It was all going to be so perfect – thoughts on giving up for lent

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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?

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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.

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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.

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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.

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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.

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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.

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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.

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Instead we have… what?  There is something.  Something to hope for, but we don’t know exactly what it is just yet.

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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?

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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.

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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.

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Matthew 11:

“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.

How to let your little light shine and an update on Kevin

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Hi friends,

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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.