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.”

It’s a marathon, not a sprint.  While waiting for my Neutrophils to come back, fevers and chills continue.  My docs are confident that they are evidence of a positive immune response!  Getting platelets and red blood cells infused now, but this too is completely normal.  It’s exhausting and draining, but we are making it through one day at a time.

Special thanks to everyone who can/does donate blood and platelets.  You are saving lives!

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.

Hi folks, just a quick update for now.  Thankfully, my cell(s) infusion was very uneventful.  No side effects except for fatigue resulting from neutropenia, which was anticipated.  I’m now down to monitoring only every 4 hours.  Thanks for all the well wishes and prayers.

Well folks, today’s the big day.  My docs just notified me that they will be infusing my “super cells” back into my body around 12-noon EST today.  This is the climax of everything that we have been preparing for.  The amazing/scary part about this, and the reason we call it the “spider man treatment”, is that my cells have been genetically modified in the lab.  My doctor literally said “we’re going to infuse your cells over 30 minutes, fasten our seat-belts, and see what happens”.  WUH?  “See what happens?!?”. Most likely nothing will happen.  But just as a precaution they will be checking my vital signs every 15 minutes for the first hour, then once an hour, then every 4 hours.  They have seen high fevers, chills (a.k.a Rigor), and various other scary things they’re probably not telling me about, in other patients receiving cells.  So what does that mean for me?   In the words of Brandt from The Big Lebowski, “Well dude, we just don’t know“.  Due to the “experimental” nature of the treatment, Rachel and I often refer to it is the “Spider-Man Treatment”.  Maybe I’ll get a 6th “spider-sense“, that would be cool.

So for now we pray.

The Boisil Compline

Boisil, Prior of Melrose Abbey, died 661 BCE.

I am placing my soul and my body
in Thy safe keeping this night, O God,
in Thy safe keeping, O Jesus Christ,
in Thy safe keeping, O Spirit of perfect truth.
The Three who would defend my cause
be keeping me this night from harm.

I call on You, O God,
For You will answer me;
Give ear to me and hear my prayer.

Show the wonder of Your great love,
You who save by Your right hand
those who take refuge in You from their foes.

Keep me as a apple of Your eye;
hide me in the shadow of Your wings.

This TED Talk explains our predicament/experience with cancer perfectly!   It has been both extremely difficult and truly amazing.  We thank you from the bottom of our hearts.

Warning!  slightly NSFW.

[ted id=1682]

Good news! I just got the green light, my cells are still active in the lab! So this means 2 different chemo infusions, starting at 5pm EST tonight. Thanks for all the well wishes and prayers.

Quick update: no news on how my cells are doing yet, but I expect to hear by noon EST today.  If cells are good I will start 5 days of chemo tonight.  Thanks for all the prayers!