As I’m sure some of you already know from my post on facebook yesterday, we got the news that Kevin’s cancer has continued to progress and that he is definitely off of the anti-PD1 trial at UCLA.  We were sad to hear this, but frankly, not surprised.  Kevin has been feeling worse in many ways, and the tumors that we can see on the outside of his body have grown even to the human eye.  We were actually quite grateful that there was no especially bad news in the scans, suggesting a sudden burst of growth or something.  We have a few options that we are working on and we will let everyone know as soon as Plan E is finalized.

This brings me now to the title of my post.  As many of you know, after Kevin’s last set of scans about a month ago, I wrote this post to share the confusing and exciting news that Kevin was not, after all, off the trial and that there was still a chance that the treatment was working, even though the scans had shown disease progression.  We put a request out to all of you dear friends who read our blog and facebook for help getting the whole family out to Los Angeles so we could be together for the holidays, and the sheer volume of response was so overwhelming that it made me cry.  And now here we are, in some ways, right back where we were a month ago, with bad news and trying to figure out what the next step will be.

So I’m going to throw something crazy out there.  I STILL think this was a Christmas miracle.  Yes, Kevin still has cancer.  Yes, the cancer has gotten worse.  Yes, things still look bleak for his prognosis.  But the miracle is this:  God heard our prayers and gave us the holiday season to be with family instead of trudging up to Washington D.C. to start getting ready for an extremely brutal inpatient treatment.  We’ve had the last three weeks to be together and have lot’s of family fun time.  We had Christmas morning at Kevin’s cousin’s house, and we have the rest of this week to enjoy a family holiday vacation before jumping back into the fire of cancer treatment.

Just days before our last LA trip, our physician’s assistant at Emory called us to go over the scan results.  We both remember her saying that there were seven new spots on Kevin’s lungs.  When we went in to see the UCLA doctors, they went over the same report with us and there was no mention of anything new.  According to the report, the spots had been there before and had simply grown larger.  This is very important, because the fact that the report showed no new cancer was what allowed Kevin to have one more month to give this treatment a shot and what gave us the opportunity to be together as a family for the holidays.

Now do I think that those reports somehow magically changed over the weekend, when our church in LA prayed fervently over Kevin for healing?  Yeah, frankly, I do.  Yes, it’s possible that our physician’s assistant made a mistake and incorrectly interpreted the report to us, but neither of us remember him having lung metastases before.  And besides, she’s awesome and has lots of letters after her name.  I am choosing to believe that God heard our prayers and changed His mind.  You know He’s in the business of doing that, right?  There is story after story in the Bible of God planning to do one thing, then someone prays, and then God does something else.

So, yeah, this all sucks.  We had really hoped, even if we didn’t honestly believe that we would have good news yesterday and that Kevin could just keep plugging away on this trial.  We still hope that we will find a treatment that will work.  And we’re still sad and scared and trying not to worry and really, really exhausted.  And our faith wavers on a moment to moment basis.  And sometimes we get mad at God.  And sometimes we just want to run away from it all.  And sometimes we just hold each other tight and wonder how this whole things is going to turn out.

Yesterday, Kevin was saying that he really believes there is a story here.  I mean seriously, at this point, if he makes it through, it will already be a miracle.  I mean we’re going to be on Plan E, for pete’s sake!  But I think he’s onto something.  No matter how this plays out, there is a story unfolding.  It’s God’s story, and only He knows how it will end, but it’s a beautiful, powerful story of how. much. He loves us.

And it’s a story of hope… that we never stop believing that God is working things out.

And it’s a story of grace under fire and of strength and endurance.

It’s a beautiful story, and I want to just keep telling it the best I can and pray for God to keep carrying us through to the very end.

This is not so much an “update” post, and I know I’m sorely behind on that.  But instead of not writing until I found the time to be complete, I just wanted to share with you some lessons God is teaching me this morning. 

I don’t know if any of you have heard of that saying, “Average waves in unprotected waters.”  It’s the title of a short story I read in middle school and it’s always stuck with me.  It’s the idea that when big tragedies happen, people make it through because everyone rallies around them and helps keep them strong.  Like in storms, we always “batten down the hatches” etc.  But average waves in unprotected waters are the ones that always seem to knock us down, and even sweep us under.  I am feeling like that today.

In relative terms, we’re not really in “crisis” mode at the moment.  But I’m just worn out.  I got a parking ticket yesterday while I was IN my car, waiting to pick Kevin up from work.  I cried and begged the attendant not to give me the ticket, and she was just so exceptionally rude to me.  The ticket was only for $35, but it was more the emotional burden of just one. more. thing to have to deal with.  I’m exhausted and finding myself needing to try to pull back and do less and rest more.  But as I’m sure you all know, that is nigh onto impossible with a two year old and a three year old.  Add all our other junk on top and it’s just too much.

I sobbed the whole drive home, and in that moment I decided I was just going to quit.  I wanted to give up and bail on everything.  When we got home, Kevin handled the kids for bedtime and I went straight upstairs without saying anything and crawled into bed and cried some more.  It’s funny, you decide in your head you’re just going to quit, but like some bad joke in a movie, once you’re done being all dramatic, you pick up your head and realize that you’re still right where you left yourself before pitching a fit.  I wonder if that’s how toddlers feel.  It’s like, “hmmm.  I’m all done crying, and nothing has changed.  So, what should I do now?”  I mean, short of suicide or something, which is NOT how I was feeling, what does “just quitting” on being a mommy and wife and helping Kevin fight cancer and all that other junk even look like?  I mean, how do you actually “give up” anyway?

Random I know.  I got calmed down and then came down and joined Kevin and the kids for a few minutes before they went to bed, and then Kevin and I got to have a little quiet time to sit and rest before heading to bed ourselves.  He tried to cheer me up telling me that he was feeling really good today and that he hadn’t been nauseous in three days.  This is really a good thing, and I found myself so tired and worn out I couldn’t even really be happy about it.

Also, I find myself wanting to instantly jump to the hope that maybe this is a sign he’s turning a corner and the treatment is finally starting to work and maybe he’s going to live, etc. etc.  And then a voice inside of me stops those “unreasonable” thoughts and I try not to get my hopes up.  Then the other voice inside me says, “No, get your hopes up!  Even if they get dashed again, hope is all you’ve got these days!”  Hope IS unreasonable!  I read on a blog the other day that miracles happen when our believing runs out, yet God’s loving continues on.  So that is what I try to remember.

And so it goes.  Such is the emotional roller coaster of life.  I think it probably is for all of us, even for those who aren’t going through those big crises.  It’s those average waves in unprotected waters that so often seem to pull us under.  I talked with my neighbor this morning and she reminded me that Satan will inch in and try to get us down in any way he can, even with a parking ticket or a whining child.

This morning I was feeling my anxiety coming on again and the constant whining and needs of the kids was making me feel even more breathless and panicky.  I finally decided mommy needed a time-out and locked the kids in the playroom.  Now, why didn’t I think of that sooner?  With a video-monitor on the room and some distance between me and them, I am starting to catch my breath a little more and to remember a few of the promises God has made us.  Namely that He gives us grace for the day.  THIS day is the day The Lord has made.

Even if we are worn out and just DONE with trying to keep our heads above water, and there seems to be no way He can hold us up, all we need is just to have our little noses peeking above the flood level.  Sometimes that’s all we’ve got.  But for the day, that’s all I really need.  Thank you again dear friends, and please keep praying for us.  It’s these average waves that are really getting me down.  Praying grace and strength for us all in this season raising our precious little terrorists.  Praying for daily mercies anew and manna to carry us through.

Now, back to those little rugrats…

Love you all,

Rachel

Long before cancer, Micah 7:7 had been our family’s life verse… “But as for me, I watch and wait in hope for the Lord.  I wait for God my savior.  My God will hear me.”  We watch in hope and look for a miracle, knowing that miracles happen when believing runs out, yet God’s loving continues on.  Thank you for your prayers and support. 

Okay, so this is a CRAZY post. We are still a little confused and don’t exactly know what it means, but here’s what happened.

Last week we got the results of Kevin’s scans which showed that his cancer had progressed and suggested that his current Anti-PD1 treatment had not worked. All weekend we have been praying and crying and asking God for wisdom and discernment as we decided on and prepared for the next treatment option.

Per the rules of the trial Kevin is on, we presented ourselves at UCLA today for his 5th infusion that he got to receive regardless of the scan results. We first met with a cohort of Dr. Ribas, Dr. Glaspy. He looked over the scans and the reports and told us that what he was seeing was NOT suggesting that he would be off the trial and that Kevin’s scans showed only slight increases in the size of his tumors and that he did NOT have new tumors (somehow we must have gotten confused about this point). Because of the way this treatment works, immune cells infiltrate the tumors and can increase the size of the tumors slightly before they begin to shrink. This does not mean that the treatment is working, but what it means is that it’s not definitely NOT working.

Are you confused? Me too.

Anyway, this is the first not bad news we’ve gotten in quite a while! Long story short, we went over other options with this doctor should Kevin still ultimately be taken off this trial but then were instructed to make plans to return to UCLA right after Christmas for another set of scans and (potentially) a 6th Anti-PD1 infusion. We have scheduled the scans for the latest date possible at UCLA to give this slow acting treatment the best chance to “prove” that it’s working.

How crazy is this? I mean seriously. I have been spending the last four days randomly breaking down into tears in public places and begging God to make it not be so.

What?

You mean we’re NOT definitely off the trial? You mean it’s not NOT working? Maybe? In fact, maybe it’s even a sign that it is? Okay God, whatever is going on, it’s at least not bad news, so we’ll take it! And we praise You and thank You for being the one who continues to hear our prayers no matter how unreasonable I become.

At church on Sunday we cried and prayed with SO many friends and family who are joining is entreating God to work miracles in Kevin’s bodies. Even then I’d been feeling like it was getting unreasonable to think that things still might work out. Our friend Bob Swanson, who married us in that very church seven years ago, stood up and shared the verse that has been Kevin’s and my family verse since even before this whole cancer journey got started:

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.

Tears are streaming down my face as I write this. In public. Again. And I don’t care.

God HEARS us. God HEARD us. We keep waiting. We keep hoping. But GOD is WORKING. This treatment might be WORKING. That’s all I know, and there’s not one person on God’s green earth who will convince me otherwise.

WE NEED YOUR HELP!

SO, here’s the next step we have for now… Kevin has to return to LA right after Christmas. We would very much like to spend Christmas together as a family, and if it’s at all possible, Kevin and the kids and I could all come out together and celebrate here in LA. Of course, a quick search on Southwest and Delta suggests that that would be about $2000 worth of plane tickets. Well, maybe not.

But I thought, so many of you guys have helped us out with getting Kevin and I back and forth up until now, perhaps there are others of you who have miles to share that could help us get out here? Because there’s Kevin and me and both kids, we could all fly together as four tickets on one plane or two and two, meaning even if someone had enough miles for only one or two tickets, combined with someone else we could make it work.

This would be our Christmas wish to spend it all together and to celebrate hopefully good news with family and friends at our church in Los Angeles. If you think you might be able to help, will you please contact me? I can be reached via email at rachel at micah77.org

Here’s exactly what we need:
Flights for four people (two adults and two children) from the Atlanta area to anywhere in the Los Angeles or San Diego area. These could also be two separate flights of two and two (i.e. Jude and Kevin fly on one plane together and Evie and I go on some other separate flight).

Travel to take place to have us in Los Angeles at least on 12/26 and 12/27 (Kevin has scans and infusion those two days) So we would need to arrive BEFORE 12/26 and leave AFTER 12/27. We would love to fly on Christmas Day, we’ve done it many times before or even earlier in the week. We would really love to be able to stay through the weekend so as to have more time with friends and to attend our home church.

If you have frequent flyer miles that would equal enough for one or two or more round trip tickets around that time, contact me and maybe I can cobble together multiple peoples’ miles and make this all work! If you do have miles, don’t donate them to us (you lose miles by doing it this way) just email me how many miles you can offer and one what airline and I can see if I can piece it together to make a trip work.

Here is all of our information for booking tickets
Kevin Allan Hill 11/15/76
Rachel Suzanne Hill 5/19/79
Jude Allan Hill 6/26/09
Evelyn Lila Hill 1/1/11