We met with my surgeon today and received what we’re calling “qualified good news”.  First off, let me just say that my surgeon is an amazing human being.  Besides being one of the best-of-the-best surgeons, he has the perfect personality for us.  He cares deeply, but gets straight to the point and tells it like it is (no BS).   He immediately told us that my liver was NOT full of cancer and I would NOT need  major surgery on my liver.  I do have a tumor on my liver, but it is not the greatest cause for concern at the moment.  The problem now, is a tumor in a lymph node blocking my liver outflow ability.  This is very serious, but treatable.  He had already conferred with my other Emory docs and my UCLA doc, and they all agree that putting in a bile duct stent will solve the immediate issue.  This will be scheduled for  tomorrow or Friday (2/1) at Emory.  The reason we call this “qualified good news” is that we are still unsure if my doctors at the NIH will allow me back on the clinical trial for TIL therapy (a.k.a Adoptive Cell Therapy).  There are reasons for this of course, they’re not just being difficult.  The stent has a risk of infection and TIL therapy (a.k.a Adoptive Cell Therapy) will put me at even greater risk of infection so they are considering this carefully.    As a great thinker once said: “this is not ‘Nam, this is bowling, there are rules”.

So we don’t know anything beyond this week, and we are starting to learn to live like this regardless of the news (sortof).

A prayer sent to me from another amazing person awhile back…

From Celltic Daily Prayer Book

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.

Did I just put a prayer and The Big Lebowski in the same post?… I think I just did #thatcantbegood

So here’s what’s happened in the past few days.  Last weekend Kevin started to feel much sicker, and the change seemed rather sudden.  He felt tired and needed to rest most of the day and also felt nauseous, although he wasn’t throwing up a lot.  By Monday he was so worn out that he decided to call in sick from work.  By mid-day I put my foot down and told him I wanted to take him into the infusion center for fluids, hoping that that would at least help some.  We called our doctors and they said to come in right away and that they wanted him to have some blood drawn for labs before starting his infusions.  We got a babysitter and headed out, all the while praying that we would get a call SOON from the NIH saying his TIL was ready, because we were sensing that we were running out of time.  And just ten minutes later, while we were driving to Emory, we got the call!  TIL had grown and he was going to check in the next week to start his treatment.  I offered huge praises of thanks and relief, trusting that NOW everything would be okay.

Once we got his labs done, I got Kevin settled into his favorite vinyl lazy-boy, covered with a heated blanket.  They got his IV going and started him up on fluids and worked on orders to get him some nausea medications as well.  About 20 minutes later, our nurse from oncology came downstairs to speak with us.  She said that Kevin’s liver numbers were NOT good.  In fact, they were about five times what they should have been.  This was a very bad thing, and so she said to hang tight until we figured out what to do about it.  We called our NIH doctors to inform them and ask what they wanted us to do.  After looking over the numbers, they sadly informed us that he would no longer qualify to do the trial.  And they also offered no advice on what to do next, since they no considered him no longer their patient.  Without knowing what was going on next, we finished up fluids, prayed, called friends, and then finally headed home.  Our Emory team called and asked him to come in the next morning for more labs for comparison and also said that they’d be scheduling scans for as soon as possible this week to find out more of what was going on.

That night Kevin spiked a 101 fever and it continued throughout the night, finally coming down to about 100 degrees.  This may or may not be related to his liver function.  The next morning we went in again for more labs.  We brought the kids this time, thinking that it would be a quick, non-scary way for Jude especially to conceptualize what was going on.  It was a little tiring lugging two kids into the clinic and making them wash their hands ten thousand time and trying to keep them from spreading germs all over the furniture, but it was worth it.  The guy doing Kevin’s blood draw invited Jude in to “help” him with his Daddy.  Jude watched and helped pick out Daddy’s armband and the tech explained everything that was going on to Jude.  Then we packed everybody up and headed back home.  We fed the kids lunch and put them down for an early nap, because we were so worn out from exhaustion, sickness, and the emotional roller coaster we were on.

Right after we’d gotten the kids down, Emory called.  Our nurse said that Kevin’s levels had continued to rise substantially and that they would like him to come back right now if possible to do a hepatitis screen.  We all knew that hepatitis was extremely unlikely, but it had to be ruled out as quickly as possible.  Since Kevin is sometimes overwhelmed with waves of nausea out of the blue, we knew it wasn’t a good idea for him to go by himself.  A quick post to our neighborhood’s Facebook group and within minutes we had someone to drive Kevin back over while I stayed home with the kids.

Today we are having scans conducted all day, three sets!  And of course our insurance wouldn’t authorize them, seeing as there was less than a three day turnaround for the order.  So of course we had to sign a waiver saying that yes, we would pay the twenty some thousand dollars that all the scans would cost if insurance didn’t pay.  So we know that will be a fun battle with insurance coming up. We also had an appointment scheduled with Dr. Carlson, our surgical oncologist to see if liver surgery was an option.  And in the midst of all this, Kevin was called and asked to another set of labs and I was busy getting CDs of all of the scans so I could fedex them to UCLA for a second opinion on how next to proceed.  It’s been a wild day and we’re exhausted, still waiting for answers.  Will keep you posted.

Hi friends, So Kevin and I finally made it home. Amazingly, Kevin’s surgery went great, he had a perfect recovery in the hospital, and I managed to get a ticket on the same flight back as him just 24 hours later for only $122. We got in Tuesday evening around 6:30, our friends fed us an awesome stir-fry dinner, we passed out in our bed, and then Kevin got up and went to work the next day. I call that a miracle.

The kids are at my sister’s house for a couple days while I try to get a TON of stuff done including editing about 20 photo sessions from shoots I did at my church’s preschool back in Los Angeles, dealing with ANOTHER flat tire on our car (seriously, what is THAT about?!), and trying to make plans and coordinate care for the next phase of Kevin’s treatment.

In a nutshell, we are in the “eye” of the storm, and will head back up to D.C. for the super-intense three week inpatient phase in anywhere from 2-4 weeks.

In the meantime, I am trying to pick up the pieces from traveling for four weeks straight and all of the “house mess” fall-out that comes with the combination of that and having lived in “survival” mode pretty much ever since we moved into our house a little over a year ago. I don’t know if everyone knows this, but Kevin was diagnosed with cancer just two weeks after we closed on our house. He had his first surgery five days after we moved in. And oh yeah, we had two kids in diapers, Evie had a hundred and four temperature for three days over moving weekend, and our new (super old, but new to us) minivan we’d just purchased lost its transmission three days after we’d bought it. Ah, the good old days.

Anyway, I’m telling you all this to make you feel sorry for me and be willing to come help me on Saturday. I’m totally serious! For all you women out there who know how much a crazy, messy, dis-organized house can make a person fall into depression and can make it feel like everything else around her is falling apart, I don’t need to say anymore. I think you’ll do your best to come lend a hand. For the rest of you, just trust me when I say, I seriously need all hands on deck for me to keep keeping it together and taking care of all the things I have to to keep this family sane and relatively healthy in the midst of this crazy storm.

So here’s what I’m proposing… This Saturday, I’m throwing a “Hill Family Spring Cleaning Work Day”. I spent an hour this morning trying to break down all the crap that needs to be done to get this house back in order and wrote the tasks down on little index cards. I have a wall of index cards with a range of things that anyone with a few hours to spare on Saturday can come down and help with.

I need help getting things cleaned up and unpacked from traveling, but also help sorting and organizing paper to get medical bills and important paperwork under control. We need hands to wash and fold laundry. We need help organizing the freezer so when we come back I can just grab and heat up food easily. We need folks to blow or rake the blanket of leaves in the front and back yards so we don’t end up with a rat infiltration. We need folks who can change batteries in smoke detectors and change air filters. We need help cleaning out and vacumming the cars that haven’t been cleaned in oh, I really don’t want to think about it.

As hard as everything’s been so far, I just know it’s only going to get harder. On top of that, when Kevin comes home from the next phase of treatment, he will be coming home with a brand new immune system (a super fighter, grown in a lab, spiderman-style immune system) but a young one nonetheless, and he will be susceptible to infection. So I need the house to be super clean, linens washed, and air vents and ceiling fans vacuumed.

None of this stuff is very hard, and like I said, I’ve done my best to break everything down so that if I can get a BUNCH of you to descend on the house on Saturday, you can just take a card and get started and we can whip the house into shape and have at least that one thing ready for whatever happens next. Many hands make light work, so I’m asking any and all of you who are local to go to our Hill Family Fighters Facebook page and sign up for the event and come on down on Saturday to lend us a few hours and help me batten down the hatches and get the house ready for whatever comes next.

There are lot’s of tasks that can be done even if you have kids along with you, if they have a willing heart for helping out. There’s everything from emptying waste-baskets to using the hand vac to vacuum out the van. My kids won’t be there, but if you have super young ones and you want to bring them and have them play in the playroom while you help in whatever way you can, that’s cool too. Seriously, anybody who can help for any amount of time would be SO greatly appreciated.

Like I said, there’s a variety of tasks I’ve broken down, including a few handy-man type things. Seriously, we’ve been in survival mode since we moved in, and Kevin’s pretty much been too sick to do a whole lot and whatever energy he HAS had has gone into keeping up on his job. Bless that man, I am so proud of him for pushing through and that he is still working right now. For those who don’t know, other than the part-time photography work I’ve just started, I am a full-time stay at home mom at the moment (and full time learning everything about managing cancer adventures too job!) so I don’t have an income to speak of. The fact that Kevin’s worked so hard to continue working is the reason we are still financially solvent right now. But that has left him with little to no energy left for much else, and so again, that’s why I’m asking for your help with this sort of random assortment of spring cleaning, organizing, and handy-man tasks. Heck, our Christmas tree is still up! Seriously, help us not to be THOSE people!

Please come out Saturday morning to 746 Pearce St SW Atlanta GA 30310 from 9AM until 5PM to help for an hour or two or more. We will have krispy kreme donuts, bagels and cream cheese, and lot’s of fresh coffee for breakfast. We will order pizza at noon, and anybody who has stuck it out till dinner, we’ll have a tasty casserole. If you have any of the following equipment, please bring it along if you are able (be sure to mark it with your name so it doesn’t get mixed up). We could use: leaf blowers (with extension cord), rakes, vacuum cleaners, wheel barrows, painter’s ladders.

I have a friend who has graciously agreed to pay for a cleaning service to come in next week and do deep cleaning (bathrooms, floors, etc.) so it really will be more of the picking up, gathering stuff, folding laundry type variety of cleaning. Like I said, whatever and for however long you can offer to help, I will be so eternally grateful. There are a million things I still have to do and figure out before the next phase of treatment starts, and if I can have this big thing under control, it will be one huge step closer to being able to get ready.

Also, for those of you who are not local, I’m working on a few ways that you can help if you want to get involved. Be on the lookout for an updated how you can help page, and the most important thing right now is to just keep on praying.

Here are our specific prayer request for the time being:

• That God will miraculously heal Kevin’s cancer and give us all many more years with him.
• For healing of stage four melanoma for Kevin’s roommate at the NIH who divorced six months ago and then was diagnosed with stage four melanoma four months ago. He and his ex-wife have two young children, just like us. I cannot even begin to imagine going through all of this alone.
• That our children will remain healthy both emotionally and physically.
• That God will continue to miraculously give me extra measures of energy, stamina, comfort, and encouragement during this season.
• That the right child-care situation for our children during our next three week trip to D.C. will be made apparent to us and that our children will feel stable and happy.
• For financial provision during any un-paid time Kevin has to take off of work during his inpatient stay.
• For God’s continued veil of security and protection around our house (we live in a high-crime area, and miraculously through all of this travel, we have had NO issues of break-ins, violence, theft. etc. We believe this to be a truly miraculous protection from God and pray for it to continue)
• For God’s story to continue to be told humbly, honestly, and faithfully through this blog, our Facebook page, our interactions with friends and strangers, and our family. For God’s perfect will to be done and for us to trust Him hourly in it.

Okay, so I know I keep saying that “this is a really crazy post” and I’m probably starting to sound like the boy who cried wolf, but it really does just keep getting crazier and crazier! Let me first start by saying that I am 1) exhausted beyond all measure and 2) I believe our God is one of the most crazy amazing and creative beings we could ever imagine.

Do you guys all know the story about the man and the flood? To refresh your memory, the story goes something like this: A flood is coming. A neighbor knocks on a man’s door and says, “A flood is coming, you better take this life preserver and get out with me while you can!” The man says, “No, my God will save me.” An hour later, as the flood waters begin to rise, a rescue worker paddles by in a boat. He tells the man, “Get in this boat and ride to safety!” The man again replies, “No, my faith is strong. I know my God will save me.” The waters overtake the house and the man climbs out onto the roof. A helicopter hovers low and drops down a line saying, “Grab hold of this rope and we will fly you to safety!” The man again replies, “I’m fine, my God will save me.” Then the man drowns. When he gets to heaven, he says to God, “I had such faith in you. Why didn’t you save me?” God replies, “I sent you a life preserver, a boat, and a helicopter! What more did you want?

Now I’m going to tell you a story about what happened yesterday. There is so much to tell, but I will try to be as concise as possible so this post won’t be ridiculously long. After an exhausting trip to get the kids home from LA to Atlanta, Kevin and I made our way to Bethesda, Maryland, where we had an appointment with the National Institutes of Health. The purpose of the appointment was to try to get a surgery done where Kevin would have some immune cells harvested to prep for Plan F in case Plan E didn’t work.

In case you are a little lost, Plan E is a the VEM/MEK combo trial that we got accepted onto at UCLA but that our study coordinator there was getting transferred over to Vanderbilt for us, since Vanderbilt is only a four hour drive from Atlanta. Are you following all this? Basically, we had a perfectly orchestrated plan that involved a million little details falling into place including cross country trips, timing of surgeries, and coordination of huge research institutions. Big surprise things didn’t go as planned?

So anyway, the whole purpose of the D.C. visit was to get this one surgery done before we start treatment at Vanderbilt next week, that’s all you need to know. Well, we walk into our appointment in D.C. and tell the doctor that we are starting the Vanderbilt treatment next week and she tells us that she didn’t know we were doing that trial, and that if she’d know that, she would have told us not to come because they can’t do the harvest before starting that trial because the treatment would change the biology of the cells and make the harvest useless and that we would need to do it after we were done with that treatment.

Are you following any of this?

I know, me neither? Basically, we are sitting there thinking, “Well crap, did we seriously come to D.C. for nothing? Did we delay treatment and waste friends’ resources like apartments and planes for nothing?”

She leaves the room to check with another doctor and as she walks out the door, I notice a new email on my phone from the Vanderbilt doctor. This is the one who our study coordinator at UCLA was supposed to have been coordinating with to get us all transferred over and ready to start treatment before next Friday. The rules of the trial state that we have to start the trial by next Friday. The Vanderbilt doctor basically says, I have no idea why you thought you were starting treatment here next week. That is completely impossible and if you want to start treatment, you will have to start at UCLA and then try to transfer over after a few cycles of treatment.

What?

Wait, what? Did he just say that our whole, perfectly orchestrated plan fell apart and that the only way for Kevin to get treatment, ANY treatment is for us to fly our impossibly tired selves BACK to Los Angeles? That is if UCLA is even ready to treat us? What the heck is going on? I page our UCLA contact and set the page as high importance. I write back to the Vanderbilt doctor asking if anyone from UCLA contacted him a few days before about us starting next week. He writes back again re-iterating that he can’t see us next week but not answering my question about whether anyone has actually discussed this with him.

Kevin and I are about to cry.

We look at each other, hold hands, and try to pray. We try to set our minds on something, anything comforting. We start texting friends asking them to pray for us because we just can’t get it together. We look up Bible verses and start trying to figure out what, if anything, God is doing in the midst of this.

Finally, our doctors come back in and confirm that we can’t do the surgery before the VEM/MEK trial, but also sit down to ask us about why we were going to do that treatment as our next option anyway. Dr. Hughes especially is very concerned because, according to her, there is still not any data to suggest durable responses and the TIL therapy, although a pretty grueling treatment, still has the chance of being curative. A 50% chance, no less. We tell her that at that exact moment our other treatment options seem to be falling apart anyway, and so please tell us more again about the TIL therapy, when we could start, how it works, side effects, time off from work, etc.

As we go over everything again, we remember that we had originally planned on doing TIL therapy as the next option if the Anti-PD1 treatment hadn’t worked. I’m not really sure what happened that made us decide to pursue the other treatment. I don’t know if it even really matters right now. They send us downstairs to do some bloodwork to see if his liver is even in decent enough shape to do the treatment, since there is a large tumor that has been growing at the top of his liver and possibly affecting liver function. We go downstairs. We continue to try to pray. We talk about the treatment. I am starting to feel like God is sending us a sign.

I mean seriously, between being told that we couldn’t do the surgery now and then just minutes later that the Vanderbilt transfer was falling apart? That timing felt more than coincidental to me.

Kevin wasn’t convinced.

Honestly I wasn’t really convinced either. I mean, Kevin and I are not the type of folks who really feel like we see God working in signs and symbols. We don’t usually think that God “gave us” this particular parking spot or whatever. But we also have seen SO many times over the last year the way that things have worked out just too perfectly to be coincidence. Or how it seems God has orchestrated us meeting people at exactly the times that we or they needed us to be connected. We’ve seen it. A lot.

But this all seemed, well too crazy to be coming from God.

I mean seriously, change EVERYthing that we’ve been planning on since before Christmas?

We went back upstairs and waited for the results of the labwork while we continued to discuss the various pros and cons of the treatments, what the hell was happening with Vanderbilt and UCLA, what the fall-out might be for Kevin with time off from work with each treatment, etc. Something we said about work triggered a thought in a lady who was sitting behind us and she turned around to tell us that her husband had just finished the TIL therapy and that he’d finished on a Friday and was back to work on a Monday. Our jaw dropped. She continued to share a little more about the treatment and commiserated with Kevin that her husband had said the IL-2 (what he did last summer) was worse than this. She said he was very tired, but other than that did okay. She said he was downstairs right now on a conference call! Kevin went in to talk with the doctors while I stayed back for a few more minutes to talk with my new friend Jill. The similarities were stunning. Her husband had been Stage 3C and had done surgery, radiation, and interferon. He had recurred right after finishing interferon. He had done IL-2 with no success. His doctors at Johns Hopkins had recommended he connect with the NIH as his next best options for treatment. Jill and Mike have two young children.

I could have cried right there. God just sent us a helicopter.

We went in and signed up for the trial. They scheduled Kevin for a brain MRI this morning and for a process called apheresis, whereby they take out a bunch of his white blood cells in preparation for the TIL therapy in a few weeks. It’s a process similar to donating platelets, but it’s five hours long instead of two. So we will have a long day today.

Our weekend is free, and we will probably spend it resting and maybe, just maybe, try to take in a sight or two in D.C. Then Sunday evening Kevin will be admitted to the hospital. Monday morning, he will have a surgery to remove the two large tumors on his neck. I know he’ll be glad to see those go. We will probably stay at the hospital until Tuesday, and then head back home Tuesday afternoon. They said Kevin should be find to go back to work on Wednesday!

Provided all goes according to plan (ha!) Kevin’s tumors will be dissected and any tumor infiltrating lymphocytes will be removed and duplicated in a lab. These TILs will be used to create an army of super-fighter immune cells. Once the TIL has grown (2-4 weeks) we will receive a call and then head back up to D.C. for a three week inpatient stay. During that time, the doctors will use two forms of chemotherapy to destroy Kevin’s immune system, then infuse his body with the super fighter cells, then follow it up with either IL-12 or Il-2 to boost the immune system to start really attacking the tumors. Then, once he’s well enough to travel safely, we’ll head home.

The treatment will usually start showing results about a month after that, and it works for about 50% of patients.

So, there you have it. Our crazy, insane, story where everything got flipped upside down and inside out but all came back together in exactly the way God wanted it to.