Plan E 2.0

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We are NOT giving up hope.

Here is the long awaited update and info about plan E.  Yes, you heard that right, plan E.  Things are getting pretty crazy, ya’ll.

We are still in Los Angeles, and will stay here until Tuesday 1/8. After Kevin’s last scans he was taken off of the Anti-PD1 trial.  But then he was offered another trial here at UCLA. It’s a trial of the combination of a BRAF inhibitor called Vemurafenib and a MEK inhibitor and without getting too geeky in this post, let’s just say it’s a very good trial for him to get onto.

The phase 1 trial has shown very good results, in fact so good that randomized trials will be opening up very soon. We definitely want Kevin to be on this trial though, because he would be guaranteed to get the combination that has shown better responses. But it unfortunately requires weekly visits to UCLA for a couple of months, which is just not sustainable.  However, Vanderbilt University in Nashville has the same trial, but no open spots.  And wouldn’t you just know it, both Vanderbilt and UCLA agreed to let Kevin take his UCLA spot and transfer over to Vanderbilt to receive treatment.  Absolutely amazing.

So for now, this is our plan E: the BRAF/MEK combination trial, which will consist of daily pills and will hopefully start showing an immediate response.  He has screening tests to do here at UCLA and should start receiving his treatment at Vanderbilt in about two weeks.

Because this treatment tends to not be long lasting, we are in preparations for Plan F, or E 2.0 as we like to call it. This involves traveling to Washington D.C. to meet with the National Institutes of Health again to get set up for TIL therapy. Since it is a multi-step process, and since the first step requires him being off of any treatment drug for thirty days (which he currently is) we are going to try to get the ball rolling on that before  he starts the BRAF/MEK treatment.  This involves a minor surgery that will hopefully happen next Friday or the beginning of the following week.

So our basic “travel schedule” is this:  We stay here in LA until Tuesday the 8th.  Jude and I fly back early on the morning of the 8th.  Kevin and Evie fly back the evening of the 8th.  We leave the kids with family and fly to D.C. on the 9th.  Clinic visit at the NIH on the 10th.  Stay in D.C. for… not quite sure?  Fly back to Atlanta. Start traveling to Vanderbilt for treatment the week after we get back from D.C.  Whew, I don’t know about you but I get tired just thinking about it all!

We are so incredibly thankful for the help from so many people who have been helping us keep moving forward on this journey as we march through the alphabet of various plans.  So many of you have donated miles to help Kevin and I and the kids fly all over the country for treatment.  Others have donated money that has been used to help with medical bills and to help keep us solvent with the missed work and extra travel expenses.  Countless others have baked more casseroles and brought over more jars of soup than I can even begin to fathom.  And an army of you is covering us in prayer.  That is perhaps the sweetest gift of all.

I am getting to work on fully updating our “how you can help” page with specific things for the next chapter of our journey, practical things like amazon links to purchase diapers and more meal sign-ups, for example.  I will do my best to get that all up to date soon and to keep communicating to you, my dear and wonderful army of fighters, so we can keep right on marching through plan Q if that’s what it takes!

I cannot tell you how much it means, knowing that we are entering an even crazier season yet, where it is very likely that finances will get very tight, where our emotional and physical reserves are already SO depleted, that we feel God’s arms wrapped oh so snugly around us, carried and supported the body of Christ.

Thank you.

Thank you again dear friends, family, followers across the world for all of your care and support. It means more than you can possibly imagine.

Never give up.  Never ever ever ever give up.

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Thank you to our dear friend Ashley Jones of Shuttersweet Photography for the beautiful pictures.  I’ll be sharing more of them very soon.

You call THAT a Christmas Miracle?

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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.

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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.

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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.

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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.

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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.

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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.

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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.

When you just want to give up

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. 

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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…

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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. 

 

A Christmas Miracle?

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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

Still no news… letting go of the future

On my church’s mom’s group email list, we have a question of the week.  This week’s one really touched me because it hits on a lifelong area of struggle for me… finding contentedness in our present life.  In answering it, it kind of turned into a blog post, so I thought I’d share here.  It’s kinda long, but I hope it speaks to some of you.
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I somehow missed this QOTW in the craziness of yesterday, but was so moved by what you posted that I had to share my answer.  The question was, “As a mother, are there things in life that we are afraid to relinquish control of?”
As most of you know, a little over a year ago my husband Kevin was diagnosed with melanoma (a serious form of skin cancer).  Over the weeks and months that followed, we slowly came to the realization that this was, in fact, a big deal, and that we very well might lose him to this cancer.  Both Kevin and I have had many moments where we sat staring each other in the face wondering how this was all going to play out and how we would make it through.  I constantly said, “If only we KNEW which way it was gonna go.  Then we could make a plan.”  Well, for those of you who have been following, we may be about to be on Plan E.  So you can see how well THAT worked out.
One of the biggest areas of my life that I have struggled with was living in the future.  I spent most of my childhood thinking that once I grew up, then I’d be able to make friends, and dress cool, and be popular.  I remember in my late teens thinking that life would start in college.  I remember when my college days ended up looking differently than I’d imagined, dreaming of a house and a family to raise. Seven years ago, one of my dreams for the future came true, marrying an amazing husband.  And for the most part, I was happy.  But still I struggled as we lived in a cramped apartment, tried to pay down mountains of debt, and I worked on finishing my undergraduate degree.  I still found myself dreaming of “someday” with my focus now fixed on a house, the very thing that was pretty much an impossibility in the days of the housing boom and Los Angeles’ $700K home prices. Still, I struggled and tried to find contentedness in the day.  Then, after we moved to Atlanta to be closer to my family and for those elusive low housing prices, I really felt like life was “about to start”.  We spent a year looking for a house, lived with my parents for 8.5 months, and even made it through a 2.5 month job search for my husband.  I was starting to grow a little, having patience that God was working things out, but still thinking that once we finally had our house, then we’d be settled, a picture perfect little family with our girl and our boy.
Evie was born two weeks early and had a weeklong NICU stay.  Still, I didn’t surrender to God my desires to live in and plan for the future.  I looked to the day she’d be released and come home with us instead of focusing on her in those quiet moments.  Then she was the most colicky baby I’ve ever met and I spent six months waiting for her to grow out of it, praying daily to stop wishing this time away, this babyhood that was so fleeting and yet so miserable in the moment.
I knew, stirring in me, that God wanted me to stop yearning for the future day, that future moment when everything would be “just perfect.”  Then, in September of 2011, we did it.  We closed on our first, and hopefully only house.  As the contractors started to clean it up with fresh paint and flooring, I saw my dream house begin to appear from the dark and dirty bank owned house it had been.  Walls came down and new dreams went up.  I began again to envision our life through the years in this house… Celebrations and daily rhythms of life… homeschooling in the new, sky-light filled office… sliding down the slide in the playroom… hosting guests in the dedicated guest bedroom.  My head and my heart began spending way too much time on pinterest, making plans for the future.
Two weeks after we closed on the house, Kevin got a phone call.  It was just a casual call from the dermatologist saying that the biopsy of his bleeding mole on his face had come back cancerous.  A quick google search told me 90 percent of skin cancers are non malignant and so I put the worry out of my mind until the follow up appointment they’d scheduled for a week later.  Oddly, I didn’t spend any time thinking about the future of THAT.  It seems my struggles had always been my future dreams, not my future fears.
After that appointment came, with the jaw dropping realization that it was, in fact, melanoma, the less than 10% of skin cancers that were the bad kind and that this was, in fact, a very serious and aggressive form of it, my future dreams came to a screeching halt.  I was forced right into the present day, knee deep in contractor delays, moving boxes, scheduled surgeries, a newly purchased mini-van with a dead transmission and a 10 month old with a urinary tract infection.  And so it has been for the last year.  Every day has been filled with just surviving and tending to the most pressing issues in the moment.  It’s not exactly the way that I would have wanted God to teach me to let go of living in the future, but it sure has been effective.
That’s not to say that every day has been a horrible struggle, nothing of the sort.  It’s just that, every day, I wake up and ask God to help me figure out what has to be done TODAY, because I have nothing else that I can plan for.  I ask, no beg, His help to figure it out, because I simply cannot do it myself.  That point was made abundantly clear to me through the past year.
Lot’s of days, we wake up and I realize that what is most important today is to spend special time just focused on the kids, regardless of the disaster zone in the house.  So we run away from the mess… to a park or a coffee shop or even to the playroom at church.  We sit and connect and play and then I come home and feed the kids and put them down for a nap.  Sometimes God helps me find some extra energy to deal with the one or two most important phone calls on medical bills or whatever during nap-time and sometimes He grants me peace and rest to nap myself.
On some days, it’s a day where the bills or phone calls or traffic tickets or rodent problems absolutely must be dealt with, and God urges a friend to send me a text in the morning, just checking in, and offering help with the kids.  I ship them off to that friend or neighbor and focus on the tasks at hand, again realizing that God is carrying me and providing for me, literally one hour at a time.
Some weekends, Kevin is well and we have wonderful family fun days.  Other times, we are exhausted and send the kids to my parents and lie in bed for half of our Saturday.  Then we go out to breakfast with a gift card some kind soul has sent to us.  We sit and connect over coffee and eggs.
In all of those moments, God reminds me that His bread is DAILY.  It cannot be treasured and saved up for the future.  He reminds me that worrying will do nothing about the future and that there is no place for it in HIS plan.  He has literally jerked me out of my future dreaming to be present for today.
It has been no small journey, and still it continues.  There are many, many moments when I wish I could look to the future and see something other than a big out of focus blur.  There is no possible way to dream of the future right now because we have absolutely NO WAY of knowing how this will play out.
But isn’t that really the truth with all of us?  I mean, I keep reminding myself that everyday Kevin or I or the kids could die in a car accident (and that frankly, it’s statistically more likely!).  But normally, we don’t live like that.  We live like we have days and days and years and years ahead of us.
And I don’t know about you, but I have spent SO much of my life thinking of those days and days and years and years of future enjoyment at the sacrifice of today’s present.  Today’s present really IS a present.  It’s the only one we have!  God does NOT promise us future days.  In fact, He makes the point abundantly clear that while He has a plan for our lives, including our futures, that is not our domain to consider.  We are to look to Him, trust Him, and eat of His daily bread.  The manna that the Children of Israel collected for the future literally rotted overnight.  And again He reminded them that His provision was for the day, nothing more.
But also nothing less.
And so back to the question.  As a mother, what am I afraid of relinquishing control of?  My future dreams and plans and desires, absolutely.  But as God pries them out of my tightly clenched fists, I realize that I was never in control to begin with, and that a Father who is so much wiser and more loving and more powerful than I will ever be… Well, He’s already on it.

Scans today. A chapter ends. A chapter begins.

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Okay, so I’ve been in the midst of portrait party editing and tending to my little chicks and it’s all been a wonderful blessing to keep me busy in the days leading up to today, but now here it is upon us.  Kevin Hill has scans today, at 4:15 and 5:30 to determine if the Anti-PD1 treatment he’s been on at UCLA has been working enough for him to continue treatment.  The current chapter of our life comes to an end this afternoon and what awaits is still yet to be known.  As our family verse reminds us, [We] watch in hope for the LORD, [we] wait for God [our] Savior; [Our] God will hear [us]… Micah 7:7.  Now, we watch and we wait.

 

How to prepare for guests

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While we are ticking off the days till Kevin’s next scans and making other pre-emptive treatment plans, I thought I’d digress a little from cancer news and write about fun stuff this week.  I’d always envisioned this blog more as a place for fun little posts like this, and I suppose there’s room for both kinds, right?  More celebrations posts to come this week too!

When we were looking for a house, one of the things we knew we wanted was four bedrooms.  We only had two kids (and knew already that we were a “two and we’re through” kinda family), but we really wanted that fourth bedroom to use as a combined office and guest bedroom.  So when we ended up in a house with four bedrooms AND a separate office, we were overjoyed that we could have a dedicated guest bedroom.  And when I say we, I really mean me.  This was my little room to decorate and make sweet and special.  I like to call it The Hill Family Bed & Breakfast.

Little did I know that we would end up really needing to use it this last year.  Between all of Kevin’s surgeries, radiation, and other various treatments, we have had many, many house-guests come to visit and help out.  It’s been SO wonderful to have a separate space where our guests can retreat and relax, and I’ve really worked to make the space as comfortable and useful as possible.

I’ve definitely had the chance to put this guest room through it’s paces, and while not everyone has a separate, dedicated room for guests, I hope that all of you will find a few tips here that will be helpful as you prepare for your own guests this upcoming holiday season.  Most of these ideas can still be used whether your guest is couch surfing, sleeping on an air mattress, or borrowing the kids’ room.

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  • Have lot’s of clear, horizontal surfaces

When decorating this room, I was just itching to put out lot’s of lovely little knick-knacks and such to make the room as homey as possible.  But I realized that when my guests were here, they needed all that space to put their stuff.  So now I try to leave as many clear surfaces as possible in the guest room.  I also try to keep lot’s of horizontal spaces clear in the common areas of the house as well for guests to set down their bags, keys, phones, etc.

  • Provide bedside lighting

When guests are in an unfamiliar room, it can be difficult to stumble back to the bed after turning off the overhead light.  A simple bedside lamp adds a welcoming glow to the room.  I also added a night-light to the room on the advice of one of our aunts.  It makes it much easier for guests to find their way to the bathroom in the middle of the night and I put it in an outlet along an open wall, so it’s easy enough to unplug if they find it distracting.

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  • Provide water and light refreshments or information about how to find them

I like to set out a carafe of fresh water and a glass in case my guests need to take bedtime medicines, etc.  I also printed out a simple little note with information on where to find coffee and other snacks in the kitchen and how to adjust the thermostat, where to find more blankets, etc.  It was easy and fun to make my little sign and I just popped it into a dollar store frame.  And it totally makes me smile.

  • Provide extra seating

It’s nice to have somewhere else to sit and enjoy some quiet time reading a book or working on the computer without always having to perch on the bed.  If you have space for two or even three seating options, that’s a bonus!

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  • Provide the wifi password and extra outlets to power up

My friend Erica gave me this little chalkboard decal and I knew it would be perfect to put the wifi info on, since my husband is forever updating and changing it.  Visitors love being able to log right on after they’ve settled into their room for the night and not have to disturb us for the password.  I also tacked a little shelf up right behind the desk and placed a power strip on it.  This way my guests can plug in without having to crawl around on the floor, but they don’t have a nasty pile of cords taking up their workspace.  I’d like to eventually replace this strip with one of those new fangled ones that has USB charging ports built right in.  One less thing for my guests to have to remember!

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  • Put a clock in the room, but not if it ticks

It’s very nice to have an extra clock when you’ve been travelling, especially if you are in a different time-zone or you’re on someone else’s schedule. But if the clock ticks, put it in the bathroom instead so it doesn’t keep your guests up all night.

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  • Provide extra toiletries and make sure your guests know where to find them.

I know I am always forgetting something when I travel.  So to make my guests more comfortable, I dumped an assortment of hotel toiletries and other necessaries in the top drawer of the guest bathroom.  I also made sure to include some packages of feminine hygiene products, because trust me, that is not the thing that you want to ask your hosts for in case you forgot to pack them.  Not that it’s ever happened to me before or anything.

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  • Provide a place to put their suitcase and a basket for dirty laundry

I found this luggage rack at a thrift store for ten bucks and I love it!  It makes me feel like I’m running a real little bed and breakfast!  I also stuck a small laundry basket from the dollar store in the room so guests have somewhere for their dirty laundry to collect.  You could even line the basket with a plastic bag in case your guests prefer to bring their dirty laundry back in their suitcase with them instead of washing it before they leave.

Some other things that are nice to consider for guests:

  • If you have a TV in the room, print out clear, simple instructions for how to use it.
  • Put a blank notepad and pens into the desk drawer, along with perhaps a city map, bus or subway schedule, and a subway card.  Pizza or takeout menus could be nice too.  Think of the types of things you’ve appreciated at a nice hotel stay.
  • If your guests will be coming and going separately from you, provide a set of keys and clear, written instructions for how to work the alarm.  Put the alarm info on the back of an old business card so they can slip it into their wallet.
  • Clear out space in the closet and leave some empty hangers for your guests.

Not all of these tips will be relevant to everyone, but I hope that implementing even a few of these ideas can make hosting during the holidays easier and more enjoyable for you and your guests..

I hope you also enjoyed seeing a few pics of our guest bedroom.  It’s my chance to slowly start showing off little parts of our house.  It’s still a work in progress, (as are all of our homes, right?!) but I’m enjoying whenever we have a few moments of peace to fix up our house and make it even more our home.  I want to get some art up on the walls, and I’ve already put some new lamps in (one on each side of the bed.)  I’d also love to place a hanging lamp over the armchair for reading, and do something to tie in the red chair with the rest of the room (hopefully with art).

Well, I hope you all have a wonderful start to your holiday season.

And to all our friends and relatives who are far flung, come visit us, the door is always open, and the coffee is always ready!

Kevin Update and Celebrations – Kevin’s 36th Birthday!

Airplane

Okay, so here is the latest on our cancer news. Kevin and I flew to Los Angeles early last week for his fourth and final infusion before scans to check the efficacy of the treatment. In our appointment, the doctor measured the tumors on his neck and confirmed that they have grown some since he started this treatment. We won’t know for sure until scans in one week (so get praying everybody!!!) but it’s looking likely that the treatment has not worked and that we will have to move to plan D or E or whatever it is we are on at this point.  In fact, Dr. Ribas told us to start preparing for alternate treatment plans.  

Not really what were hoping to hear.

But… it is what it is, so we journey on.

Kevin will have scans conducted at Emory next Monday, November 26th at 4:15 PM.  If you think of it, text him throughout the day to remind him NOT to eat, because if we have to delay these scans by even one day, I swear I will lose my mind!

Anyway, If we get bad news from the scans, we will move to a treatment at the National Institutes of Health in Washington D.C. It’s a grueling treatment called TIL therapy that involves harvesting one of his tumors, finding the strongest little cancer fighter cells that are in there (called Tumor Infiltrating Lymphocytes) , growing an army of these fighter cells in a lab, destroying his immune system with chemo and various other instruments of torture, then infusing his body with this army of super fighters, and topping it off with a week of InterLeukin-2 (his favorite treatment from last summer) to kick his new super immune system into overdrive and maybe, just maybe, kill those stupid cancer cells once and for all. Then they send us home for him to recover from all that torture. They are telling us to expect at least3 weeks inpatient and then 2-3 months of him being too sick to work.  That’s in addition to several back and forth trips before and after the main treatment.

Who knows what it will actually be like, and who knows if that is even the path we will be on. There is still definitely a chance that this current treatment IS working and that he WILL be able to continue with it. And so we brace for the worst and pray for the best. I hope you will all join me in praying for AWESOME scan results in one week!

So anyway, after our discouraging appointment with Dr. Ribas on Tuesday, Kevin got his fourth infusion of Anti-PD1.  Then we had a nice birthday lunch with his cousin Claudia and spent the afternoon ogling techno-toys at the Microsoft Store and the Apple Store (Kevin is lusting after some HP Envy X2 thingy, so we can go back to our Apple vs. Microsoft wars.  We are tech nerds to our core).

Then we headed back to the Vornbrocks’ house where Lila had been spending the day getting things ready for a little birthday party for Kevin.  We kept it small with just a few of his childhood friends and their families.  It was a perfect, laidback gathering, and I’m so glad that Lila made it happen.  Like I said earlier, things like celebrations keep tending to fall by the wayside when you are just surviving day in and day out.  And this celebration was especially special because Kevin also celebrated his “cancer-versary” just about a month earlier.  He has made it a year!  He made it to 36!  This is no small feat in the melanoma world, and I am so incredibly grateful to still have that man around.

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Yes, there really are 36 candles on that cake.  He’s earned every last one of them!

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There was so much smoke afterwards, we almost had to call the fire department!

 

And P.S.  the photographer in me just can’t let these pictures go into the interwebs without saying that it was really really dark but I refused to use my flash, so the color’s more than a little off.  Also, I have not edited these pictures one bit.  They’re far from perfect, but I’m working on letting go of perfection.  So this is my way of sharing with ya’ll.  Trust me, it’s a big deal for me  that I’ve started posting pictures un-sharpened and with color all wonky, etc.  I’m making progress, ya’ll!

Celebrations – Jude’s Party

My adorable little son just cracks me up.  He is three years old and discussions with him about everything are fun and often hilarious.  Lately he’d been telling me all about his party that he was going to have.  He’d say, “When we have my party, we are going to blow bubbles and play with water and do BIG LOADER!”  (a favorite car toy of his)  I would ask him about this mysterious party and then he’d get all cagey and shy.  Then an hour later he would say, “We are going to eat yogurt and fruit and bagels at my party!” (what we were having for breakfast at that moment.)  This went on for a good part of this week and I realized that he’d been to a few parties lately, including his cousin’s birthday party and the Halloween party, and he just really wanted to have a party of his own.

 

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So I decided to let him throw a party.  On Friday night a week ago, I emailed my church’s mom’s group, some friends and family, and messaged our neighborhood’s facebook group that Jude was throwing a party on Saturday from 4-7.  I said that it was a three year old-centric party but all were welcome to come.

 

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On Saturday morning when Jude woke up, I told him I had a surprise for him.  He curled up in my lap in the rocker and I told him that today he was throwing a party. And that we had lot’s of work to do that morning to get ready for his party.

 

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Kevin was sick and not able to take care of Evie while Jude and I shopped and prepared for his party.  Of course, right?!  So again I prayed, then gratefully reached out to my neighbor Dawn, who took Evie for the morning so Jude and I could have special time planning his party and Kevin could get some more rest.  I was glad that he ended up feeling well enough to at least enjoy the party.

 

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We had a wonderful morning starting with breakfast at the bagel shop. We planned his menu and decorations then headed to the store to make his purchases.  I asked him to make lot’s of decisions like, “Do you want goldfish crackers or animal crackers?”  And he would invariably answer me, “I don’t know.  I need to think about it.”  Any of you who know my husband should be laughing right now.

 

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So, we got his snacks and decorations purchased, which consisted of goldfish crackers, apples, grapes, carrots, AND animal crackers.  And of course milk and cookies.  Because what party would be complete without milk and cookies?

 

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And balloons.  That was really his only request for decorations.  Balloons, and lot’s of them.  Jude helped me prep his refreshments and do some house cleaning  then he, lucky kid, took a long nap so he would be nice and refreshed for his party.  I of course, finished cleaning during naptime and really right up until his party started.  I have a philosophy though that the best way to get my house clean is to throw a party.  That way I at least have some motivation to get things done.

 

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One of the things that Jude said to me multiple times that morning was, “What if nobody comes to my party?”  It just broke my heart to hear this little voice of insecurity coming from my son.  That’s the kind of thing that I would worry about, but a three year old?  Where does this come from?  Jude and I were both pleasantly surprised that his party turned out to be quite the neighborhood bash.

 

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Where did we go? Darkness, Waiting, and Celebration

Where have we been?
Hello dear friends, as I’m sure you’ve figured out, when I don’t write for a while, our family is struggling.  We’ve had more sickness, but thankfully not from cancer.  When we got back from our last trip to LA, the kids welcomed us with coughs and runny noses.  They never turned into anything more than colds, but they are of course the particularly nasty kind that hangs on for weeks.  And I got sick too and was laid up for several days.  And oh yeah, Kevin managed to catch whatever the kids had, except it turned into full blown flu.
 
Super.
 
He stayed home from work one day, but pushed himself to make it in the rest of the days (because as you know, if he doesn’t work he doesn’t get paid at this point.)  Also, it’s just better for him emotionally to keep having a regular schedule and being productive whenever he can.  Have I mentioned how proud I am of that man?

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Doctor’s appointment for Evie this time

 
 
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As far as me, I have been struggling with just keeping up.  Combined with the shorter days, I have been fighting to keep depression at bay.  I have so many moments through the day that are filled with joy, and I am just loving having my kids around and being so involved in their lives.  But I also have equally as many moments in my days that are literally and figuratively filled with darkness.  I think this is the first year that I have been able to pinpoint a lot of  it to the changing of the seasons.  When I look back through my life, I can see that almost every winter, I entered seasons of struggling with feelings of overwhelm and exhaustion.  I have no idea why it took me 33 years to figure out where so much of it is coming from, but I’m grateful regardless.  I’m working hard to figure out the things I need to do to help me find an even keel and to cling to joy instead of to drown in darkness.  The biggest and most important thing is to continue recognizing my need for a savior.  I am so grateful that God loves us so much that His mercies come anew EACH morning.  And I also cling to the reminder that JOY comes in the morning.  Because mornings are often the hardest.
 
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In other news, we have two out of three of our test results back, with one out of three answers to our questions about Kevin’s health… ugh!
 
1.  Kevin has a CLEAR BRAIN SCAN!!!!!  Can I tell you how amazing this is?  To put it in perspective, if it had not come back clear, he might have been gone by Christmas.  With melanoma, that is often how fast it goes once it is in the brain.  It doesn’t mean it’s a sure death sentence, but it would have been VERY tough news.
 
2.  Kevin had a clear abdomen x-ray.  This is good, we think, but it doesn’t really provide many answers.  I think the next step is that Dr. Lawson (Emory) and Dr. Ribas (UCLA) are going to order an endoscopy, although they have said that that might not find anything either since it only scopes the upper part of the GI tract.  As long as the presence or not of cancer in Kevin’s gut doesn’t affect his treatment, I’m not sure we are going to worry too much about it either way.  But it would explain a lot of symptoms.
 
3.  We do NOT yet have the results of his biopsy, which would tell us whether or not the Anti-PD1 treatment was having tumor infiltration (i.e. potentially working).  That’s really the one we are on pins and needles about, and it’s been frustrating that we STILL don’t have news.  Kevin has his next appointment tomorrow so we are hoping we will have something to report.
 
We are currently in LA (flew in this morning) and will spend Tuesday morning at UCLA.  Then we’ll be gathering with a few friends to celebrate Kevin’s 36th birthday.  Can I tell you how incredibly grateful I am that he will be 36 on the 15th?  He has truly beaten the odds already and we cherish each and every celebration we have these days.
 
Celebrations
 
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Jude partying hard with his “street gang”
 
We have been living moment to moment a lot these days, and I am thankful that we have HUGE margins because they usually get used up every day, but huge margins pretty much means you don’t ever have anything planned in advance, your days are just wide open.  This often means that things that need planning just don’t happen.  Things like parties.
 
Pretty much every celebration we have had this year has been planned the day before AND still just barely happened (i.e. someone got sick and I very nearly had to cancel).  Often I’ve planned to have friends over for dinner and we’ve had to cancel because we had to make a trip to the hospital for fluids instead or something else like that.
 
It’s been a hard year of letting go of something that I really value… time in fellowship with family, friends, and neighbors.  I love to host parties, and gather with friends and neighbors on a regular basis.  On Halloween, we almost didn’t make it to my sister’s house for their neighborhood block party and trick or treating because Kevin was sick all day.  And even then, Kevin just wasn’t able to make it with us.  It was a struggle for me, because we’d already cancelled so many things this season, pumpkin patch outings, festivals, etc.  
 
And that is just a teeny tiny snippet of the things that haven’t happened or times when plans have gotten shot to heck and we’ve had to just call the whole day a wash.  It’s easy to get down and start counting my sorrows instead of counting my blessings in seasons like these.
 
But truly, I don’t end up feeling any better complaining and being sad.
 
And counting my blessings is a form of celebration in its own right.  
 
We’ve actually had quite a lot more celebrations than I thought this past year.  Some of them have just looked a little bit different than I thought they would.  I have been going back through my photos for the year and have discovered scads of photos of celebration.
 
And I would like to share them with you.
 
So if you don’t mind, my next post will begin a series on celebrations.  And I make absolutely NO guarantees on the regularity of said series.  Hope you enjoy and find reasons to celebrate as well.
 
Evie skips
Learning to skip is definitely reason to celebrate