The Los Angeles memorial service celebrating the life of Kevin Hill will be held on Thursday January 2nd at Village Church Burbank at 3216 W. Victory Blvd. Burbank, CA 91505 at 4:00 pm.

The Atlanta memorial service will be held on Tuesday January 21st at Trinity Anglican Church at 2270 Defoor Hills Rd NW, Atlanta, GA 30318 at 6:00 pm.

In lieu of flowers the family requests you consider making a contribution to Jude and/or Evie’s 529 plans (college/trust fund). You can visit http://hillfamilyfighters.weebly.com/bills–money.html to see several ways to contribute to the family as well as how to contribute specifically to the children’s college funds.

Many of you have known or had experiences with Kevin (throughout his life) that Rachel would like to capture.  Therefore so she has asked that friends, family and acquaintances comment below to leave any memories, antidotes, thoughts, funny stories or remembrances of Kevin so that she and the kids may have them for posterity.

Thank you for taking the time to think through or pray about your personal note and as always thank you for your love and support.

Candace here-

Immanuel came. God truly is with us in this house and also with you. 

Kevin went to be with the Lord at 3:00 am this morning (December 24th). 

We had a wonderful day with him. We let him “sleep in” yesterday morning to conserve his energy. We had a family Christmas celebration yesterday morning where Kevin came out to the chair in the living room. Rachel and the kids opened so many wonderful presents that you all had sent them and were delighted with joy. 

Kevin was able to give Rachel a hug as he was getting help getting back in bed and it was a true gift to her.

They were able to get some wonderful family pictures together.

Some old friends came by to sing and worship with Rachel and Kevin. It was beautiful.

Later a choir came by to sing Christmas hymns. That was also beautiful.

All day today we could tell that Kevin was getting closer to (as hospice puts it and we sarcastically joke) his “final journey”.

Once the house quieted down and midnight approached, Rachel crawled up in the bed next to Kevin and fell asleep.

Ashley got on one side and I got on the other and we prayed and talked to Kevin – telling him it was ok to let go and dreaming out loud of all the things he may be about to encounter.  We turned on the Trinity Worship and Prayer album and let it repeat over and over as we sang and the hours passed.

As the time grew near, an old friend of Kevin’s showed up and came in the room and joined us. We let Rachel sleep right next to Kevin until the very end. Then we woke her. He took his last breaths and we embraced Rachel and sobbed. It is over. Kevin’s suffering is over. 

I wish he could tell us what it was like – entering glory. 

I think Kevin might be on the greeting committee for each of us and I told him so.

It was the most peaceful process I have ever seen. Truly, God is with us.

Kevin is the most unique and gentle men I have ever met. I joined Rachel as she opened his “If I die” file today. That man prepared the way for his wife. His file showed his steadfastness and commitment to protect and provide for his family, but also his humor. There were many laughs as we read through it.

What a way to end the Advent season…watching and waiting for the Lord to come to a dying man- to provide relief to his body and to comfort his widowed wife and children. He is faithful to do all that He has promised.

 I hope that you will take Kevin, Rachel, Jude and Evie with you into Christmas Day. Tell their story at your dinner table. Pray for them as you spend time with your own family. Don’t forget all that God has done in their lives and will continue to do. Don’t forget them in the days to come. This new stage will be harder than ever.

Let this courageous family and their story live through you. Let this change you. I am forever changed and absolutely convinced of God’s love and faithfulness to us EVEN when things don’t go the way we want. Oh, how He loves us.

For now, goodnight. I must sleep.

I don’t know when Rachel will write, but pray for her and the kids and all of those who have lost the presence of Kevin.

Merry Christmas. Immanuel – God is with us

I stood in the aisles of Trader Joe’s, scanning the calorie counts of various foods, desperately trying to find foods that had the most calories per bite.  I was sure that my husband just needed more calories to gain his strength back.

I didn’t know that the toxins that his liver was no longer removing from his body had already built up to the point that they had taken away his appetite.

One of the store associates teased me about calorie counting, saying that I certainly didn’t look like I needed to be watching my calories.  He didn’t know that the reason I’d lost so much weight was because I’d spent the last two years helping my husband fight an exhausting battle with cancer.  And that we seemed to be losing.

Countless cross country flights we took where people were gruff with others and others extended us mercy and grace.  No one knew the weariness and exhaustion we carried in our hearts.

Friends comment on how independent our children are, and many don’t know that it’s because they have had to learn to be, having been bounced around between friends and neighbors and folks they barely knew, while I took Kevin on countless doctor’s appointments and ER trips.

When Jude and I snuck Daddy out of the hospital for lunch, we didn’t know it would be our last trip to the beach with him.   But I’m glad it was a great one.

When I wrote a post like this one, I didn’t know that my words would give a friend struggling with the pain of lupus and rheumatoid arthritis the inner strength to keep soldiering on.

When Jude squirreled away some of our hope postcards in his backpack and then dropped one of them on the floor at church, he didn’t know that the words on that card “Thank you for giving us hope” would speak words of comfort to a stranger who had stepped out of the church service and sought refuge in the ladies’ restroom.

The day I wrote the first post, “The C word”, I never knew the lengths to which Kevin and I would go to fight, the miles that we would travel, and the number of lives that our story would touch.

And last night, when I was driving down to the airport to pick up two of my best friends who have come to stand beside me as I watch my husband die, I pondered these things.  I pondered the number of people who have dug deep down into their own souls and wrestled with God in ways I can only imagine.  People who have begun to dialogue with God and ask Him the tough questions, like why the hell is this happening.  And knowing that God can more than handle it and that He is overjoyed to be hearing from His precious children.

I thought about the doctors and nurses and caregivers who wept as they watched our children, dressed in their tiny scrubs, crawl up onto a hospital bed to snuggle with their father, and went home thinking about how our children were neither sorrowful nor afraid, and how could that be.

I thought about all the ways that God has stretched and grown Kevin and me, and the ways that He has instilled an amazing compassion and empathy in our children.  I thought about all the ways that God has stirred the hearts of so many to provide for our little family in truly supernatural ways, and the people who have watched it all and shaken their heads, trying to make sense of it all.  I thought of the people who have begun again to speak to the One who created them and loves them beyond all imagination, if even only to yell at him and hurl rocks and cry out to Him “Why?!”  And how God can take it ALL and is wrapping His arms around them whether they believe in Him or not.

I thought of how surprised Kevin will be at how packed the church will be when we gather to celebrate his memory, both here and in Atlanta, and for the thousands upon thousands of people who have been touched by his life and his story.

I thought about our sorrow that our children will grow up without a father, but already see how their pain connects them with the greater suffering of the world and how their joy and perspective will be a source of light in my life.

I thought on all of these things, and for a moment, just maybe even a second, I saw it from God’s perspective and I thought,

“It’s a fair trade.”

Kevin loves to play poker, and was always talking about how it’s not a game of chance (he hates games of chance).  He would always tell me, “Why would the same people be at the world poker championships every year.”  He said it’s about playing the hand you’re dealt as well as you possibly can.  So I tried to find a good poker metaphor to wrap this up.

“Life is not always a matter of holding good cards, but sometimes playing a poor hand well.”  -Jack London

I will never say that Kevin’s death is God’s will.  This was NEVER the way it was supposed to be.  And why it’s happening and how God can be all good and all powerful and still not stop this is a mystery that many of us will grapple with for years to come, myself included.

But.

I do believe… that NONE of this is a surprise to God.  It was not just luck or chance.  God may have not dealt Kevin and me this hand, but he knew exactly which cards we would receive.

We did our best, we played a shitty hand as well as we could.

As I watch my husband decline, and see already how pieces of him have left this earthly place, I am finally ready to think back on Job.  Many have compared our trials to those of Job’s, especially when so many crazy things have happened, like trees falling on our house and stuff.  Both Kevin and I took that reference very seriously though, and would never be willing to make that comparison.  Go back and read the story of Job and ALL the suffering that he endured, and you’ll understand why we would constantly say that this doesn’t even compare.  And yet, the words of Job come to mind as I see my husband no longer able to care for his bodily functions, no longer able to communicate verbally, sleeping off and on for short amounts of time, but greater amounts overall, much like a newborn.

I think of Job as he tore his clothing and shaved his head and dropped to his knees.

“Naked I came from my mother’s wound, and naked I shall return.  Blessed be the name of the Lord.”

Is the Lord’s name blessed?  Do I feel that?  Do I truly believe it?  I don’t know right now.  I know that I will miss my husband so terribly and that, while I feel peace and surrender today, there will be many many moments where I feel I cannot even breathe.  And even more when those very words will cause me to hurl obscenities at God for allowing me to endure such pain.

At Kevin’s uncle’s funeral, his cousin played the song, “The Gambler”  I know it may not make sense to many, but Kevin would probably agree with me that it’s a fitting end to this rambling post.

On a warm summer’s evenin’ on a train bound for nowhere,
I met up with the gambler; we were both too tired to sleep.
So we took turns a starin’ out the window at the darkness
‘Til boredom overtook us, and he began to speak.

He said, “Son, I’ve made my life out of readin’ people’s faces,
And knowin’ what their cards were by the way they held their eyes.
So if you don’t mind my sayin’, I can see you’re out of aces.
For a taste of your whiskey I’ll give you some advice.”

So I handed him my bottle and he drank down my last swallow.
Then he bummed a cigarette and asked me for a light.
And the night got deathly quiet, and his face lost all expression.
Said, “If you’re gonna play the game, boy, ya gotta learn to play it right.

You got to know when to hold ’em, know when to fold ’em,
Know when to walk away and know when to run.
You never count your money when you’re sittin’ at the table.
There’ll be time enough for countin’ when the dealin’s done.

Now Ev’ry gambler knows that the secret to survivin’
Is knowin’ what to throw away and knowing what to keep.
‘Cause ev’ry hand’s a winner and ev’ry hand’s a loser,
And the best that you can hope for is to die in your sleep.”

So when he’d finished speakin’, he turned back towards the window,
Crushed out his cigarette and faded off to sleep.
And somewhere in the darkness the gambler, he broke even.
But in his final words I found an ace that I could keep.

You got to know when to hold ’em, know when to fold ’em,
Know when to walk away and know when to run.
You never count your money when you’re sittin’ at the table.
There’ll be time enough for countin’ when the dealin’s done.

Fuck it dude, let’s go bowling.

I stood in the aisles of Trader Joe’s, scanning the calorie counts of various foods, desperately trying to find foods that had the most calories per bite.  I was sure that my husband just needed more calories to gain his strength back.

I didn’t know that the toxins that his liver were no longer removing from his body had already built up to the point that they had taken away his appetite.

One of the store associates teased me about calorie counting, saying that I certainly didn’t look like I needed to be watching my calories.  He didn’t know that the reason I’d lost so much weight was because I’d spent the last two years helping my husband fight an exhausting battle with cancer.  And that we seemed to be losing.

Countless cross country flights we tookwhere people were gruff with others and others extended us mercy and grace.  No one knew the weariness and exhaustion we carried in our heart.

Friends comment on how independent our children are, and many don’t know that it’s because they have had to learn to be, having been bounced around between friends and neighbors and folks they barely knew, while I took Kevin on countless doctor’s appointments and ER trips.

When Jude and I snuck Daddy out of the hospital for lunch, we didn’t know it would be our last trip to the beach with him.   But I’m glad it was a great one.

When I wrote a post like this one, I didn’t know that my words would give a friend struggling with the pain of lupus and rheumatoid arthritis the inner strength to keep soldiering on.

When Jude squirreled away some of our hope postcards in his backpack and then dropped on of them on the floor at church, he didn’t know that the words on that card “Thank you for giving us hope” would speak words of comfort to a stranger who had stepped out of the church service and sought refuge in the ladies’ restroom.

The day I wrote the first post, “The C word”, I never knew the lengths to which Kevin and I would go to fight, the miles that we would travel, and the number of lives that our story would touch.

And last night, when I was driving down to the airport to pick up two of my best friends who have come to stand beside me as I watch my husband die, I pondered these things.  I pondered the number of people who have dug deep down into their own souls and wrestled with God in ways I can only imagine.  People who have begun to dialogue with God and ask Him the tough questions, like why the hell is this happening.  And knowing that God can more than handle it and that He is overjoyed to be hearing from His precious children.

I thought about the doctors and nurses and caregivers who wept as they watched our children, dressed in their tiny scrubs, crawl up onto a hospital bed to snuggle with their father, and went home thinking about how our children were neither sorrowful nor afraid, and how could that be.

I thought about all the ways that God has stretched and grown Kevin and me, and the ways that He has instilled an amazing compassion and empathy in our children.  I thought about all the ways that God has stirred the hearts of so many to provide for our little family in truly supernatural ways, and the people who have watched it all and shaken their heads, trying to make sense of it all.  I thought of the people who have begun again to speak to the One who created them and loves them beyond all imagination, if even only to yell at him and hurl rocks and cry out to Him “Why?!”  And how God can take it ALL and is wrapping His arms around them whether they believe in Him or not.

I thought of how surprised Kevin will be at how packed the church will be when we gather to celebrate his memory, both here and in Atlanta, and for the thousands upon thousands of people who have been touched by his life and his story.

I thought about our sorrow that our children will grow up without a father, but already see how their pain connects them with the greater suffering of the world and how their joy and perspective will be a source of light in my life.

I thought on all of these things, and for a moment, just maybe even a second, I saw it from God’s perspective and I thought,

“It’s a fair trade.”

Kevin loves to play poker, and was always talking about how it’s not a game of chance (he hates games of chance).  He would always tell me, “Why would the same people be at the world poker championships every year.”  He said it’s about playing the hand you’re dealt as well as you possibly can.  So I tried to find a good poker metaphor to wrap this up.

“Life is not always a matter of holding good cards, but sometimes playing a poor hand well.”  -Jack London

I will never say that Kevin’s death is God’s will.  This was NEVER the way it was supposed to be.  And why it’s happening and how God can be all good and all powerful and still not stop this is a mystery that many of us will grapple with for years to come, myself included.

But.

I do believe… that NONE of this is a surprise to God.  It was not just luck or chance.  God may have not dealt Kevin and me this hand, but he knew exactly which cards we would receive.

We did our best, we played a shitty hand as well as we could.

As I watch my husband decline, and see already how pieces of him have left this earthly place, I am finally ready to think back on Job.  Many have compared our trials to those of Job’s, especially when so many crazy things have happened, like trees falling on our house and stuff.  Both Kevin and I took that reference very seriously though, and would never be willing to make that comparison.  Go back and read the story of Job and ALL the suffering that he endured, and you’ll understand why we would constantly say that this doesn’t even compare.  And yet, the words of Job come to mind as I see my husband no longer able to care for his bodily functions, no longer able to communicate verbally, sleeping off and on for short amounts of time, but greater amounts overall, much like a newborn.

I think of Job as he tore his clothing and shaved his head and dropped to his knees.

“Naked I came from my mother’s wound, and naked I shall return.  Blessed be the name of the Lord.”

Is the Lord’s name blessed?  Do I feel that?  Do I truly believe it?  I don’t know right now.  I know that I will miss my husband so terribly and that, while I feel peace and surrender today, there will be many many moments where I feel I cannot even breathe.  And even more when those very words will cause me to hurl obscenities at God for allowing me to endure such pain.

At Kevin’s uncle’s funeral, his cousin played the song, “The Gambler”  I know it may not make sense to many, but Kevin would probably agree with me that it’s a fitting end to this rambling post.

On a warm summer’s evenin’ on a train bound for nowhere,
I met up with the gambler; we were both too tired to sleep.
So we took turns a starin’ out the window at the darkness
‘Til boredom overtook us, and he began to speak.

He said, “Son, I’ve made my life out of readin’ people’s faces,
And knowin’ what their cards were by the way they held their eyes.
So if you don’t mind my sayin’, I can see you’re out of aces.
For a taste of your whiskey I’ll give you some advice.”

So I handed him my bottle and he drank down my last swallow.
Then he bummed a cigarette and asked me for a light.
And the night got deathly quiet, and his face lost all expression.
Said, “If you’re gonna play the game, boy, ya gotta learn to play it right.

You got to know when to hold ’em, know when to fold ’em,
Know when to walk away and know when to run.
You never count your money when you’re sittin’ at the table.
There’ll be time enough for countin’ when the dealin’s done.

Now Ev’ry gambler knows that the secret to survivin’
Is knowin’ what to throw away and knowing what to keep.
‘Cause ev’ry hand’s a winner and ev’ry hand’s a loser,
And the best that you can hope for is to die in your sleep.”

So when he’d finished speakin’, he turned back towards the window,
Crushed out his cigarette and faded off to sleep.
And somewhere in the darkness the gambler, he broke even.
But in his final words I found an ace that I could keep.

You got to know when to hold ’em, know when to fold ’em,
Know when to walk away and know when to run.
You never count your money when you’re sittin’ at the table.
There’ll be time enough for countin’ when the dealin’s done.

Fuck it dude, let’s go bowling.

Kevin was released from the hospital yesterday afternoon and took a ride on an ambulance all the way home.  He arrived in very high spirits and was thrilled to be in his own place and in his new hospital bed.  We enjoyed a very busy evening of friends and family all around. Jude and Evie opened a few very special presents and Kevin was physically and mentally more present than he has been in days.  It was such a blessing.  But we knew not to expect that to last.  Over a few hours the friends and family trickled out and I tucked Rachel and Kevin into bed.  Kevin had a restless night with a few stretches of sleep.  His awareness and cognitive abilities began to wane almost immediately once everyone went home.  I was able to care for his needs fairly well on my own, but I could tell that would come to an end soon as he was becoming less stable and less strong.

In the morning, Rachel climbed into bed with me and said, “I know we haven’t talked about this, but you are not allowed to stay here for Christmas.  You have to go home, be with your family and get some rest.” She knew that I was questioning if I should stay and that if I stayed or went home it would be a difficult choice. So, again, she gave me grace and decided for me.

It was then that it hit us, I was leaving tomorrow morning, and she HAD to have help. Rachel has cared for her husband for over 2 years during their journey of treatment.  She has watched him fight a very hard battle and fought alongside him. And now she is watching him slowly diminish and some day soon, go home to be with the Lord.  She simply can not stay up all night and care for his needs. She can not walk him to the bathroom, change his sheets, alter his pillow placement, get him beverages, help him eat – all while grieving.  It is beyond difficult to watch him slowly go – she simply can not manage that care as well.  And honestly, I can’t bear the thought of her having to do so.

Rachel is asking for your help.  The help we need, especially at night, is for someone to be here at the house to tend to Kevin’s needs and allow him (and her) dignity to manage through the next few days or weeks – however much time the Lord grants him.  Kevin is 6″, so our preference is a strong person who can help him get in and out of bed and walk to and from the bathroom (so long as he is able).

If you can take a shift (2 hours, 8 hours, whatever you can do) or know someone who can, contact Sarah Thomas to volunteer and we will add you to the schedule.  Dates are now through the evening of 12/26.  You can contact Sarah via  Facebook at https://www.facebook.com/mrs.sarah.thomas.

This will not be an easy task.  Cognitively Kevin is aware and able to respond about 10 – 20% of the time and while he can walk, he is somewhat unstable.  This is a HUGE request, we know that, and we hope there are some of you who can be here for Rachel and Kevin in one of he hardest moments you can imagine.

Again, thank you all for your love, compassion and support.

Rachel here. Thank you all so much for your continued prayers and support.

I just still can’t believe this is happening. It’s so horrible and so surreal at the same time. The docs said that at least liver failure is a peaceful way to go, you just get more and more dreamy and sleepy. Still, I’m honestly terrified of what will happen next.

I was not prepared for the cognitive decline caused by the liver (hepatic encephalopathy). And in his moments of clarity, he still says he wants to fight! So what do you do?

I still pray for a miracle. I still believe God could work one. But He’s not.

I honestly can’t do anymore of this getting my hopes up though. It’s just too hard on my heart.

Docs said it could be a matter of days or a couple of weeks. I’m praying so hard now it goes quickly and please Lord, don’t let him die on Christmas or Evie’s birthday (1/1). I don’t know, I just don’t know.

So normally I would conclude this post with something encouraging about how we are still trusting and leaning on Him. But honestly, I’m just constantly telling my brain to stop thinking about it when I’m trying to think and rest. It’s happening. Whether I think about it or not. And that’s already more than I can handle. God? Is there still a miracle coming? You’re breaking my heart here.

Today was one of those surreal days that you’re not really sure happened. It was fuzzy around the edges with harsh hard moments and little soft ones thrown in.  But, today did happen. It happened, and we have to figure out how to move forward. Move forward with hope, because that is what we are promised.

This hope we have as an anchor of the soul, a hope both sure and steadfast” ~Hebrews 6:29

Find peace, because that is what was given to us.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. ~ John 14:27

On Thursday morning the doctor used an ultrasound to identify and locate fluid that had accumulated around Kevin’s right lung, liver and spleen. They found a good bit around his lung, however when they moved to the abdomen, they found no fluid. Kevin’s distended belly is being caused by an enlarged liver and spleen, not an accumulation of fluids as we had thought.  They went ahead with the fluid removal around his lung and he was able to get a good bit of relief right away. His shortness of breath improved and he seemed to rest easier.  However, when we got the labs back that day, his bilirubin levels continued to rise.  Kevin’s cognitive abilities continued to be affected by the liver levels so the doctor ordered a drug that is designed to help the body rid itself of those toxins.  It’s hard to tell if it has worked.

Rachel went into research mode to see if there were any other options to help his liver improve, but after many phone calls, emails, a few consultations and a lot of conversations, none of those options make sense for Kevin.

That night one of Kevin’s closest friends, Ian, spent the night with him in the hospital.  My hope was that, given how much time Kevin had spent awake Thursday that he would sleep well that night. Unfortunately he did not.  Kevin experienced another night of discomfort, frustration and mild confusion – but at least he had his best buddy there to see him through.

I spent the evening at Kevin’s cousin Claudia’s house who lives close to the hospital. She kindly made me dinner and a poured me glass of wine. I helped her decorate her Christmas tree and she and I shared the evening with her dog Jack and sweet kitty, Bob. In the morning her kind husband, Larry, drove me back to the hospital at 6:00 am to relieve Ian so he could go to work.

I spent the morning with Kevin, asking the doctors about pain meds, ordering food and attempting to get him to eat, calling the care team to help him with tasks like turning in the bed, going to the restroom, etc.  I could tell he wasn’t feeling better. His pain level seemed to have increased and his awareness level decreased.  His shortness of breath had returned, as a result of his diaphragm being raised by his enlarged organs.  And he wanted out.  He asked the nurse and I several times when he would discharged. A physical therapist arrived and helped Kevin realize just how strong he really is – which honestly impressed us both. He has a strong body and a strong will.  (Told ya, that man is a BEAST!)

Rachel spent the morning meeting up with Kevin’s cousins who had come into town and then headed to the hospital as soon as they got off the plane.  She was making phone calls to doctors and continuing to gather as much data as possible to make the decisions regarding the next steps in Kevin’s care.

The decision she has come to, for now, barring new information tomorrow, is to bring Kevin home to their sweet little rental house with hospice coming in to help. He will continue his IV antibiotics as well as his current cancer drug debrafinib.  In addition they will add back the MEK inhibitor.  These are the only two drugs that Kevin’s liver can tolerate and therefore have a chance of reducing his tumors and possibly the burden on his liver. When Rachel described this to me she said, “I’d like to say that I have an ace left up my sleeve, but really it’s a two of clubs.  Not much, but hey, it’s a two of clubs.”

Now, at the end of the day, as Rachel arrived home and the cousins said good bye. She and I briefly processed what was happening.  She was so tired, she didn’t have the energy to talk, and she really didn’t want me to talk either. So we hugged and cried instead.  It is moments like these that this is all so hard to absorb let alone understand.

She cried, “Where is our miracle?! You know!  I mean, aren’t you thinking that?”  I replied “I’d kinda hoped I’d be it. That I’d come out here and you and I were convinced we could help him get better. I even said on Monday morning that I was really convinced he can DO this – he’s fine. But by Monday afternoon – he wasn’t.  I feel like somehow I failed you, or him.” She said, “Sarah, if you were in that conversation with the oncologist and I today, you wouldn’t feel that way. We did everything we could.”

And there it was.  A wife making some of the hardest decisions of her life, extending me grace.  On what might be one of her darkest evenings, when I selfishly poured out my feelings of guilt and whiny inadequacies to her, she simply gave me grace. I got her a glass of water and left her to sleep. She had done everything she could to pour out herself – mind, body and soul – for her love for years. She would continue to. And she was exhausted, but she gave me grace.

Tomorrow we will work out details and hopefully Kevin will come home. Tomorrow we will continue to wait. And hope.

But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.

Sorry for the bit of quiet for the last 24 hours. Things keep going up and down, and up and down again – it keeps us busy figuring out what’s the next best step and spending time with the Lord allowing Him to remind us to trust in Him in each step.

On Monday, Kevin went to the Interventional Radiologist to have his liver/bilirubin drain looked at as it had been leaking. While waiting for the IR doctor, he received blood and platelets. Unfortunately during that same time, Kevin began to experience somewhat slurred speech and mild difficulty breathing. We weren’t sure what to make of it other than he must be ridiculously tired.

The IR doctor/surgeon met with Rachel and Kevin prior to the procedure and said he would take a look around while he was in there and see what he could do to reduce the burden on the liver (fluid and/or bilirubin drainage). While he was in there, he did just that. He took a look at the second stent he put into one of Kevin’s biliary ducts and found that the cancer had grown through it (it is a mesh stent) and was no longer helping drain bilirubin. So he put it a larger tube in the drain and ran it through the mesh stent so that now the liver should be draining very well with no chance that the cancer could re-block that particular area. That man is a God-send.

We were thrilled with this news as it would make it possible, should his bilirubin levels go down, the liver would shrink and begin to perform better, possibly well enough to try surgery or some other cancer intervention to continue to improve the liver function enough to get him on a new drug or trial.

In recovery after the procedure Kevin’s blood pressure dropped rather suddenly indicating he might have another infection. The doctors decided to keep him over night in the hospital. So Eric and I, who had joined Rachel at the hospital to see how we could be helpful, headed home. On Tuesday, when I woke the internet at Rachel and Kevin’s house had stopped working so all I had left to do was clean and organize and await the delivery of the new hospital bed that would make life at home for Kevin much more enjoyable. The bed arrived and was set up and Lila picked me up for a lunch date. After wards, we went over to their house to open all the boxes that had arrived for Rachel and Kevin in the last 24 hours. Seems that you amazing people decided you were going purchase just about every little thing we had listed on those registries and you blew us out of the water with your generosity! More and more packages arrive each day. Lila and I are enjoying wrapping the items for the kids and I take back to the Hill house the home and health care items to better take care of the house and Rae and Kevin.

Rachel spent the day with Kevin at the hospital where he slept the majority of the day but ate fairly well. That afternoon/evening I came to the hospital to relieve Kevin’s friends who had come to spend some time with Kevin. While Rachel got some much needed sleep at the Vornbrocks with her Wee Ones, I settled in for a quiet evening hanging out and keeping an eye on Kevin as he peacefully slept and recovered.

But that is not at all what happened. He was awake, fairly uncomfortable and ill-at-ease the entire night. The nurses and I attempted to help him be more comfortable to little avail. He was irritable at what he perceived to be sub par care from the nurses and he was somewhat scared by the symptoms he was feeling. In the morning he ate a good bit and awaited Rachel’s arrival. When Rachel arrived with Evie (who is a wonderful, sweet distraction) the doctor began to explain what was going on and making Kevin so uncomfortable the night before. He had accumulated fluid around his liver, spleen and right lung as a result of the IV fluids, red blood and platelets that Kevin has received – all of which was causing shortness of breath, chest pain, and general miserableness. He had acquired a staph infection during the IR procedure (so add that to the other infections he has), his platelets continue to be low and his bilirubin is going up rather than down. AND somehow in the transfer into hospital care his regular pain medication had been removed. He hadn’t had his regular 12-hour slow release pain meds in 32 hours! (I have to say, I would have been MUCH less kind and polite than Kevin was. He really is one amazing guy. He keeps pushing through to eat, to fight for his wife. It’s one of those marriages, well… I suppose many folks don’t see marriages like theirs but in the movies, but it’s that incredible. That strong. Their loyalty and dedication to the Lord and each other. It’s awe inspiring. ) But I digress.

Rachel got right on it. She asked (politely demanded) for compression socks to be put back on his legs, to reinstate his pain meds, get a physical therapist to him so he could take a walk and relieve some of the back pain, get a swallow study done to figure out how to keep him from swallowing fluid into his lungs rather than his stomach, and schedule a dressing change for his facial tumor. She may be exhausted but she is still one tenacious lady.

Kevin spent the day with Rachel and Eric while I ran some errands for her then went to the Vornbrocks for lunch, more Amazon box opening from you generous people, and to play with the kiddos. Paul kindly took the car for an oil change while I got all of that done. Then, I headed back to the house to organize, clean, change sheets, take a bath, drink a glass of wine and write this post. Needless to say I am thrilled I can put together complete sentences given that I haven’t slept in the past 24 hours. But I’d do it again in a heartbeat. Kevin was so appreciative to have me there – he even apologized for keeping me up! One heck of a guy.

Rachel is sleeping at cousin Claudia’s tonight – who is very close to the hospital and Eric is spending the night in that tiny hospital recliner chair (I would LOVE to see a pic of that 6” 4’ dude in that itty bitty chair). Then tomorrow morning Kevin will receive more platelets and the doctor will perform a procedure to remove the fluid from outside of his lung, spleen and liver. The hope is that his bilirubin will start to go down soon. Then with the IR procedure done on Monday and the procedure scheduled tomorrow he should begin to feel better. And with the hard core antibiotics he is getting at the hospital, hopefully begin to heal. The doctor expects a discharge of Friday or Saturday and we hope to admit Kevin to a skilled nursing facility closer to their home for a week or so, to ensure Kevin has round the clock, high quality care so he can keep improving and getting better. There are a lot of ‘ifs’ still and the direction this could go is still very unclear. Eric describes it as “being on a knife blade” awaiting His will, timing and grace.

Thank you all so so much for your generosity – to my husband and I (wrapping our Christmas presents, baby-sitting our kids and doing our laundry – Y’all are amazing!) and to my sister and brother and their two ridiculously adorable kids. We are so blessed that God brought you to this blog and into the Hill’s lives. Please pray that Kevin would begin to feel better. As you can imagine, a Christmas with him feeling pretty decent would be so wonderful. Pray that our hope for a recovery for Kevin is well founded. But if He chooses to take Kevin down a path of ultimate healing that Kevin would experience a grace-filled, pain-less journey home to be with his Heavenly Father. Pray too that God’s direction and will would be crystal clear to Rachel allowing her the emotional, physical and spiritual peace He promises us in scripture.

This is a hard post to write. So forgive me if it lacks cohesiveness.

Over the last few days Kevin was showing several signs that he was very slowly improving. He was eating more, staying awake more, a bit more conversational, stronger too.  So, this morning when he said he wasn’t feeling well and wanted to go to the doctor sooner than their scheduled 10:00 am appointment, I wasn’t overly worried.

Unfortunately, when they went to his oncologist’s office to have his blood levels tested, the news was not what we had expected. While his hemoglobin (red blood cells) and white blood cells were slightly improved from Friday, his platelets were worse.  His docs believe that Kevin’s platelets are not likely to recover as his liver continues to struggle (which is causing his spleen to be enlarged) and doesn’t appear to be recovering function.  They have made it clear that from their perspective, there are no treatment options remaining, and that he is likely to continue needing platelet transfusions.

Rachel and Kevin talked in depth about this news, what it really meant, and what to do from here. They decided to go ahead with the planned interventional radiology procedure to replace his leaking drain (again!) and to also ask the I/R doctor to see if he could do anything else to help while he was in there.  He will possibly perform a paracentesis procedure to drain off some of the excess fluid that has been building up in his abdomen and causing discomfort, trouble breathing, and loss of appetite.  Their oncology team said this procedure would not help liver function at all, but the I/R doctor said that it could.  He’s also going to have a look at the spleen and see what’s going on.

For now, the plan remains the same:  Keep checking labs and getting platelets when needed, and then continue with trying to get him to eat as much as possible, rest as much as possible and pray that the Lord grants them a miracle – either to heal him or to bring him Home as quickly and painlessly as possible.

There’s many many more details surrounding all of this but either they are too confusing or they aren’t really relevant.  Rachel is doing better than she or I expected.  They’ve known the poor prognosis from the beginning, and have had two years to prepare for this.  But can you ever really be prepared?

I’m doing about how I expected.  We are both ok.  God (and our parents) made us problem solvers / trouble shooters / planners so we are busying ourselves in the necessary details. It helps us cope, and feel helpful and useful – its one of the many amazing traits my sister possesses that has allowed her to support and help and in some cases save Kevin over the last 2 years.  Even as I write this, she is emailing his other doctors that he has seen across the country to see if any of them have any ideas.

For those who don’t know her – she is a ball of determination and passionate love for her husband and the Lord.  She is smart, funny, resourceful and very transparent. All of which makes reading her writings so poignant, and funny and honest.  I know that regardless of the direction their path takes, the Lord will use these traits and the ways He made her to carry her through.

Please pray.  There are always the ‘ifs’ in every situation, and God can use one of those to make a way for Kevin to recover. And then, of course, the Lord is a God of miracles and should He choose to, He can miraculously heal Kevin as well.  But if He chooses not to heal Kevin this side of heaven, we pray he makes this as painless and quick as possible.  Pray y’all. Please Lord, have mercy.

Kevin continues to slowly improve. He is sleeping less during the day, eating more and even occasionally cracking  jokes.  I’m tickled pink to watch the improvements. He still has several symptoms from the pneumonia, thrush and shingles he is trying to shake as well as some uncomfortable symptoms that come from liver function issues.  We are making good progress on the thrush and shingles and hope to make some strides on the liver symptoms tomorrow.

Now that I’ve been here for a few days and had the chance to get into a routine with Rachel and Kevin, I’d like to answer the question that several of you amazingly generous people have asked: “How can I help?”

I’ve organized and edited Rachel and Kevin’s Wish Lists on Amazon and identified items they need and in some cases would just like. If you’d like to buy something for Jude and Evie for Christmas, or help with some of the medical supplies Kevin needs, or purchase some home items so that we can better care for the house below are links to those specific lists.

• Presents for Jude and Evie
• Gifts for Kevin
• Medical Supplies for Kevin
• Home Items Wish List

As always, thank you so very much for your prayers, love and support. Kevin and Rachel REALLY wouldn’t have made it this far without the AWESOME community of people that have rallied around them and their family.  In Sarah-speak “Y’all ROCK!”.