, Kevin still got kicked off of the TIL therapy trial, at least for now. This was the one that was to take us to Washington D.C. for three weeks. We were devastated that even with mostly normal liver numbers the doctors still would not let him back on the trial. But the order of events in the previous week had convinced us that this was not all just coincidence or merely bad luck. We trusted that God was doing something here, although we really didn’t know what. The TIL therapy was our only reasonable chance for a durable, lasting response.
After a few stressful, anxious days of waiting, we finally met last Tuesday with Kevin’s doctor at Emory and agreed upon a new treatment plan. Kevin will start on a drug called Vemurafenib (brand name Zelboraf) It is a targeted gene therapy and he will take it in pill form two times a day. It usually has a very fast response time, unlike ANYthing he’s done to this point, so we will know relatively quickly if it is working. There should also be pretty mild side effects compared to his past treatments, so that is a HUGE blessing. Kevin is just so sick of being sick. The main drawback to this drug is that for most people it tends to not be long lasting. After several months of very good response (tumors just melting away, etc) most people tend to recur and the cancer seems to develop a resistance to the drug. Researchers have a few positive discoveries coming down the pike as far as ways to maybe make it work better and longer, but as of now we have to look at this treatment as merely a stop-gap measure.
We had always thought of vemurafenib as our “last resort”; something that would merely buy Kevin some more time after we’d exhausted all of our other options, so it’s been a hard adjustment to come to terms with the fact that we are doing this now. It’s kind of like trying to be hopeful all the while knowing the other shoe will drop at some point. But we also very firmly believe that God was the one who closed the door on TIL therapy (at least for now) and that this is the clear next option for Kevin. We don’t know why, but we believe it was from God nonetheless. We are trying to trust that He “knows what He’s doing”! We really have no doubts about this being the right path, we’re just struggling with not being very excited about it. But the NIH has told us that once the tumors on his liver had shrunk enough to reduce the burden on his liver, they want him to come and get back on the trial. Again, we are trusting that this is the way that it is meant to be, and continue to be hopeful for a time when Kevin will be cancer free.
We had been planning on bringing the kids to LA for Paul and Lila to watch them once Kevin started his 3 weeks of inpatient treatment in D.C. But Kevin’s new treatment was going to be just pills and not require any kind of hospital admission or infusions or anything. However, after the marathon of the past 18 months and the roller coaster of the past month, and the fact that Kevin had gotten sick enough that he had to stop working, at least for the time being, we felt like we both needed to take some time for rest and recovery. So I looked at all the options I had and orchestrated this crazy trip that involved flying with the kids to LA, dropping them off with Paul and Lila, and then continuing on up to Monterey, CA where Kevin’s Aunt Barbara lives. Amazingly, it all came together in just a day. Kevin was just barely well enough that he felt he could handle the flight, and he really wanted to get away from everything for a short while as well. For my part, I was looking forward to getting a little break from full time care-giving. Aunt B is awesome at cooking for us and just taking care of us so we can really rest.
Also, her house is just a short walk from the beach in Pacific Grove and it is truly a magical place. Her house, her neighborhood, her whole little town are just the perfect place for retreat and quiet solitude. Kevin has lot’s of times throughout the day where he is sick unfortunately, but he also usually has a few hours here and there where he feels pretty good. When he’s sick, we take naps or sit around the house and read. When he has felt well(ish) we have walked down to the beach and sat on the rocks and talked with each other, talked with God, or just sat in silence, listening to the crashing of the waves. It’s an amazing thing to sit and see such strength and power and yet feel so safe and secure and held in God’s arms on the solid rocks at the edge of the ocean.
We accompanied Aunt B to her church yesterday morning. It’s a United Methodist church, and I know I’ve said it before, but I just love liturgical churches and the gift of the church calendar. It was the last Sunday of Epiphany, and a time to celebrate Christ’s transfiguration on the mountaintop. Part-way through the service, the children were brought up for a lesson and song before being dismissed to Sunday school. After a short discussion on what exactly transfiguration means (with illustrations from transformers and butterflies) the entire congregation joined the children in a rowdy singing of “Let Your Little Light Shine”. It’s funny how those simple, precious children’s songs can have such meaning and beauty. I was reminded that Kevin and I can escape to the mountaintop for a time, but when we come down, back to reality, we still have a beautiful opportunity to “let our little light shine”. The light of Christ, the light of HOPE, the light of a future promise… that’s what we can shine with, if only we so desire.
I’ll be honest. I am so tired. Kevin is so tired. Kevin is sick of being sick, sick of fighting so hard for so long, sick of worrying and wondering, sick of not a single treatment working. We are on Plan G people! G! It is honestly extremely difficult to keep hope alive when you have gone through six treatments not working or falling apart. As for myself, I’m tired and weary from the emotional swings and adrenaline rushes, made even more stressful by the constant cries and needs of precious, but oh so draining little children. I am tired of trying to keep my house clean under the destructive hands of a two and three year old. I am tired of not sleeping well. I am tired of the adrenaline pumping last minute trips to the hospital. I am tired of wondering how this whole thing is going to play out. I am tired of holding onto hope. I am tried of letting my little light shine. I am just tired. And frankly, to a certain degree, we just want to give up, we’re that tired.
But in church I was thinking about that word in the song… let.
Let it shine.
Let is a passive verb.
I don’t have to be tired of letting it shine if I don’t want to.
In fact, it really takes no effort at all to let it shine. I can just sit back, rest, and still let God in… let God out… let God shine through me.
Sure, there are so many other things I constantly feel I have to “do”. But letting my light shine isn’t one of them. I get to rest in God’s presence, and like the beautiful stained glass windows in Aunt B’s church, I can just be still and quiet and let God’s light shine right through, creating beautiful reflections of His glory. Or I can be like Aunt B’s stove in the family room, just sitting serenely and quietly while a fire blazes within, shining warmth and light into the room.
And so that is what we are doing right now. We are resting and trusting and watching and waiting and letting. We will stay here for another week, then fly back to Atlanta and recuperate a little more at home while we wait for the medicine to kick in. Lord willing, if Kevin starts to respond quickly to treatment, he will be well enough to return to work in a few weeks. And then, if things get even better, I suppose we will look again at TIL therapy. But that’s weeks away. I can’t even begin to think that far. And luckily, I don’t have to, because God’s already got it figured out.
Thank you all for your patience with updates. I have several drafts I started through these past couple of weeks of drama, but as soon as I was almost finished, some doctor would come in or call or something would happen and everything would change again. I just couldn’t keep up! Now that I’ve had a few days to just sleep as much as I need and nothing laid out in front of me that needs to be tended to, I hope to catch up some on some writing, as I feel the energy. I have so much I want to share!
I am so grateful for every single one of you who reads this blog and who prays for us, comments on our journey, helps with plane tickets, meals, bills, parking (oh Lord, I don’t even want to KNOW how much we’ve spent on parking!) and who have just been there for Kevin and me and the kids. I am so grateful for all of you who have stuck with us this far, who haven’t forgotten about us and let us fade away into the background. Your support- which I believe is God working through His body- your support is what is sustaining us right now, at a time when we just don’t even feel like we can take another step. Your support, both behind the scenes and in front…. like it was said in church yesterday… it is a hand on our shoulder saying, “You are not alone.” Thank you, thank you, from the bottom of our hearts for helping us know we are not alone. Thank you.