Oh, it finally feels like Easter is here! First, the really good news, then an explanation.
Kevin is back on the TIL therapy trial! He checks in in a little less than ten days (evening of May 30) and the actual treatment will begin June 1st. This is just under one year from when we found out he’d recurred. I cannot even begin to tell you what a wild ride it’s been, and also what a wild ride we are up for next. I can only say right now that we are overjoyed and so incredibly grateful that our hope has been restored. In case it’s been hard to follow on my incredibly incoherent blog, TIL therapy is Kevin’s last best chance at a cure. And it’s a really, really good chance too. The thing is, it’s hell. I mean like, super duper crazy insane hell. Like, it’ll make last year’s IL-2 treatment sound like cake. I’m not kidding.
And we’re totally psyched about it!
Basically, the TIL therapy treatment in general has greater than 50% success rates. The specific variation he’s on, with an infusion of IL-12 modified white blood cells has an even greater success rate, but the data set is so small that you can’t really speak in terms of percents. Regardless, the outlook is good and we feel like we can let ourselves be psyched after Dr. Steven Rosenberg (only the father of modern immunotherapy himself) said he was “really excited about Kevin’s TIL cells. They are showing tons of cancer fighting activity in the lab.”
So let’s get those TILs into Kevin’s body and put them to work knocking out his cancer!
So, why do I say it finally feels like Easter? Well, for one, if you read my last post, you’ll know that I’ve been going through a pretty dark time with a lot of crappy things happening. It’s been a time where I’ve felt pretty alone and also struggled with feeling hopeless. Yes, we were grateful that Kevin’s treatment was working, but we also knew we were only buying time and were worried about our chances of getting back onto this treatment in time. It’s felt kind of like I’ve been stuck in my forty days of wilderness. And now, finally, I can really rejoice that we live as Easter people!
I’m not sure if I mentioned this in my last post or not, but I have not been able to make it through a church service in quite a while. I often can’t even make it through the worship portion, because it’s just hurt too much. Heck, we got the kids all dressed and ready to go, I taught Evie to say “He is risen indeed!” and yet we didn’t even manage to make it to church for Easter Sunday. I can’t remember, either Kevin was sick or I couldn’t stop crying. It all kind of becomes a blur after a while.
Consequently, I also haven’t taken communion in a long time (our church does it every week). This past Sunday was the day that we remember Pentecost, when God sent down the Holy Spirit. It was also the first day I’d taken communion since Erica died. I fell apart again when I realized both of these things, but in a good way. I feel like I’m finally reconnecting with God’s family and also coming out into the sunlight, basking in the comfort of the spirit.
Now don’t get me wrong, things are about to get really really hard. But like I said, I’m ready to bring my game face. I have to. Like Kevin reminded me, there have been many, many times when I have taken care of things that have saved his life and these have been things that he simply wasn’t capable of doing for himself. He reminds me that that’s why we sent the kids away for the summer. So it’s time to get ready.
There’s a lot of things to do, now that we have an actual date and schedule and I’m so glad that I already took the step of faith of sending the kids out to my dear cousin and aunt in California. They are settled and happy and doing just great. I have been mainly focusing on resting myself and trying to get fully recovered from pneumonia. My next task is to get the house cleaned out and cleaned up and ready for us to be gone for a month and then home convalescing with a husband with a brand new baby immune system. I also have to make plans for how I’m going to get to D.C., where I’m going to stay, and how I’m going to most economically live for at least a month away from home. I’m working on all these details, and so far we have lot’s of pieces coming together.
For starters, it looks like I’ll get to stay in the Safra Family Lodge for most of the days of Kevin’s stay, which is right next door to the hospital and a beautiful place (and did I mention free?!) There will be a few days where there is “no room at the inn” so I’ll have to play those by ear and maybe crash in Kevin’s hospital room with an air mattress or something.
I’m planning on driving and bringing my bike so I can easily get around depending on how things go with Kevin (I remember last summer at Emory I drove to starbucks every morning for a breakfast sandwich for Kevin because it was literally the only thing that didn’t make him nauseous. Who knows what it will be here, but I think it will be good to have a car and my bike.
The other thing I need to do is get through all the junk that has piled up in different parts of my house. In the past year and a half of fighting this, literally right after we moved into this house, cleaning and uncluttering have too often fallen by the wayside. I’ve got to get the house germ free before we leave, but before that, I’ve got to get it cleaned out! I’m going to be ruthless with the decrapification, because less stuff is less to clean up, right? I’ve got piles of medical paperwork to sort through and countless loose ends to tie up.
After praying about it and discussing it with Kevin, I believe that the best help I could have right now would be my for very close friend Lila to come fly out from LA and help me with all of this, then help me make the long drive up to D.C., get settled into the Lodge, and then fly back to her own family in LA. Lila really lifts my spirits when she’s around and she pretty singlehandedly helped me get packed and moved out of our apartment in LA, packed and moved out of our rental in Atlanta, and unpacked and settled into our current house, all while I was undergoing intense amounts of craziness. I can think of no person who I would rather have come and help me slog through all this household and paperwork stuff than her, and she’s graciously said she’s willing to give me some of her time to do that.
Unfortunately, since this is all finally happening so fast, I need to book a ticket for her to get out this weekend and then another return ticket to fly back the following weekend. All of you my blog friends have been so generous in helping to meet all of our needs, and I can tell you that every single time, it has been such a HUGE gift and helped us to sustain just a little bit longer and a little bit more.
So I am reaching out to you again. This is the one thing that I think will be the absolutely most helpful to me so that I can be the most help to Kevin as we gear up for the next round. Would any of you be interested in purchasing or using miles for a flight for Lila from the LA area to Atlanta in the next few days and another one flying from the D.C. area to LA at the beginning of June? If this is something you think you can help with, please contact Lila directly at firstname.lastname@example.org to work out the details or if you would like to donate money toward travel, you can contact my sister Sarah at email@example.com as she is handling financial donations.
In addition, for those of you who may be interested in helping out in other ways, I’ll be working on a more precise list in the next few days, but here are some things we could use help with:
a bike rack to borrow for the trip
a bike basket and/or panniers for running errands (I have one of those rack things on the back of my bike for mounting panniers or saddlebags)
a bike lock
an inflatable mattress or inflatable fold out chair for staying in the room (there’s really only a folding chair for me to sit in)
some form of laptop locker for securing valuables to borrow for the trip (I will often be in a shared space)
Grocery Store gift cards to “Giant Food” or “Shoppers Food Warehouse”
Some form of weekly produce box (if any of you know of any good ones online, let me know)
D.C. Metro passes
Trader Joe’s gift cards
Gas cards (for the drive up to D.C… gas costs are calculated to be about $200 each way)
Thank you in advance for ALL of your help, thoughts, prayers, comments, calls, texts, messages. They mean the world to me and have sustained me already through so much. I love you all and it’s so wonderful to back in touch with you all again!