Well, your prayers worked. Kevin has a 101 fever. They are going to start antibiotics in case it’s from an infection (since he is neutropenic) but we are hoping that the fever is caused not by an infection but by his new TIL cells mounting an immune response. Pray for the fever to be stable and not spike super high and for Kevin to be comfortable in the midst. Also please pray for me as I continue to really struggle with energy.
In case you haven’t figured out by now, Kevin and I are big Lebowski fans. For whatever strange reason, we find ourselves wandering back to that odd little 1998 Cohen brothers film. Sure, it’s filled with a stupid amount of foul language and after watching it probably about 30 times, I’m still not quite sure I could tell you the details of the plot. But at the end of the day, it’s damn funny. And damn funny is what we need right now.
Oh my word the past week has been crazy. Really the past year (or two) have been crazy, but that’s beside the point. I’m a little behind on updating, as usual, but it’s because everything just keeps changing so fast! Last time I needed to send out an update, it was write or sleep and sleep won out.
Nearly three weeks ago, Kevin and I made a trip to the NIH for final testing to determine if he would be allowed back onto the clinical trial. Thankfully they had “good” news for us… the tumors had shown progression since he’d come off of vemurafenib four weeks earlier. This was clearly no surprise to us as these tumors appeared on the side of his face, and started bulging out like crazy, in just that short time. Once the doctors told us everything was a “go”, they told us that Dr. Rosenberg, literally the father of modern immunotherapy, wanted to meet with us. The doctors assured us it was nothing bad, just something unusual. We were totally nervous, especially when he came in and started asking questions like, if the vemurafenib was working, why did you come off of it? We very carefully said, “Uh, because your team said I had to be off all cancer drugs for at least thirty days prior to starting treatment?” He continued asking questions along this path and we were starting to really worry we’d somehow screw things up and were about to be tossed to the curb. We discussed our understanding that vemurafenib could, and most likely would, stop working at some time in the future with little warning and that when the cancer came back, it would most likely be too aggressive to be treatable by TIL therapy at that time. Since TIL therapy had long term success rates, unlike the temporary nature of vemurafenib’s success, we wanted to “swing for the fences”. He smiled and agreed with us, saying that line of reasoning made perfect sense and he would do the same thing. I guess maybe some folks don’t think like that? We sort of got the sense that it was unusual for us to make this choice, but he was totally fine with it. I think he just needed to make sure we were really informed in the choices we were making. Whew, one near crisis averted.
So they gave us a start date for chemo of June 1st, and we headed home to get ready to be gone for three weeks. I had already flown the kids out to the west coast (to my cousins’ house) and they were settled in and happy (though I was missing them like CRAZY). I was glad we’d made the choice to bring them out because it would have just been a nightmare and crazy expensive trying to get it all worked out in just ten days on top of everything else. I put out a request here on the blog and an amazing reader covered my friend Lila’s ticket from California to come out and help me clean house and get caught up on the scary scary mountains of paperwork and bills. And just after that another dear reader covered my ticket up to D.C. with Kevin for the last trip and I am forever grateful. It turns out Kevin got really sick the first night and says he wouldn’t have made it without me. Sometimes I think that traveling with him is a bit of a luxury and am hesitant to ask for help, but it always comes at a time when we REALLY need it, so thank you both!
I am so grateful that Lila was able to come out. She and my sister helped me get every corner of the house cleared out and cleaned up and a sweet teenager in the neighborhood who helps me out on occasion came and scrubbed every tub, toilet, and floor to within an inch of its life. On Thursday May 30, Kevin flew up to D.C. to get checked into the hospital. I had an emergency dental work I had to get done, so I spent two hours at the endodontist on Wednesday, then another six in the dentist chair on Thursday! Six hours! Are you kidding me? I was seriously traumatized and never want to go back. Unfortunately, I have two more cracked crowns and two cracked fillings, all attributed to grinding my teeth at night from stress… hmmm, I wonder why?
So anyway, sorry I got off track. Thursday afternoon, Kevin flew to D.C. He made it to the NIH and got settled into his hospital room. We started posting on Facebook etc. his address and room number so folks could send us mail. Sarah and Lila and I finished up every last detail we could think of on the house and stayed up till midnight getting bags packed, snacks prepared, etc. Because we were up so late, we didn’t get the super early start like I’d wanted. We finally headed out on our 11 hour road trip by around 9:30 in the morning. At about 10:30, I got a call from Kevin. The first thing he said was, “Bad news. Turn the car around.” I sighed, slowed the car down, and looped around to head southbound as he explained that while his TIL cells had been doing just great, once they did the IL-12 genetic modification, his cells started fizzling out. Apparently this happens in about 10-15% of cases. Nothing to worry about, they’d try again with another set of cells, and we should come back in ten days.
Ten days?! Kevin had been in tons of pain for several weeks now and was just starting to experience liver tumor related nausea. We weren’t sure if we could wait ten days! Still, we had no choice. He finished telling me the rest of the story and then went down to the travel office to get a flight booked to come home that evening. I hung up and explained everything to an awestruck Sarah and Lila. They both commented multiple times, “I can’t believe you’re so calm!” Yeah, well this isn’t the first time sweetheart!
I was outwardly calm, and I suppose inwardly, at least at that moment. Still, I was awestruck. So many times we had seen everything fall apart to then suddenly fall into place more perfectly than before. I trusted that God had a plan in all this, but I was frankly a little frustrated that I couldn’t see it yet. So we went home, asked our house sitter to hold off a week, and Kevin told his boss he’d be back to work on Monday.
But that changed too. Before anyone had any idea Kevin would be sent home from the NIH, he had a PIC line installed. This is a very standard procedure performed on thousands of cancer patients every day. It should be no big deal right? Well, as it turns out, there was a problem installing Kevin’s. The procedure is to insert a long thin tube through a large vein in his arm which would end up dispersing medicine directly to the heart. Well Kevin’s tube decided to go north (toward his neck) rather than south to his heart. No big deal they tell him, they’ll just pull it out a bit, hold up his arm (for the gravity assist) and try again. Two more times and they got it in the right place, only to find out 10 minutes later, from different doctors, that he would be sent home. Glad they worked so hard on that.
But here’s the rub. Sunday night I noticed Kevin was warm and took his temperature. Yep he had a low-grade fever. Combined with the fact that his nausea had returned, we decided to head off to Emory to get him checked out. Of course the fever was gone by the time we actually saw someone at the hospital, but now Kevin was complaining of pain at the edge of his clavicle. The doctor became more concerned about this, than the fever or nausea we came in for, and was suspicious of a blood clot along the path where the PIC line had been installed. She sent Kevin down to the E.R to get a CT Scan. After waiting an hour for that to take place, the E.R doc comes in and says “We didn’t find anything of concern on Kevin’s clavicle, but what we did find was a blood clot in his lungs” (a.k.a Pulmonary Embolysm).” What?!? We didn’t even come in for that! We came in for fever and nausea! Oh but it gets better. She gets him checked into the hospital and started on a blood thinner called Lovenox. Kevin stayed overnight and I went home to get some sleep. In the morning a different set of doctors came in asking Kevin if he had any shortness of breath or chest pressure. Kevin said no, and that we had actually come in for something else. But were very concerned and asked again “are you sure?”. Kevin was thinking to himself, I have LOTS and LOTS of medical problems, but thank God, breathing problems are not one of them. At this point his doctors started thinking it was a false positive and sent him for a different test to confirm. Sure enough he’s scores 100% on the breathing test and they stop the blood thinners and label the whole event a false positive on the blood clot and sent him home. They were right, no issues developed, and the swelling went away and Kevin went back to work for the rest of the week.
So as of now Kevin is all set to fly up to the NIH Sunday afternoon to give it another go with the second set of cells. It could fail again, or it could work perfectly this time. Well dude, we just don’t know.
So it’s one roller coaster after the next, good news, bad news, good news, bad news. It’s like the story of the the Zen master and the little boy from the movie Charlie Wilson’s War. The version from the movie goes like this… (other variations of the story are referred to as “The Farmer’s Luck)
There’s a little boy and on his 14th birthday he gets a horse…
and everybody in the village says, “how wonderful. The boy got a horse”
And the Zen master says, “we’ll see.”
Two years later, the boy falls off the horse, breaks his leg, and everyone in the village says, “How terrible.”
And the Zen master says, “We’ll see.”
Then, a war breaks out and all the young men have to go off and fight…
except the boy can’t cause his legs all messed up. and everybody in the village says, “How wonderful.”
And the Zen master says, “We’ll see.”
We watch in hope for the Lord… Micah 7:7
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 plvornbrock@gmail.com to work out the details or if you would like to donate money toward travel, you can contact my sister Sarah at mrswjrt4@hotmail.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!
Love,
Rachel
I spent Mother’s Day recovering from a cross-country flight by myself with a two and three year old, and then coming down with pneumonia. So that was awesome. And yet I am reminded of a valuable saying. “Be kind, for everyone you know is fighting a hard battle.”
I haven’t written in nearly three months. It’s just been too painful. A lot has happened and I don’t know if I’ll ever be able to catch up with a full update. So maybe you’ll just have to catch the pieces in drips and drabs. But that’s okay.
As I’m writing this, I’m flying back home to Atlanta. I’m flying away from my babies, one of whom is sick with ear and respiratory infections. Do you have any idea how hard it is to leave a sick baby? Even if you know that she is in wonderful, wonderful hands? Yet, I have a sick husband at home who needs me, and I know that God will sustain me and my children through this next chapter.
Next weekend, Kevin and I will fly up to Washington D.C. and spend my 34th (I think) birthday doing tests to get the final go ahead to re-start the TIL therapy trial. If they say yes, we will fly back to Atlanta on the 21st and then return 1-2 weeks later to begin treatment. This will be the hardest battle yet, and I have to bring my game face. Kevin will have been off the vemurafenib for 30 days by then, and his cancer has already come back on his face. The tumors are causing a lot of pain, but oddly, that’s what we hoped for. The cancer has to show progression in order for him to start the trial, but he still has to have normal liver enzymes. So yeah, we’re pretty much praying for more cancer but not too much. So messed up.
Three months ago, one of my best friends died. She died very suddenly in a tragic way. I was the last person to see her alive. She left behind a five year old and a husband, who is now a widower. He is living my worst nightmare.
Erica lived in my neighborhood, just two streets down, and my kids and I hung out with her and her daughter Bella almost every other day. I am mad at God that she is gone. Hell, I’m mad at Erica for being dead. I’m mad that Bella is motherless and that Pedro is widowed. I’m mad that there is so much pain and suffering in the world, and that it doesn’t have to be this way. It wasn’t supposed to be this way. I want to throw rocks at God.
I haven’t been able to sit through the worship portion of church. I simply cannot sing songs about how great God is and “Oh how He loves us.” It just hurts too much, and I start sobbing and I step out before I create an awkward moment for everyone around me. I don’t cry quiet tears, beautifully streaming down my face. My crying is not sweet or noble. I cry ugly. And my ugly crying is loud and sobbing and snotty. But ugly cries are what I have right now.
And yet, God can take it. I throw rock after rock at Him and say “You suck God! Why does my husband have to have cancer? Why did Bella have to lose her mommy? Why did Curt have to die? Why, why, why? I hate you! I’m so mad at you I don’t know if I could ever love you again! How long will this pain go on?”
And I’m reminded that God really can take it. He gives us reminders all throughout His word that human suffering is a part of this story as much as redemption. The psalmist cries out, “How long, oh Lord, will you hide your face from me?” And Job, by the end finally breaks down and says to God the equivalent of “What the fuck God?!” Yes, I said it. And I mean it. How much more can a person take?
I’ve been to the emergency room twice this year. I currently have pneumonia. Last week my husband had to call the paramedics because I couldn’t breathe during a paralyzing panic attack. In January, I got stuck traveling with a three year old for 18 hours and then continued on to D.C., effectively traveling for 24 hours straight before I could sleep, just days after I’d been diagnosed with a respiratory infection and bruised ribs. I got two flat tires in 24 hours. I left my cell phone in D.C. and had to have it fedexed back, only the “snow” in Atlanta delayed the delivery. My husband almost died from liver failure. I will most likely miss my son’s fourth birthday, and very nearly missed my daughter’s second. I had to have an emergency root canal because I’m grinding my teeth at night and destroying all the dental work in the back of my mouth. I still have two cracked crowns and two cracked fillings to get replaced as well. And I missed the followup appointment to finish the root canal. Twice. My friend mailed me a brand new $650 lens of mine that she was trying to sell for me and the post office opened the package, stole the lens, and re-sealed and delivered the crumpled box. Alas, no insurance because who thinks the post office will steal your stuff?
And I’m pretty sure that’s not the half of what’s happened just since the beginning of this year. Oh yeah, there was that time when I ran out of gas on University Avenue, at the foot of Pittsburgh, one of the top ten most dangerous neighborhoods in America. And then after Kevin rescued me, he inadvertently drove off with the key to my car and my phone and didn’t realize I hadn’t followed him until he got home. That was awesome.
And seriously, there have been so many times that I have been just. so. mad at God. I literally have yelled at Him, “Fix it! Make it all better! Are You the creator of the universe or not? Because if You are who I believe You are, then you CAN FIX THIS! It’s not supposed to be like this! FIX IT!”
And when I wait for a reply, I hear silence. And it hurts so much. And I cry. And I cry and I cry and I cry. But then, right there at the bottom, in the midst of my pain and aching and tears, a knock comes at the door. It is a friend come to watch the kids. Or my neighbor come with a plate of meatballs. Or a girlfriend popping in to help me clean up a little and then sit and have a cup of coffee. And God shows up.
Other times, He shows up in the form of ten kisses from my daughter.
Or daffodils that show up two months early, though the ground is still frozen and barren, as if to say, “New life is coming. Trust me.”
God shows up in the form of a beautiful, perfect baby who was not planned by her mother, but was always planned by our Father in heaven. God shows up by redeeming broken families and placing this precious child in the arms of dear dear friends who had beaten down cancer and who now could not bear children of their own. Bless that baby. That sweet baby got me through the month of March.
God showed up at the baseball game that Kevin was well enough to run off to with me, even though we were three innings late, the kids were ready to leave once they’d eaten all their snacks, and it started to rain. God fed our souls that day.
God showed up in the flight attendant who is also a cancer hospice nurse on the side, and my airplane seat mate whose mother is fighting melanoma right now. He showed up in the woman who helped me get my children, three backpacks, and two car seats off the plane before I burst into tears and then out of the blue asked if she could pray for me. I feel certain I would have had a panic attack during our trip last Saturday had sweet Amanda not followed God’s leading to boldly ask, “Can I pray for you? Right now?”
God showed up in the paramedic who brought me oxygen and calmed my breathing last Thursday who was also a Christian and had grown up with missionary parents in Thailand, saving the lives of precious babies who had survived abortions. The paramedic who, despite the fact that her partner was an atheist and she might very well get in trouble with work, offered to pray for me before heading off to their next call.
God showed up in the bald woman on my flight, with the port bumping through her shirt to remind me, “I know.”
That’s the thing about God. Even in the midst of unspeakable pain, God is with us, and He knows how much it hurts. That’s really what Emmanuel is all about. God with us. Always. No matter how many rocks we throw at him or harsh words we cry out in our suffering, He is there, wrapping His arms around us saying, “I know.
I know, sweet child. I know.
This is not the way it was supposed to be. This is never the way it was supposed to be.
And yet, though it is impossible for you to make sense of right now, I work all things out for good. You will see.
No matter what, I will be with you and you will make it through.
It hurts so much, I know.
It makes no sense, I know.
You are so angry, I know.
And yet I came down and lived with you so I can say to you now, I know. I know, my child, I know.
***********************************************************
Though I have not had any panic attacks for the past few days, for the week and a half prior, I’d been suffering panic attacks of increasing duration, intensity, and frequency that culminated in the 911 call. It has been incredibly exhausting, scary, and frankly, embarrassing. But I know that there are many people who struggle with anxiety on a regular basis, and my heart breaks for them now. I have never struggled with anxiety before, at least nothing like this. In my reading about what panic attacks are and what they do to your body, I found peace in explanation of the extreme fatigue that they cause to a person. The fatigue I was experiencing after the first few were frankly feeding into my increasing anxiety because I was getting to a point where I couldn’t function and was even more fearful of that fact. Once I understood that the fatigue came from the attacks, I could rest and receive the peace and sleep that my body so desperately needed. Another thing that I came across again and again as a way to treat panic attacks and anxiety is to write. To write about anything and everything that comes into my head. And perhaps, since I took such a long break from sharing on this blog, that may be one of the reasons things have gotten so bottled up to this point. So I will try to write more though it may often be for no one but myself. I like writing on a blog though instead of just a private journal for whatever reason. So that’s what I will continue to do. Please don’t be offended if I use a word that is troubling or suggest an idea that might challenge theology. I am so often comforted by the stories of great theologians who went through intense periods of darkness, doubts and questioning. Again, I am reminded that God, who is ever unchanging, can take whatever crap I throw out at him. And so dear friends, thank you for having me back. Please do keep in touch as I will try to do as well. I have missed sharing with you all and will need each and every one of you for the next chapter in our journey.
I’ve been thinking about where Kevin and I “should” have been right now. Kevin should have been a week into his TIL therapy treatment in Washington D.C. This was to be a huge battle, the biggest yet. It was to involve chemotherapy, IL-12, and various other forms of torture intended to give him his best shot at a total cure. We were geared up for battle. We had the house cleaned out, de-germed and ready. We had plans for the kids. We had winter coats for the icy D.C. weather, for goodness sake.
As for me, I’d given a lot of thought about how this next chapter of the story was going to be told. After the craziness of plan E falling apart and plan F coming together in supernatural signs and messages from God, I felt pretty proud that we’d been trusting Him and we were really going to glorify Him in this next treatment. Pretty silly, huh?
We were going to be in the hospital for Valentine’s day. I was going to do something amazing, maybe some tear-jerking craft off of pinterest, and it was going to be a beautiful, inspirational little story. We were going to go through the forty days of lent with a hellish treatment and recovery and would be receiving his first set of scans around Easter. What an amazing story to tell that was going to be! We were literally going to walk through the desert for forty days and then celebrate Christ’s resurection with an amazing announcement of clear scans. I was just sure of it! It was going to be the kind of story that people would forward on Facebook and people would cry over a video montage about it, for how inspiring it was going to be.
I couldn’t have come up with such a beautiful story myself. I was so amazed and grateful and frankly, a little excited that this was what God had planned for us. Here we had waited and trusted and fought for so long. And now THIS was the way He was going to heal him. It was going to be hard, but boy was God going to be glorified. And we were going to get to be a part of that. Because we’d trusted Him. Heck, Kevin was even going to lose his hair from chemo and finally look like a “real” cancer patient. I’d definitely need to get some beautiful, touching photos of that. It was just going to be so inspirational.
Instead, I am sitting on the porch waiting for a bottle of pills to arrive on a UPS truck.
Somehow, we’re not feeling quite as inspired about plan G.
Is it the lack of drama? Heck no, we’ve had more than enough drama to last us a lifetime. Two weeks ago, when Kevin’s liver started shutting down and we truly thought he was going to die in the next couple of weeks, I think I would have given anything to be handed a bottle of magic pills that would make him better, even if I knew it would be temporary. But now that it’s what we’re getting, we’re struggling to even really believe in these magic pills. It’s hard to have hope in a bottle. Especially when you already know how the story goes… phenomenal success turns into devastating recurrence.
We had wanted to go visit one of Kevin’s childhood friends who lives in Sacramento while we’re in the (sort of) nearby area. The plan was to leave as soon as his medicine showed up. I’ve been packed and ready since 8AM when the UPS tracking said the package was out for delivery.
It’s 6PM and we’re still here. I suppose it’s just as well since Kevin seems to have gotten a cold and is taking another nap while I watch the door like a hawk.
I’d been sitting around all morning out on the front porch or chasing a small pocket of sun to stay warm. I wish I could have taken a walk today, but didn’t want to risk missing the package delivery since it requires a signature. As I’ve sat out here for most of the day, alternating between reading good for me stuff like devotionals for lent and putzing around on Facebook and mommy blogs, I started thinking about what lent might really mean for me. I’d thought that we’d have this dramatic and beautiful picture of walking through the desert for forty days. I pictured moments of solitude in prayer and with a “quiet and gentle spirit” giving up something really important for lent.
Instead, we have endured whirlwinds of travel, hospitals, doctor’s visits, scans, blood draws, more scans, more blood draws, and finally, a short blip of peace for this week where we have run away. I don’t want to go back home. I don’t want to embrace this next season that is so different than I had envisioned. I’d pictured new life and redemption.
Instead we have… what? There is something. Something to hope for, but we don’t know exactly what it is just yet.
I don’t want to give anything up for lent. I just want to give up. That’s it! I give up! And so I think about this idea a little more, instead of giving up just one thing, what if I really could just give up? What if I could give up the whole idea of everything I’ve been holding in my mind? Everything I’ve been trying to push and squeeze into some beautiful vision, purpose, plan. What if I could just give up on everything?
I bet the disciples wanted to give up. After years of following Jesus, seeing things really heat up with all these cool miracles and raising people from the dead and stuff, when things really got crazy and Jesus got arrested and crucified, I bet they just wanted to give up. I bet they thought about how perfect it was all going to be… this amazing man, the Messiah, God with us, who was going to reign as king and you know, kick out the Romans and stuff. It was going to be so awesome. Until it wasn’t.
I remember that moment, sitting next to Kevin in the infusion center, when we realized that all of our own plans were falling apart. All of our dreams that we’d hung on this treatment, this treatment that we’d SO believed had been divinely led, when it all just went to crap. I wonder if that’s just a tiny bit of what the disciples and Jesus’ other followers were thinking? Kind of a great big, “WTF man?” Sorry, yes I just abbreviated a cuss word in a blog about faith. I know I was certainly pretty pissed at God. And I absolutely believe I would have been just like Peter denying Christ to someone who didn’t even matter because I was so disillusioned.
I. give. up.
I give up this idea that God’s got it all under control. I give up this idea that God’s got some perfect plan laid out. I give up this idea that I’m going to always trust Him and follow Him perfectly and glorify Him in these beautiful and inspiring ways. Thankfully, even though I’m such a screw up with this whole perfect faith and being willing to trust part, Jesus still tells me to come.
Matthew 11: 28-30:
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”
All I have to do is come to him, and then I can give it all up. Thank God.
Hi friends,
So here’s what’s happened in the past few days. Last weekend Kevin started to feel much sicker, and the change seemed rather sudden. He felt tired and needed to rest most of the day and also felt nauseous, although he wasn’t throwing up a lot. By Monday he was so worn out that he decided to call in sick from work. By mid-day I put my foot down and told him I wanted to take him into the infusion center for fluids, hoping that that would at least help some. We called our doctors and they said to come in right away and that they wanted him to have some blood drawn for labs before starting his infusions. We got a babysitter and headed out, all the while praying that we would get a call SOON from the NIH saying his TIL was ready, because we were sensing that we were running out of time. And just ten minutes later, while we were driving to Emory, we got the call! TIL had grown and he was going to check in the next week to start his treatment. I offered huge praises of thanks and relief, trusting that NOW everything would be okay.
Once we got his labs done, I got Kevin settled into his favorite vinyl lazy-boy, covered with a heated blanket. They got his IV going and started him up on fluids and worked on orders to get him some nausea medications as well. About 20 minutes later, our nurse from oncology came downstairs to speak with us. She said that Kevin’s liver numbers were NOT good. In fact, they were about five times what they should have been. This was a very bad thing, and so she said to hang tight until we figured out what to do about it. We called our NIH doctors to inform them and ask what they wanted us to do. After looking over the numbers, they sadly informed us that he would no longer qualify to do the trial. And they also offered no advice on what to do next, since they no considered him no longer their patient. Without knowing what was going on next, we finished up fluids, prayed, called friends, and then finally headed home. Our Emory team called and asked him to come in the next morning for more labs for comparison and also said that they’d be scheduling scans for as soon as possible this week to find out more of what was going on.
That night Kevin spiked a 101 fever and it continued throughout the night, finally coming down to about 100 degrees. This may or may not be related to his liver function. The next morning we went in again for more labs. We brought the kids this time, thinking that it would be a quick, non-scary way for Jude especially to conceptualize what was going on. It was a little tiring lugging two kids into the clinic and making them wash their hands ten thousand time and trying to keep them from spreading germs all over the furniture, but it was worth it. The guy doing Kevin’s blood draw invited Jude in to “help” him with his Daddy. Jude watched and helped pick out Daddy’s armband and the tech explained everything that was going on to Jude. Then we packed everybody up and headed back home. We fed the kids lunch and put them down for an early nap, because we were so worn out from exhaustion, sickness, and the emotional roller coaster we were on.
Right after we’d gotten the kids down, Emory called. Our nurse said that Kevin’s levels had continued to rise substantially and that they would like him to come back right now if possible to do a hepatitis screen. We all knew that hepatitis was extremely unlikely, but it had to be ruled out as quickly as possible. Since Kevin is sometimes overwhelmed with waves of nausea out of the blue, we knew it wasn’t a good idea for him to go by himself. A quick post to our neighborhood’s Facebook group and within minutes we had someone to drive Kevin back over while I stayed home with the kids.
Today we are having scans conducted all day, three sets! And of course our insurance wouldn’t authorize them, seeing as there was less than a three day turnaround for the order. So of course we had to sign a waiver saying that yes, we would pay the twenty some thousand dollars that all the scans would cost if insurance didn’t pay. So we know that will be a fun battle with insurance coming up. We also had an appointment scheduled with Dr. Carlson, our surgical oncologist to see if liver surgery was an option. And in the midst of all this, Kevin was called and asked to another set of labs and I was busy getting CDs of all of the scans so I could fedex them to UCLA for a second opinion on how next to proceed. It’s been a wild day and we’re exhausted, still waiting for answers. Will keep you posted.
Hi friends, So Kevin and I finally made it home. Amazingly, Kevin’s surgery went great, he had a perfect recovery in the hospital, and I managed to get a ticket on the same flight back as him just 24 hours later for only $122. We got in Tuesday evening around 6:30, our friends fed us an awesome stir-fry dinner, we passed out in our bed, and then Kevin got up and went to work the next day. I call that a miracle.
The kids are at my sister’s house for a couple days while I try to get a TON of stuff done including editing about 20 photo sessions from shoots I did at my church’s preschool back in Los Angeles, dealing with ANOTHER flat tire on our car (seriously, what is THAT about?!), and trying to make plans and coordinate care for the next phase of Kevin’s treatment.
In a nutshell, we are in the “eye” of the storm, and will head back up to D.C. for the super-intense three week inpatient phase in anywhere from 2-4 weeks.
In the meantime, I am trying to pick up the pieces from traveling for four weeks straight and all of the “house mess” fall-out that comes with the combination of that and having lived in “survival” mode pretty much ever since we moved into our house a little over a year ago. I don’t know if everyone knows this, but Kevin was diagnosed with cancer just two weeks after we closed on our house. He had his first surgery five days after we moved in. And oh yeah, we had two kids in diapers, Evie had a hundred and four temperature for three days over moving weekend, and our new (super old, but new to us) minivan we’d just purchased lost its transmission three days after we’d bought it. Ah, the good old days.
Anyway, I’m telling you all this to make you feel sorry for me and be willing to come help me on Saturday. I’m totally serious! For all you women out there who know how much a crazy, messy, dis-organized house can make a person fall into depression and can make it feel like everything else around her is falling apart, I don’t need to say anymore. I think you’ll do your best to come lend a hand. For the rest of you, just trust me when I say, I seriously need all hands on deck for me to keep keeping it together and taking care of all the things I have to to keep this family sane and relatively healthy in the midst of this crazy storm.
So here’s what I’m proposing… This Saturday, I’m throwing a “Hill Family Spring Cleaning Work Day”. I spent an hour this morning trying to break down all the crap that needs to be done to get this house back in order and wrote the tasks down on little index cards. I have a wall of index cards with a range of things that anyone with a few hours to spare on Saturday can come down and help with.
I need help getting things cleaned up and unpacked from traveling, but also help sorting and organizing paper to get medical bills and important paperwork under control. We need hands to wash and fold laundry. We need help organizing the freezer so when we come back I can just grab and heat up food easily. We need folks to blow or rake the blanket of leaves in the front and back yards so we don’t end up with a rat infiltration. We need folks who can change batteries in smoke detectors and change air filters. We need help cleaning out and vacumming the cars that haven’t been cleaned in oh, I really don’t want to think about it.
As hard as everything’s been so far, I just know it’s only going to get harder. On top of that, when Kevin comes home from the next phase of treatment, he will be coming home with a brand new immune system (a super fighter, grown in a lab, spiderman-style immune system) but a young one nonetheless, and he will be susceptible to infection. So I need the house to be super clean, linens washed, and air vents and ceiling fans vacuumed.
None of this stuff is very hard, and like I said, I’ve done my best to break everything down so that if I can get a BUNCH of you to descend on the house on Saturday, you can just take a card and get started and we can whip the house into shape and have at least that one thing ready for whatever happens next. Many hands make light work, so I’m asking any and all of you who are local to go to our Hill Family Fighters Facebook page and sign up for the event and come on down on Saturday to lend us a few hours and help me batten down the hatches and get the house ready for whatever comes next.
There are lot’s of tasks that can be done even if you have kids along with you, if they have a willing heart for helping out. There’s everything from emptying waste-baskets to using the hand vac to vacuum out the van. My kids won’t be there, but if you have super young ones and you want to bring them and have them play in the playroom while you help in whatever way you can, that’s cool too. Seriously, anybody who can help for any amount of time would be SO greatly appreciated.
Like I said, there’s a variety of tasks I’ve broken down, including a few handy-man type things. Seriously, we’ve been in survival mode since we moved in, and Kevin’s pretty much been too sick to do a whole lot and whatever energy he HAS had has gone into keeping up on his job. Bless that man, I am so proud of him for pushing through and that he is still working right now. For those who don’t know, other than the part-time photography work I’ve just started, I am a full-time stay at home mom at the moment (and full time learning everything about managing cancer adventures too job!) so I don’t have an income to speak of. The fact that Kevin’s worked so hard to continue working is the reason we are still financially solvent right now. But that has left him with little to no energy left for much else, and so again, that’s why I’m asking for your help with this sort of random assortment of spring cleaning, organizing, and handy-man tasks. Heck, our Christmas tree is still up! Seriously, help us not to be THOSE people!
Please come out Saturday morning to 746 Pearce St SW Atlanta GA 30310 from 9AM until 5PM to help for an hour or two or more. We will have krispy kreme donuts, bagels and cream cheese, and lot’s of fresh coffee for breakfast. We will order pizza at noon, and anybody who has stuck it out till dinner, we’ll have a tasty casserole. If you have any of the following equipment, please bring it along if you are able (be sure to mark it with your name so it doesn’t get mixed up). We could use: leaf blowers (with extension cord), rakes, vacuum cleaners, wheel barrows, painter’s ladders.
I have a friend who has graciously agreed to pay for a cleaning service to come in next week and do deep cleaning (bathrooms, floors, etc.) so it really will be more of the picking up, gathering stuff, folding laundry type variety of cleaning. Like I said, whatever and for however long you can offer to help, I will be so eternally grateful. There are a million things I still have to do and figure out before the next phase of treatment starts, and if I can have this big thing under control, it will be one huge step closer to being able to get ready.
Also, for those of you who are not local, I’m working on a few ways that you can help if you want to get involved. Be on the lookout for an updated how you can help page, and the most important thing right now is to just keep on praying.
Here are our specific prayer request for the time being:
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.
What?
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.