This is a hard one to write.

The results of yesterday’s ultrasound showed no blockage in Kevin’s biliary ducts that could be corrected.

The consensus is that his elevated liver levels are caused by tumor burden alone.  The only way to help his liver right now is to reduce the tumor burden.  And the only thing we have left to try to do that is this chemo, which is toxic to his liver.

So you can see our dilemma.

The doctors are going to reduce the dose of the chemo to attempt to find the best compromise between liver toxicity and efficacy in killing off the cancer cells.  Thankfully, this chemo is actually pretty targeted, but it is still a risk.

But right now his levels are elevated to the point that we do not have an option to wait.  These levels are toxic.

One small blessing is that his levels are about the same today as they were yesterday, instead of continuing to spike.  But it’s really too small of a data set to know if they have actually stabilized.

Kevin will receive the chemo sometime this evening.  We will let everyone know when he starts, and anyone who is able, please consider fasting and praying during the time of his infusion.  It will be over the course of about 5 hours.  The liver toxicity could be immediate or could happen over the next couple of days.  We need all of you to stand in the gap for us.

Kevin will most likely remain inpatient until they feel his levels are stable or that the drug did not work and then send us home.  Melanoma is not a very chemo-responsive cancer, so this was already a last ditch attempt.  Now with the added liver issues, we are really just crying and begging and pleading for God to work His miracles.

But we know that God can do it.  A dear friend shared the following verse with us from 1st Corinthians 1:8-10.  I made it into a giant poster that I am plastering on our hospital wall.

We truly believe we are under attack.  From trees falling through our house to car accidents to a million little annoyances that seem intended to wear us down, we feel like Satan is trying to hit us from all sides.  Thank God that we are not trying to fight this ourselves.  We feel completely tucked under the arms of our Heavenly Father who is barreling down toward the touchdown line, a ferocious running back who is defeating all His adversaries.  From our viewpoint as the football, it’s a bumpy and scary ride.  But I truly do still believe that God is carrying us to victory over this.  If you don’t understand this analogy, have a look at this video. Hat tip to Wed McMichael for the link.

Yes, I did just say that Jesus is my running back.  Somebody better go make a t-shirt.

We know that God is bigger than ANYthing that Satan can throw at us and we will continue to “cry out in distress, evening, morning, and noon,” knowing that He will hear us.  Pray, pray, pray.

Hey gang, for those who aren’t on the social bandwagon, we have a benefit concert coming up.  I know, I know, it feels kind of crazy, since it’s just little old Kevin and me and the kids.  But just call it an excuse for a party… we need one badly!  Come on out to Community Grounds Coffee Shop down near our ‘hood and enjoy some great music by Rye the Band.  There will be a suggested donation which will go directly toward our family’s cancer battle expenses and there will be all kinds of fun raffles, silent auctions, baked goodies, etc.

On that note, my sister is still working on the details and would LOVE it if you have something you would like to donate for the silent auction/raffle.  This can be anything from specific items to a gift certificate for your goods or services if you own a business.  Also, she needs baked goods to sell.  If you would like to help out in any of these areas, please send Sarah Thomas a private message on Facebook.  If you have trouble doing that, just shoot me an email at rachel@micah77.org and I’ll forward it on to her.

Even if you don’t have money or stuff to donate, this concert isn’t so much about that.  God has provided through so many of you that for the time being, our finances are on track for the next leg of the journey.  What Kevin and I really want is to see you!  We want to see so many of you in person who we’ve only gotten to know through the inter webs and give you a hug, say thank you, pray with you, cry with you, laugh with you.  So come on down, party with us and see us off good to the next leg of our crazy journey!

If you already knew about the concert, BIG NEWS!  The date has changed to THIS Friday October 18th at 6PM.  All the full details can be found at this link:

https://www.facebook.com/events/411433732294704/

If that doesn’t work right for some reason, go to

https://www.facebook.com/HillFamilyFighters

That’s pretty much home base for everything.  Whenever we post anything, we try to post it there first so that it can be easily shared, and that includes blog posts.  If you like something you read or want to share it with your friends, there should always be an easy little share button next to each post that will let you share about it on your own page.  I am constantly amazed at how all that social media stuff has worked to connect us with so many amazing folks.  And to know that people all over the world are praying for us and lifting us up because of it has just blown our minds at times.  Thank you again people of the interwebs.  You rock!!!

Love,

Rachel

So um… yeah.  Last Monday this happened.

And this.

And this too.

And oh yeah, almost forgot to show you this.

Twelve hours later, Kevin and I had to step onto a plane to fly to LA to try again to find a miracle cure that’s going to save his life.  And our clothing and luggage looked like this.

No biggie.

I know, go ahead and laugh.  I know I did.  But first I cried.  And then my four year old son helped me get a little perspective.

Kevin and I had just decided to head to bed early and deal with packing in the morning.  We were standing in our bedroom when we suddenly heard a gigantic crash.  Kevin thought it was an earthquake.  I smiled for a second and said “We don’t have earthquakes in Atlanta, sweetheart.”  But still, I was confused and trying to figure out what could have fallen to cause that kind of noise.  It literally sounded like every cabinet in our kitchen had perhaps fallen off the wall.  Which I started to think was not too unlikely of a possibility, given the way our life had been going the last few years.

I walked out of our bedroom into the office to see a table upended and six feet of tree limb.. well, you saw the pictures.  Having no idea how this kind of thing affects a house, I envisioned our kids downstairs covered in rubble.  I started calling to them as they started screaming.  Kevin headed down the stairs to keep them from coming up while I screamed at him not to go down the stairs because they might collapse on him.  But he was already gone.

I dialed 911, all the while calling down to Kevin, too scared to take a step, fearing one false move would bring the whole house tumbling around us.  I saw that more tree branches had come through our closet at the top of the stairs and started to really freak out until I finally heard back from Kevin that he had the kids and they were okay.  I gingerly made my way down the stairs, pausing to glance at the surreal state of our closet.  There was literally a giant tree limb that you could have hung a tire swing off of, neatly poking through the wall.

We got downstairs and out front with the kids and then I broke down sobbing, holding the kids tight, which only made them cry harder themselves.  At least Evie did.  Ever like his dad, Jude thought the whole thing was cool and tried to comfort me saying, “Don’t cry mommy, it’s only a tree.”

The fire trucks arrived, neighbors arrived, a special team of people who knew how to see if a house was safe to go back into after a tree falls through it arrived.  Kevin got on the phone with our homeowners’ insurance to open a claim.  I cried some more.  And then I finally started to laugh at the absurdity of the situation.

In case you hadn’t been following very closely, Kevin has stage four cancer.  For two years ya’ll.  When we closed on our house, right before the whole cancer chronicles began, a tree fell through our backyard.  Then the transmission died on the minivan we’d just purchased.  Then we got one flat tire after another.  Then the home renovation and repair contractor experience from hell (did I mention they installed three skylights upside down?)  Kevin’s first surgery was five days after we moved in.

I stopped nursing Evie at 9 months because I just couldn’t keep up with everything else going on and constantly having to hand her off to other family members to care for her for days at a time.  She got a serious urinary tract infection during our moving weekend and I struggled with intense guilt that maybe she wouldn’t have gotten so sick if I had still been able to nurse her.

Kevin had his second surgery right before Christmas.  He had a third bonus surgery the same day.  During nearly seven weeks of radiation, we battled squirrels in our attic who’d gotten in because of one shingle that our contractors had neglected to repair, causing over $1500 worth of damage.  I spent most nights not sleeping worrying about my husband dying or our house burning down when one of those damned squirrels finally found some electrical wire to gnaw through.

The story continues and continues.  There was that one time when I got  two flat tires in 24 hours and that other time when Kevin went into the infusion center for fluids and we ended up finding his liver was shutting down, he might be dying within the week, and that he was no longer eligible for the trial that was his best hope for survival.  And oh yeah, that other time when I got stuck traveling for 13 hours with a three and half year old and then that other time when I left my cell phone in D.C. only to have Fedex not be able to deliver it because of, you know, ice in Atlanta.  And ooh yeah!  Let’s not forget the time his treatment at the NIH was actually working but then tried to kill him and he was given three days to live.

But here’s the thing.  We’ve made it through.  It’s been a hell of a shit storm, and I haven’t even scratched the surface of the crap that’s whacked us over the head in the last two years.  I don’t know why this stuff is happening to us.  I don’t know if God is making it happen, if he’s letting it happen, if it’s satan attacking, or if we’ve just had some really really crappy luck.  I know that it sucks and Kevin and I are both more worn out than we could have ever imagined.  But I also know that it’s nothing really.

I mean, like Jude said, “It’s only a tree.”

We have a hope.  We have a plan.  We have each other.  And we have today.  And I guess that’s all we really need to worry about for now.

Thanks again ya’ll for ALL of your amazing support.  We hope to see many of you at the benefit concert this weekend, and many more when we get settled into our little place in LA for the next couple of months.  We love you all and are SO grateful for each and every one of you.

This isn’t going to be a very cheery post.  In fact, it probably won’t be even inspiring or anything like that at all.  It seems we’ve gotten a lot of bad news lately.  Last Wednesday, Kevin and I flew up to D.C. for his follow-up appointment and scans to see if the TIL therapy had started working on his cancer cells.  He’d been feeling sicker by the day though, so we honestly would have been surprised if it had been good news.  Still, we weren’t expecting it to be as bad as it was.  Basically, the docs told us that his cancer had progressed and that tumors that they had been measuring had nearly doubled in size since the start of the treatment.  They also told us that they think the treatment didn’t work because they’d had to reverse it (you know, to save his life and all) through the steroids and plasma apharesis and cam-path.  Pretty much, they did such a good job of destroying all their hard work, that the TIL just weren’t able to get a stranglehold on his cancer cells.  And that pretty much meant we were done with the NIH.  It was the shortest visit we’d ever had.

We’d sort of been anticipating this news, so we’d met with our local Emory doc just a few days earlier and decided to have Kevin go back on vemurafenib immediately once he was officially off the TIL therapy trial.  Kevin literally took his first dose while we were still in the NIH doctors’ office.  We are hopeful that he’ll have the same fast response that he did last spring and that it will buy him some more time while we figure out the next steps.

But wait, there’s more!  Once we got to the airport and right as we were finding out that our flight was delayed by several hours because of weather and that we’d be probably trying to find a hotel for the night, I got a call from the NIH.  They politely asked to speak directly to Kevin, which never happens.  After I had our flight stuff figured out and Kevin got off the phone, he told me to sit down and dropped the bombshell.  He said that Dr. Ilyas had said that upon a standard second review of his scans, a tiny brain metastasis (tumor) was found.  It’s only 2mm in size, but still, a brain met changes everything.  Suddenly, there are all kinds of trials that he would no longer qualify for, and we’d also been told that once the melanoma reaches the brain, it is often very aggressive and grows very quickly and becomes EXTREMELY difficult to treat (as if the last two years had been cake!)

So with that lovely piece of news, we slowly made our way back out of the airport and to a hotel, still a long way from home.

As we were riding the hotel shuttle, I tried to pray.  But I was hurting so much, and frankly pretty stunned, and just also plain exhausted.  And Kevin, don’t even get me started on how he was doing!  That man had been pushing himself so hard and was about to pass out from sheer exhaustion.

A poem came to my mind, and I couldn’t quite remember how it started.  God bless those iPhones.  A quick google search later, I was reading the text of the Robert Frost poem, “Stopping By the Woods on a Snowy Evening.”  As soon as I started reading the first line, my memory took over and the verses started tumbling through my head.

Whose woods these are I think I know

His house is in the village though

He will not see me stopping here

To watch his woods fill up with snow.

My little horse must think it queer

To stop without a farmhouse near

Between the woods and frozen lake

The darkest evening of the year.

He gives his harness bells a shake

To ask if there is some mistake

The only other sound’s the sweep

Of easy wind and downy flake.

The woods are lovely, dark and deep

But I have promises to keep

And miles to go before I sleep

And miles to go before I sleep.

We don’t know what’s going to happen next.  Honestly, we never really have.  We have sort of a plan.  Next week Kevin will likely have a radiation treatment called radio-surgery to try to zap the tumor.  It’s a one-time, highly targeted, super intensive treatment.  Next Thursday (8/22), the whole family has one-way tickets to LA (I booked the flights on spirit airlines b/c they were cheap, not knowing what I was getting into… pray for us!).  We have an appointment on 8/23 with Dr. Ribas at UCLA to discuss a new trial.  The trial would require visits to UCLA every two weeks though, so we have no idea how that would work.  I will be planning some photo-shoot events while I’m in LA and we will spend some time visiting and connecting with family.

So yeah.  I think both Kevin and I would like to just hang out in the woods for a while, giving pause, hiding our heads, or just holding each other tight.

And for a moment, we can.

But this battle is far from over, and we have miles to go before we sleep.

I can’t believe it’s taken me this long to find time to sit down and write a real post again!  But I’ll be honest with you, with the kids back and all the business of hospital life and family coming and going, if I’ve had a minute to breathe, I was sleeping!  For those of you following Facebook (www.facebook.com/hillfamilyfighters) you already know that on Friday June 28, Kevin was moved to the ICU and given about three days to live if his liver didn’t recover.  After a week in the ICU and the Lord working many, many miracles, Kevin was stepped back down to 3 Northwest.  Oh, I’ve never been so glad to get back into that hospital room!  And to think, just a little over a week earlier, I was sobbing in that room, wanting to go home, wanting to have our kids back, wanting everything to just be “all better.”  Well, God ALWAYS answers prayers, even if it’s not the way we think they would be.

Warning:  I use the F word and the S word in this post.  I use it not in vain, but to make a point.  I hope you won’t be offended, but if you think you will, you might want to pass on this post.

I find it so hard to write in the ICU.  There are constant beeps and buzzing and the intermittent sound of the oxygen tanks starting up (which Kevin refers to as the “launch sequence”).  For as much as it’s hard to write, it’s even harder for Kevin to sleep.  We thought the interruptions on his regular floor were bad, but they are nothing compared to the ICU.  For one thing, he doesn’t have a regular door.  It’s a glass sliding door, so all the light and distractions from right outside his room are constantly spilling in.

Then, every time the door slides open, even if it’s relatively quiet in his room, the noise from everyone else’s machines keeps us in a feeling of anxiety.  So I have slipped out for a few moments to try to write something coherent.  I found a beautiful little sitting area bathed in sunlight.  A gift.

Today marks seven days that Kevin has been in the ICU.  Even though God has granted us mercy by saving his life last weekend, we are constantly reminded that things are still VERY serious.  Every day since Monday, there has been talk of him stepping down from the ICU.  And every day something has happened to make the decision for him to remain.  Even if he’s feeling relatively well and was finally able to dress and get out of bed yesterday, the fact alone that he is still in the ICU means that things are critical.  It’s been hard to wrap our minds around that.

Even when they told us last Friday how serious things were, and that if the interventions didn’t work he’d be gone in three days, he felt fine.  Well, as fine as you can feel after you’ve had your entire immune system destroyed, a new one infused and carefully grown, and then the new one tries to kill you.  But still, he was sitting up, working on his laptop, able to walk around some.  It was hard to understand where we stood with things.

After the drama with our nurse on Monday and Tuesday, both Kevin and I were pretty well on edge.  And on Wednesday, we both had our long overdue meltdowns.  I got to have mine in the morning and he waited until the evening to lose it.  We both cried and cried into each other’s arms.  We have both been so scared, and also so overwhelmed with where we are.  The biggest thing that has hit us both though, has been, why hasn’t it been worse?  I see folks in every room of the ICU except his who are hooked up to breathing tubes, feeding tubes, lying semi-conscious, looking like they are at death’s door.  And in some sense, they are.  And it’s a terrifying thought for Kevin that he might ever get to that state of helplessness.  But as we cried and talked, we were both so convicted about how selfish we have been.

As we cry out, “God, why us?”  the true cry should be, “God why not us?  Why isn’t it even worse?  Why have we been so well cared for?  Why is Kevin NOT hooked up to a million tubes instead of just a few thousand?  Why were we granted mercy and another day?  And another?  And another?  And another?”  In fact, as we broke down and God melted our hearts, we were so incredibly convicted of the truth that maybe we’d understood, but never really submitted to.

We are sinners.

 We have heard people say to us, “Your faith is so strong.  You guys are amazing.  You are such a great caregiver.  You are such a strong fighter.  etc. etc. etc..”   And after a while, we started to believe it.  Without even realizing it, in the midst of our gratitude, we started to feel a sense of entitlement.  Yes, we thought, we do deserve for Kevin to be healed.  Yes, we do deserve for the church body to rise up and care for us through meals, money, gift cards, time, prayers, etc.  And without even knowing it was happening, we became selfish.  Or really, we already were.

We both praised and thanked God again and again for saving Kevin’s life last weekend.  But by Monday, we were grumbling about being stuck in the ICU.  Kevin was grumbling about wanting to get back to his Tempur-Pedic bed on 3NW.  I was grumbling about his nurse, my sister, my back, my iPad.

How quickly we can forget God’s mercies.

That night, after having more than a few good ole cries, we dropped to our knees as best as one can in the ICU, held hands, and asked God to forgive us.  We thanked God for His mercies.  We thanked God for His many blessings He has bestowed upon us.  We thanked Him for sending Jesus to take our place, because we knew, we just knew, that however real this felt in that moment, we’d sin again.  We needed Jesus now more than ever.  Because sinning seems to be what we humans do best.  Or in less elegant words.  We fuck up.  a lot.

Forgive my language, but I feel it’s important.  The word sin has been used in so many ways as to almost lose its meaning at times.  I think the reality is that, in the words of a favorite movie of ours, “I think we might be fuck-ups.”  And somehow we never fully realized it before now.

That’s the thing.  A fuck-up doesn’t intend to be.  It’s not really on purpose.  It’s just that he screws things up again and again and again.

And it’s so incredibly convicting when you realize that you’re not this awesome person deserving of the blessings of God, but instead, a royal fuck-up.

But then, and this is the good part, we remember that God LOVES the fuck-ups.  When He sent His son to earth, Jesus didn’t hang out with the super spiritual people, He hung out with the losers… the ones who could never quite get it right.

His closest friends were fuck-ups.  Time and time again, Jesus would show them a miracle, and have to say to them, “Don’t you see?  Seriously?!  You don’t get it?”  And after seeing miracle after miracle and literally walking in the presence of God, those same friends were the ones who ran away scared when the proverbial shit hit the fan.

We truly thought Kevin was going to die last weekend.  We knew he might not, but also understood it would probably take a miracle.  And then God gave us miracle after miracle after miracle!  But amazingly by Monday we’d managed to forget and run away scared, just like the disciples.

There was a Catholic Chaplain intern who came in a few weeks ago and sat with me and let me pick his brain for a bit on prayer.

One of the simplest prayers he shared with me, for those moments when you don’t know what else to say, is this:

Lord have mercy on me, a sinner

As I heard it, my pride even then didn’t like the idea of that prayer.  Yet now I understand.  And now I pray, we both pray, and we know we will need to pray again, and again, and again, and again:

Lord have mercy on me, a sinner

We have a 90% chance Kevin will be leaving the ICU today!  We are overjoyed to get back to his other room, the one that only a week ago I was desperate to go home from.  We will probably be there for a loooong time.  Lord, have mercy on us.  Grant us patience today and tomorrow and the next day.  Grant us graciousness to stay in 3NW as long as it takes for Kevin to recover.  Grant us joy and remind us of the miracles you have worked in our life.  Thank you for giving us another day today.  And when we forget, and begin to grumble,

Lord, have mercy on us, poor sinners.

Lord, THANK YOU for having mercy on us, poor sinners.

Rachel here: I keep trying to find a minute to write a real post but this will have to do for now. Yesterday was a very rough day for me because of an issue we had with an ICU nurse. In the end, I opted to stay away during the rest of her shift. Kevin’s docs are working on a resolution and my biggest concern, that things she said to them which were untrue do not affect my equity with Kevin’s team. I need them to know that if I come running it’s a big deal and that I know when it’s an emergency and when it’s not. Anyway, it has really hurt my heart a lot to have experienced this issue and especially since, after a lot of prayer, I feel God has told me that there will be no way to resolve this with her directly, and so for now I pray that we will be given different nurses for the rest of his ICU stay and that he will get out of ICU soon!

Please pray for my heart as it is very wounded right now. And also please pray for nurse T, as things are never black and white and I know this has troubled her too. I am reminded of a saying, “Be kind, for everyone you meet is fighting a hard battle.”

I would also like to simply reach out and thank you all again for your support and specifically financial donations. We are starting to hear rumblings that Kevin won’t be going anywhere any time soon and so it would give us much peace to be able to batten down the hatches with a little bit of extra padding financially.

If you feel so led, we would be grateful for anything that could help cover the bills next month. Or if you would like to help out with paying a specific bill, please reach out to Sarah Thomas to coordinate that.

When we are ready to come home (soon! Please Lord let it be soon!) we could use some help with meals, gas cards for the drive back, and grocery store cards, but for now the most pressing need coming up will be financial.

Please do not feel burdened to give. We are ok for now but God has taught me so much about being humble in making our needs known and so I am following obediently in an effort to stay on top of our finances for the time being. Thank you again.

Love,
Rachel

It’s 10PM and I’ve finally slipped away to find a quiet corner to share with all of you about what’s going on.  My God, this is so hard to write.  I get a big lump in my throat when I think about the kids who are on their way out here to see us.  I can hardly breathe when I think about Kevin telling me who he wants to make sure is at his funeral and reminding me about his “If I die” document in Evernote.  I can’t believe this is all happening right now.  I’ll start right off the bat by saying that this post may not make a lot of sense.  I’m too tired to edit or revise or even really try to be cohesive.

I’m sitting in a beautiful courtyard garden just a few hundred feet away from where Kevin is lying in the ICU, hooked up to an apheresis machine, and wondering if we will ever be coming home from this place together as a family.  I’m so excited to see the kids, I have missed them more than I could have possibly imagined.  But I am terrified for the reason that they are on their way here.  I wonder what Paul and Lila told them as the reason for this last minute trip.  I wonder what I will tell them when they get here.  I know that things may turn around again the other way and there will be no reason to tell them anything other than that we are oh so happy to be seeing them.  But I also know I may be teaching them about what death is.  And that’s just, God, I don’t know.  For now I’m going to stop thinking about that again.

I am amazed that in less than three hours our beloved community of friends and not yet friends have given us enough money to cover four last minute plane tickets, expenses, and heck, even the mortgage next month if things don’t get better.  I am completely bowled over by the amazing generosity of you people.

You people.  You people who are reading these very words, donating money, have provided countless plane tickets, bought birthday presents for our kids, paid for babysitters, brought us meals, and have covered us minute by minute in prayer.  I don’t know how I could ever believe that there WASN’T a God in the midst of such senseless caring.

There is so much senseless suffering in the world.  It breaks my heart to see so many people in this hospital who are living through such pain.  There is a patient on our floor who was diagnosed with stage four melanoma three days after his wife died of cancer.  There is another lady we’ve met at the lodge whose adult daughter has been here for nearly three months, struggling through complications after a bone marrow transplant.  The patient’s daughter is two years old, was born at 24 weeks, and has developmental delays and a feeding tube.  Grandma has been caring for them both here, while both Grandpa and Father are back home working and drive out here every weekend to be with the family.  Kevin met a guy when he was up in January who’d been diagnosed with stage four melanoma just four weeks after he and his wife divorced.  They have two small children as well.  Suffering.  Senseless, endless suffering.

But at the same time, I am seeing so much senseless caring.  Why do you guys care about us so much?  Why do you love us?  Why did you give us all this money to help our little family in under three hours?  So many of you have never even met us.  And yet you care for us.  It too is completely senseless.  There are so many people needing care, and you have decided to care for us.  That makes no sense.  And it is so beautiful.  Thank you.

From the bottom of our hearts, thank you.

Kevin’s TIL infusion was on Monday June 17th.  Two days after the infusion, he started having fevers, which was “right on schedule” for what they expected with his treatment.  His fevers continued, getting higher and more severe over the next several days.  By day seven or eight, his fevers reached 105, and things started to get dangerous.  Kevin was so sick of the rigors that would happen on the way up and the way down from a fever, but still, things seemed to be under control relatively speaking.  On Wednesday June 26, Jude turned four years old.  We also heard the first little indicator that something might be wrong.  While his fevers seemed to have peaked and he was hopefully turning a corner, his docs mentioned that his liver levels were a little elevated, but that this is normal for the protocol.  They said, though, that his levels were a little higher than they usually see.  Yesterday morning, my sister Sarah flew in to be with us during what we had hoped would be our last few days here and then to hopefully drive the car back to Atlanta on Sunday or Monday.  While she was on the plane, the doctors told us that Kevin’s levels were getting too high and that they’d be needing to do some tests and take some action.  After they left the room, I asked the nurse for a copy of his bloodwork, and that’s when I saw the numbers I showed many of you on Facebook the other day.

The numbers on the left are his numbers, and the range on the right is what a normal person would have.  The Hs mean high and the double HHs mean stupid high.  My jaw kind of dropped when I saw these numbers because when his liver numbers jumped back in January, they were in the hundreds.  These are in the thousands.  I actually decided not to tell Kevin at first because it wasn’t really helpful to see something like this.  I bit my lip and tried to not get too nervous as I waited to hear from the doctors about the next steps.

By late afternoon they had a few hard theories about why this was happening and a plan for getting to the bottom of things.  They scheduled a liver biopsy for early Friday morning.  Since it involved anesthesia and possible intubation, they told him not to eat after midnight.  That wasn’t a problem because he really hadn’t had any appetite for the previous several days, you know, with the 105 fevers and all.  When they came in to discuss the plan with Kevin, they were amazed to see him sitting up in bed, two laptops spread in front of him, working away.  They said that his numbers had continued to jump, but the fact that he felt well enough to be working was an incredibly good (and surprising) sign.  Still, they hadn’t given us much to go on at this point.

Last night I stayed in the room with him again, we had an inattentive night nurse.  again.  and I didn’t sleep much.  again.  Oh yeah, and he had more fevers and rigors.  again.  Pile on the hot blankets, call the nurse for the demerol, strip off the blankets, get the ice packs, lather, rinse, repeat.

I ran over to the lodge in the morning to grab a change of clothes and soak in a hot bath for a few minutes and made it back to the room just in time for him to be wheeled down to radiology for the liver biopsy.  By this point we’d been given a little more information about what the liver biopsy hoped to help discover and a little more insight into the immunotherapy team’s thoughts on what is going on.

Basically, they think the elevated liver levels are caused by his TIL working a little too well.  If you remember, they took out tumor infiltrating lymphocytes (white blood cells) from inside a tumor on Kevin’s throat last January.  They then duplicated them in a lab to 860 million.  Then, when he came in a few weeks ago, the chemo destroyed his immune system to make room for them to infuse him with this super targeted immune system.  But before they infused those TIL back in, they genetically modified with cells with something called IL-12.  That modification made the TIL even more targeted to fight his cancer cells.  It also made it so that his immune system would stay “turned on” whenever it saw cancer cells in his body.

So, cut to today.  The thought is that the IL-12 just went a little crazy trying to fight cancer in his liver (there are after all a few tumors hanging out in there).  It went a little too crazy, like Rambo on a killing spree crazy.  They really do believe that this is all being caused by an immune response and so far the data seems to be suggesting this theory is correct.  Except for the fact that when patients have this kind of response, it’s never this large of a response.

So basically, it could be evidence of a good thing, that the TIL are working really, really well.  The problem, though, is that his liver just can’t handle that level of warfare.  This theory will be a little more confirmed after the results of the liver biopsy come back from pathology tomorrow.

But even without that confirmation, they have good reason to believe this is the case.  Because it’s happened before.  In one other patient, they have seen this kind of response.  And unfortunately, things spiraled out of control and she ended up dying.  Now, there were a lot of differences between that patient and Kevin.  A lot.  The biggest two being that there were not one but two genetic modifications made to her cells and that they didn’t figure out what was happening and why until it was too late to reverse things.

They think that they have caught things much sooner.  They say that Kevin is doing much  better than she was in every possible way.  And, the fact that they are only seeing this out of control immune response in his liver and not in other areas of functioning in his body is a good thing.  It again is hopefully an indicator that they’ve caught it early.  They are not taking any chances.  They transferred him to the ICU, and started moving forward with a plan to shut things down as quickly as possible.

ICU Welcome Basket

So in a nutshell.  His IL-12 have gone on a joyride and it’s time for the party to end.  It’s time to put the kabash on this thing.  There are three ways that they are trying to do this.  One, give him steroids to give him super human abilities to win the Tour de France AND to make the IL-12 TIL settle down.  Two, just try to kill off some of the IL-12 TIL outright with the super secret anti-serum that they happen to keep in a locked filing cabinet in the basement for just such an occasion as this.

I could tell you what’s under that brown bag, but then I’d have to kill you.

And three, try to clean out the IL-12 TIL by just removing his blood and replacing it with some fresh blood.  This process is called apheresis, and it’s pretty crazy.  I think the machine they use is a flux capacitor, but you know, I’m not a doctor, so don’t call me on that.

The flux capacitor

Anyway, they are very very hopeful.  But they are also taking all of this very seriously.  If this doesn’t work, and they really have no idea if it will, Kevin could be dead in three days.  His liver just won’t be able to handle it.  The trajectory of his levels is very very bad.  But if it does, then I suppose he’ll be one of those “interesting” cases that gets discussed at medical conferences.  Dammit, we hate being interesting.

Apheresis in action

It’s midnight now, and I’m really starting to get loopy, so I’ll try to finish up for now.  After realizing how serious things were, we decided it was time to get the kids out here so that if the worst were to happen, they would get to see him.  We put out a call to you all on Facebook, and the response still brings tears to my eyes.  The kids are getting on a flight tonight with Paul and Lila and will be here in the morning.  I’m so incredibly grateful for that.  I hope and pray and hope and pray and pray some more that by Sunday things will have turned around and we will have wasted a whole lot of other people’s money to get the kids out here and end up taking them to the national zoo instead of trying to find a pediatric grief counselor.

Man, this is crazy shit that I’m talking about.  I still can’t really believe what a wild ride we’re on.  I mean, Kevin and I are just normal people.  In fact, we lead a pretty boring life, and kinda like it that way.  How in the world did he get cancer, then progress to stage four, then we end up at a world class cancer center doing crazy experimental treatments?  How did we get to the point where we’re talking about funerals and the kids flying out to maybe say goodbye and crazy crap like that.  It’s like we’re in some bad movie of the week: “Skin cancer really is serious… the Kevin and Rachel Hill Story”

I’ve been feeling really weird all day as has Kevin.  We’re both in shock, but also the business of him being sent around from one procedure to another keeps you focused on something other than the really scary thoughts.  It’s a little quieter now, and they’re letting me break the rules and stay in the ICU after visiting hours (yet another sign that things are pretty serious) and now’s the time we’re both getting a little down as we sit quietly with our thoughts.  I’m sure the roller coaster will continue tomorrow, but for now, at least there’s a plan, our kids are on their way out to us, and we are both hoping that sleep will come easily tonight.

Watch and wait and hope

I am reminded once again of the verse which we based our family’s website address on… Micah 7:7.  But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.  For now, we watch in hope and wait on our Savior.  We ask that you join us in doing the same thing.

It’s been a rough and crazy day.  Kevin woke up in the middle of the night last night with a 105 fever.  It has hovered around that for the good part of the day today.  He has had the accompanying chills and rigors as well as crazy sweats.  So it’s been a constant rotation of piling on more hot blankets, then stripping them off again, then changing sweat soaked sheets, and holding the vomit bucket as the demerol (to treat the rigors) makes him nauseous.  And then pretty much lather, rinse, repeat.  Terrifying and exhausting.  But at the end of the day, we’re both still here and that’s plenty to be grateful for.  He made it through and the docs think the worst might just maybe be behind us.

But today has been special for a much different reason.  Today, Jude is four years old!  And to prove to us all that yes, he really is four, Lila said he woke up this morning, announced he was four, and then proceeded to run around the house with two pairs of underwear on his head, as if to say, “Look out world.  Four is gonna be awesome!”

I was sad that we couldn’t be there to celebrate with him and also that I wasn’t able to get out of the hospital enough to ship anything off to him.  But I still wanted to do something so I made a little photo scavenger hunt for Jude.  It came out pretty cute, and frankly I’m too exhausted to really write anything tonight, so I thought instead I’d share it with you.

Nothing fancy, I just texted a bunch of pictures with notes to Lila and had her show them to him or read what they said.  At each correct location, he also got a reward of a step in instructions for how to draw a simple picture (he’s really into drawing lately and I found great tutorials from Ed Emberley).  He ended the scavenger hunt in front of the computer where we got to Skype with him and tell him happy birthday!

Jude’s reward, a drawing tutorial from mommy:

Happy birthday kiddo!  I can’t wait till we can be there to celebrate with you!

We’ve been in the hospital for fourteen days.  The kids have been away from us for forty two days.  Kevin has had stage four cancer for three hundred and sixty six days.  He has “officially” had cancer for six hundred and twenty two days.

Our life has become a blur of days, sometimes very full ones where I am running around tending to kids, making doctor’s appointments, and calling on doctor’s bills.  Those days fly by.  Other days, like the last few, seem to drag on, an endless cycle of infusions, fevers, naps, and Netflix.

I can hardly believe it’s been a year since Kevin recurred.  I remember exactly where I was, eagerly anticipating a call from Kevin’s nurse, but being completely unprepared for the words that came out of her mouth… “The cancer has returned.”  My neighbor was on her way over to run an errand with me, and as I opened the door, I burst into tears and buried myself in her arms.  I sobbed and sobbed and sobbed.  I cried like I hadn’t cried since this whole thing began.

And when I was done, I took a deep breath, and figured out what to do next.  I called Kevin and made arrangements to pick him up at work and head over to the doctor’s office for a biopsy.  I made arrangements for the kids to go to my sister’s house and then my parents’.  I accepted Maiya’s offer to make us dinner that night.  And I started figuring out how to fundraise for the next stage of treatment.  Busyness kept me sane and helped me make it through as we prepared to run into the fire.

This time around though, I’m just tired.  More tired than I’ve ever been in my entire life.  And I’m not even the one with cancer!  I haven’t had the energy to write, though I’ve had so much I want to say.  I haven’t even really had the energy to sleep, if that makes any sense.  Yeah, I’ll doze off in the chair-bed here and there, but I’ve been too tired to get myself up, shower, brush my teeth, really get ready for bed; to tell my body it’s time to really sleep.  And all that tiredness is simply not sustainable.  I’d been sleeping in the room with Kevin, even though I have a hotel room at the Safra Lodge next door to the hospital.  He’s wanted me nearby, especially during the chemo, which was some of the worst chemo they dole out.  And I had been happy to stay with him.  I love him.  I don’t know how long I’ll get to keep him around.  And frankly, I wouldn’t want to be alone either.  But all this exhaustion was really taking its toll on me, and a few days ago, I just broke.

I started to cry and the floodgates opened up, just like they had a year ago.  Not any one big thing, just the build up of all those little things.  It’s the little things that really get ‘ya anyway, don’t they?  My friend Ali calls it the coca-cola complex.  You don’t fall apart when your loved one is in dire straights, in fact those are the times you’re somehow able to really keep it together.  But you completely lose it when Chick-Fil-A doesn’t carry coca-cola.  And all these strangers are wondering why you’re having a major melt-down when all they wanted were some waffle fries and polynesian sauce.

That’s how it was for me.  I went down the hall to get Kevin some fresh water.  I have these saltwater sandals that I love, but they’re not easy to slip on and off.  So I padded down the carpeted hallway in bare feet, just making a quick trip to the water fountain.  And halfway there, a nurse chastised me for being in bare feet on the filthy floor and that I’d be spreading germs if I didn’t have shoes on.  I felt my face flush, made a hundred and eighty degree turn, and scurried back into our room, Kevin still waiting, feverish, for some ice water.  At that exact moment, the social worker who I’d met exactly once (we’ve had four different social workers since we started here) walked in to check on me with that caring look on her face and the words, “and how are you doing?”  I lost it.  Completely lost it.  And then there was this awkward moment where I’m standing there crying, she’s standing in front of me, we’re both thinking, “do I hug?”  And I didn’t want to hug this person I don’t know.  I didn’t want to hug this person who had no idea what I was feeling, who only saw that I was crying because I had neglected to wear shoes outside of the hospital room.  I wanted someone who knew me, someone who understood.  But I didn’t have anyone except this social worker who was basically a stranger to me.  So again, I took a deep breath, pulled it together, and listened to her ever so helpful and innovative advice that I “really need to take care of myself first.”  I politely thanked her and let her slip out of the room to check our name off her list of people she’d helped that day.

The thing is, she’s probably a great social worker.  She probably understands the psychological impact of hospital life on patients and caregivers more than I ever will.  Heck, I’m sure there’s a course on it or a symposium or something that she’s attended, or maybe even spoken at.  But the reality is that I barely understand what I’m going through, and it feels like every minute it’s something different.  Sometimes I feel like crying, sometimes I’m mad.  Sometimes anxiety hits me seemingly out of nowhere and my chest tightens, I feel my face flush, shortness of breath, and even more fatigue washes over me.  Add to that that Kevin barely understands what he’s going through.  Every minute there’s something different for him, nausea, fatigue, fevers, chills, good fevers, bad fevers, worries about infection, it’s good to take a nap, don’t sleep too much or you’ll get bed sores, get out of the room, stay in the room, nearly every data input we have from every side is constantly changing.  And it’s really f-ing exhausting.

So after “sort of” losing it, I took another deep breath and turned inward.  There was nowhere else to turn, nothing on the outside made any sense, with constant changes and contradictions.  And as I turned inward, I closed my eyes, and said, “Lord, I can’t do this.  I absolutely can not do this anymore.”  And He said, “I know, my child.  You can’t.  You never could.  So let me do it.”  And then I cried.

I know we’ve all read that Footprints in the Sand poem a million times and it can seem trite because we’ve seen it so often.  But it truly is such a powerful reminder that our Father cares for us and carries us more than we can ever imagine in our little human brains.  That afternoon, a package arrived from a dear friend and in it was, you guessed it, a beautiful poster of the Footprints poem.  I don’t believe in coincidences anymore.

One night a man had a dream. He dreamed
he was walking along the beach with the LORD.

Across the sky flashed scenes from his life.
For each scene he noticed two sets of
footprints in the sand: one belonging
to him, and the other to the LORD.

 

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.

He noticed that many times along the path of
his life there was only one set of footprints.

 

He also noticed that it happened at the very
lowest and saddest times in his life.

This really bothered him and he
questioned the LORD about it:

“LORD, you said that once I decided to follow
you, you’d walk with me all the way.
But I have noticed that during the most
troublesome times in my life,
there is only one set of footprints.
I don’t understand why when
I needed you most you would leave me.”

 

The LORD replied:

“My son, my precious child,
I love you and I would never leave you.
During your times of trial and suffering,
when you see only one set of footprints,
it was then that I carried you.”