Holding Steady

I talked with Rachel this afternoon. She says she and Kevin are both doing well but she doesn’t have enough energy to write a blog post herself – being that witty and amusing takes energy people.

So, you’ll have to make do with me for a bit longer – Here is the latest:
Kevin’s liver enzymes are normal. Let me say that again. His liver enzyme levels are NORMAL.  (Praise the LORD!) Also, it appears the ERCT (bile duct shunt insertion) worked! as his bilirubin levels have come down by half.  For now there is no further discussion regarding the removal of the second bile duct blockage as the doctors believe that his bilirubin levels should continue to fall on their own.  The doctors have taken Kevin off of one of the antibiotics but he remains on one other.  His fevers have improved and the doctors feel the infection was a result of the build up in his bile duct.  They also continue to give him Neupogen shots to help his immune system create white blood cells as the chemo suppressed his immune system. He is no longer neutropenic and the doctors plan to continue to monitor him for a few more days.

Rachel and Kevin had a consultation with a wound care specialist to assist them in caring for Kevin’s external tumors as they (hopefully) continue to shrink and break down.  Kevin’s external tumors DO appear to be softening and breaking down but that is subjective and not backed up by any test or scan. Also, because Kevin’s liver levels recovered so quickly, the doctors firmly believe the chemo has shrunken the tumors surrounding his liver.

Given how well Kevin is doing, Rachel hopes for a discharge date of Saturday.  Their apartment should be ready for them to move into by Monday or Tuesday at which point Rachel will be able to gather together all the donations/gifts that have been sent in, so she can determine what, if any, additional needs they will have. In addition, once they are settled into the apartment, some friends in LA will set up a meal calendar so that local friends and supporters can provide prepared dinners and those less local can pay for groceries or have food delivered by a third party provider (a list of suggested services will be provided).

Jude and Evie have begun to struggle a bit missing Mommy and Daddy so Rachel will travel to the valley tomorrow to spend Halloween with Jude and Evie and Grammy Lila and Grampa Paul. She will then bring Jude and Evie with her back to the UCLA area and stay with Cousin Claudia, who has a place nearby, until they can move into their apartment, hopefully at the beginning of next week.

So that’s it folks.  Y’all know what to do… please pray that the chemo keeps working to reduce his tumors, that his bilirubin levels continue to drop, and that his heart begins to heal so that he can be strong enough to start on a new trial, once he finishes chemo.  Let’s also spend time in thanksgiving for the miraculous turn around Kevin experienced. What a blessing to be able to watch God intervene and bring Kevin back from the ‘edge’ once again!

Thank you all so very much for lifting up Brother Kevin and the Hill Family! We are all so blessed by your continued love and support!

Praises

Sarah here. Rachel texted this afternoon.

“Kevin’s fever has been high over the weekend but not bothering him… 102.  He couldn’t do Tylenol because it is so hard on the liver.  He had ice packs and a cooling blanket last night which didn’t really help with fever but just made him uncomfortable and kept him up all night.

Praise God!  After sloooowly inching down, his liver enzymes have dropped substantially, almost to normal levels.  This means the chemo and our prayers worked!

However, his bilirubin continues to climb dangerously… He looks as yellow as an oompah loompah!  They will perform an ERCP (insert a shunt to remove the blockage in his bile duct) today and is scheduled for 3pm, but could happen sooner.  They feel confident they will be able to clear the blockage and numbers will all come down very quickly.

This morning Rachel cleaned and dressed his tumors on his face and it appears that they are starting to break down which is also a BIG praise.  Kevin experienced sudden anemia (low red blood cells/iron count) and they are not sure the cause.  He received an infusion of red blood cells.  The doctors feel that it’s not the big concern for now.  He feels pretty rough, naturally but is able to rest today and is trying to catch up on some sleep.”

Amazing and fantastic news indeed!  Let us all shout with praise to God!  Please join us is giving thanks and praise as well as continuing to ask for God’s intervention – that Kevin’s surgery would go without a hitch, that his billirubin levels would lower quickly and that the chemo would continue to work to break down the cancer cells.

I am jumping for joy with gratitude today!

It’s the little things

Sarah here. Rachel called me this evening with Kevin’s news.

Rachel and kevin

First the Liver Update:
Kevin’s liver levels haven’t come down by much – they are essentially stable, but high.  He also has a sustained fever of around 100. The GI specialist had a consult with Rachel and Kevin telling them Kevin’s doctors were going to wait until Monday to insert the bile duct stent as this procedure is complicated by the tumors and they want to bring in the specialist to do it – who isn’t available until Monday.  However he assured Rachel, after much questioning (she’s a great patient advocate for her man) that while his levels are elevated he is not in eminent danger of liver failure and that waiting until Monday will not harm him.

Bandadge

The Cancer Update:
Kevin continues to take the BRAF inhibitor, dabrafenib, every 12 hours and is also on an antibiotic as a prophylactic in hopes it will help with the fever, although the doctors do not detect any infection.  His nausea is under control with medication, which makes him quite tired, but he gets little rest as he is constantly interrupted by medical professionals taking his vitals, blood samples for labs, etc. While the doctors are focusing on his liver for now, assuming that his lever levels are under control within 3 weeks, he will have his next chemo treatment.  If he is well sooner, there is the possibility of a second dose sooner.  For now, his doctors will leave him on the originally determined schedule of one dose every three weeks.

Kevin’s back hurts due to the terrible support that comes with hospital beds but he is relatively comfortable. They are spending their time praying and listening to sermons that bring them comfort. Jude and Evie, who are staying with Paul and Lila Vornbrock (the children’s adopted grandparents) about an hour away, will be visiting them tonight – which is always a joy and encouragement to Kevin and Rachel.

The Little Things
There are a few small bright spots and blessings – the hospital has moved Kevin to a private room!

Private Room Pic

This makes a HUGE difference in quality of life when experiencing an extended hospital stay.

Private Room Pic2

 

Also Kevin is enjoying his new Fight Club poster, courtesy of friends Justin and Michelle Vogel.

FightClubPoster

Finally, Rachel and Kevin snuck out of the hospital night before last to enjoy a small date night at the local California Pizza Kitchen, a most welcome and needed break from hospital life, and a sweet time together.

CPK Pic 2

 

Kevin’s cousin Claudia who lives nearby accompanied them.
CPK Pic 1

Prayer Request:
We ask that you continue to pray. Pray for more energy for Kevin to be able to take walks and relieve some of the back discomfort.  Pray that Kevin’s liver levels and fever will go down and that they can get out of the hospital soon – they were not prepared for a long hospital stay when he was first admitted.  Please pray for their spirits to be lifted and for emotional and spiritual peace.  And finally, please pray that God would grant Kevin healing and more time with his sweet family this side of heaven.

Update

Here’s the latest. and no I’m not converting to Judaism.


Here’s the update if you can’t see the video.
Ultrousound did not find any obstructions, but a special liver MRI was done also
That Liver MRI DID show a bile duckt blockage which is treatble. The plan for now
is to continue with the chemo to try to reduce the tumor without having to install a stesnt.

In the morning…

Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I lift up my soul. ~ Psalm 143:8 ESV

Sarah here.

Rachel texted me this morning.  Kevin slept through the infusion and made it through the chemo last night.  Rachel stayed with him all night and prayed as they took labs at 4:00 am.,  “I prayed for a miracle. Prayed for my own liver to absorb his toxins, for me to take on his pain so that he might live.  In that moment I understood Christ.  It suddenly made more sense than it ever has. Christ’s sacrifice was perfectly reasonable considering how immeasurably he loves us.  He didn’t even give it a second thought.”

His vitals are fine so far and they will hear the results of the labs in a few hours. Kevin is still sleeping and Rachel went to a friends home close by to eat breakfast and take a shower.  She will be back with him in an hour or so.  She is exhausted.  Please pray.

Jesus is our running back

This is a hard one to write.

The results of yesterday’s ultrasound showed no blockage in Kevin’s biliary ducts that could be corrected.

The consensus is that his elevated liver levels are caused by tumor burden alone.  The only way to help his liver right now is to reduce the tumor burden.  And the only thing we have left to try to do that is this chemo, which is toxic to his liver.

So you can see our dilemma.

The doctors are going to reduce the dose of the chemo to attempt to find the best compromise between liver toxicity and efficacy in killing off the cancer cells.  Thankfully, this chemo is actually pretty targeted, but it is still a risk.

But right now his levels are elevated to the point that we do not have an option to wait.  These levels are toxic.

One small blessing is that his levels are about the same today as they were yesterday, instead of continuing to spike.  But it’s really too small of a data set to know if they have actually stabilized.

Kevin will receive the chemo sometime this evening.  We will let everyone know when he starts, and anyone who is able, please consider fasting and praying during the time of his infusion.  It will be over the course of about 5 hours.  The liver toxicity could be immediate or could happen over the next couple of days.  We need all of you to stand in the gap for us.

Kevin will most likely remain inpatient until they feel his levels are stable or that the drug did not work and then send us home.  Melanoma is not a very chemo-responsive cancer, so this was already a last ditch attempt.  Now with the added liver issues, we are really just crying and begging and pleading for God to work His miracles.

But we know that God can do it.  A dear friend shared the following verse with us from 1st Corinthians 1:8-10.  I made it into a giant poster that I am plastering on our hospital wall.

1 Corinthians subway poster small

We truly believe we are under attack.  From trees falling through our house to car accidents to a million little annoyances that seem intended to wear us down, we feel like Satan is trying to hit us from all sides.  Thank God that we are not trying to fight this ourselves.  We feel completely tucked under the arms of our Heavenly Father who is barreling down toward the touchdown line, a ferocious running back who is defeating all His adversaries.  From our viewpoint as the football, it’s a bumpy and scary ride.  But I truly do still believe that God is carrying us to victory over this.  If you don’t understand this analogy, have a look at this video. Hat tip to Wed McMichael for the link.

Yes, I did just say that Jesus is my running back.  Somebody better go make a t-shirt.

We know that God is bigger than ANYthing that Satan can throw at us and we will continue to “cry out in distress, evening, morning, and noon,” knowing that He will hear us.  Pray, pray, pray.

Update from L.A.

A dear friend of Rachel’s, Candace Smartt writes:

I just got an update from Rachel via text.

Kevin was disqualified from the trial that he was supposed to start yesterday. They found out recently and it was a big blow.

He had to go through some heart testing (Echocardiogram) before starting the trial and did not “pass” the test. Seems like some of the treatment he has already had may have contributed to some mild heart issues. Not anything that would be life threatening now, but he is unable to continue with the trial because the medications involved with it can cause heart damage.

Their doctor at UCLA suggested starting a chemotherapy treatment immediately. This was reassuring because in the past they would have to wait a significant amount of time before being able to settle upon the next course of action (when a course of treatment didn’t work out).

The plan is to start the chemo combined with the braf inhibitor (dabrafenib) today. The chemo drugs are taxol and carboplatin. The plan as of this hour is he will endure one day of chemo every three weeks.He will become neutropenic (no immune system) so prayers for health of Kevin, Rachel and kids would be good.

The bad news: Kevin’s bilirubin levels have increased dramatically in the past 4 days (0.5 to 5.8!) They are admitting him to the hospital to try and figure out why this happened and hopefully help them come down. The problem is that the chemo drugs can cause liver toxicity. The liver levels are not a good thing going into chemo treatment.

Please pray that the chemo would immediately start killing the cancer and the tumors would shrink immediately.

Please pray that Kevin’s liver levels would come down significantly and they would find out what is causing the elevated levels.

Please pray that Kevin’s heart and mind and spirit would be encouraged and uplifted. I think he is getting tired and discouraged. Pray for a supernatural comfort and encouragement to fill him.

Please pray for Rachel. She’s got a LOT on her plate. A LOT. Wife, mother, patient advocacy, caretaker, away from home…. That’s just the tip of the iceberg. Physical and mental exhaustion and emotional distress are always pressing in hard around them.

Please pray for peace deep, deep in their being.

Please pray for God’s PRESENCE to be manifest – that HE would be so very close right now.

Please pray that God would protect them form the enemy who seeks to kill, steal and destroy us and our families.

Please pray that God would keep them. HE is able. He is more than willing. He loves them more than any of us could ever imagine.

Thank you.

Candace Smartt

Prayer and Petition

Sarah here.

Rachel and Kevin have noticed over the past few days, but today especially, that things are changing and that Kevin is getting worse faster than expected. As a result, Rachel called UCLA, left some messages, wrote some emails, changed Kevin’s flight and he is off to LA tomorrow morning.  Kevin is still able to do ‘regular’ stuff – like take the kids to fast food and the like, but they just don’t want to chance waiting until next Wednesday to start treatment. As of now, they do not know what day exactly he will be able to take his first dose, but know that it will be sooner rather than later.

For the moment, Rachel will stay in Atlanta, pack her and the kids up and fly to LA as originally planned on Tuesday of next week.

Please stop and take the time to pray now. Then please pray at your next meal for Kevin’s health to improve, and at your bedtime for Kevin’s peace of mind and his comfort. Then, when you wake, for Kevin’s family, then pray again for healing… you get the idea. Please pray, as often as you think to, for as long as you can. Please ask you friends, family and community to pray too.

Let’s lift this man up in prayer so that he can feel it. Let’s knock so hard on heaven’s doors that we can not be ignored.

A benefit concert? Aren’t we special?!

Visio Concert Flyer

Hey gang, for those who aren’t on the social bandwagon, we have a benefit concert coming up.  I know, I know, it feels kind of crazy, since it’s just little old Kevin and me and the kids.  But just call it an excuse for a party… we need one badly!  Come on out to Community Grounds Coffee Shop down near our ‘hood and enjoy some great music by Rye the Band.  There will be a suggested donation which will go directly toward our family’s cancer battle expenses and there will be all kinds of fun raffles, silent auctions, baked goodies, etc.

On that note, my sister is still working on the details and would LOVE it if you have something you would like to donate for the silent auction/raffle.  This can be anything from specific items to a gift certificate for your goods or services if you own a business.  Also, she needs baked goods to sell.  If you would like to help out in any of these areas, please send Sarah Thomas a private message on Facebook.  If you have trouble doing that, just shoot me an email at rachel@micah77.org and I’ll forward it on to her.

Even if you don’t have money or stuff to donate, this concert isn’t so much about that.  God has provided through so many of you that for the time being, our finances are on track for the next leg of the journey.  What Kevin and I really want is to see you!  We want to see so many of you in person who we’ve only gotten to know through the inter webs and give you a hug, say thank you, pray with you, cry with you, laugh with you.  So come on down, party with us and see us off good to the next leg of our crazy journey!

If you already knew about the concert, BIG NEWS!  The date has changed to THIS Friday October 18th at 6PM.  All the full details can be found at this link:

https://www.facebook.com/events/411433732294704/

If that doesn’t work right for some reason, go to

https://www.facebook.com/HillFamilyFighters

That’s pretty much home base for everything.  Whenever we post anything, we try to post it there first so that it can be easily shared, and that includes blog posts.  If you like something you read or want to share it with your friends, there should always be an easy little share button next to each post that will let you share about it on your own page.  I am constantly amazed at how all that social media stuff has worked to connect us with so many amazing folks.  And to know that people all over the world are praying for us and lifting us up because of it has just blown our minds at times.  Thank you again people of the interwebs.  You rock!!!

Love,

Rachel

“It’s okay Mommy, it’s only a tree.”

So um… yeah.  Last Monday this happened.

IMG 1641

And this.

IMG 1629

And this too.

IMG 1631

And oh yeah, almost forgot to show you this.

IMG 1637

Twelve hours later, Kevin and I had to step onto a plane to fly to LA to try again to find a miracle cure that’s going to save his life.  And our clothing and luggage looked like this.

IMG 1645

No biggie.

I know, go ahead and laugh.  I know I did.  But first I cried.  And then my four year old son helped me get a little perspective.

Kevin and I had just decided to head to bed early and deal with packing in the morning.  We were standing in our bedroom when we suddenly heard a gigantic crash.  Kevin thought it was an earthquake.  I smiled for a second and said “We don’t have earthquakes in Atlanta, sweetheart.”  But still, I was confused and trying to figure out what could have fallen to cause that kind of noise.  It literally sounded like every cabinet in our kitchen had perhaps fallen off the wall.  Which I started to think was not too unlikely of a possibility, given the way our life had been going the last few years.

IMG 1633

I walked out of our bedroom into the office to see a table upended and six feet of tree limb.. well, you saw the pictures.  Having no idea how this kind of thing affects a house, I envisioned our kids downstairs covered in rubble.  I started calling to them as they started screaming.  Kevin headed down the stairs to keep them from coming up while I screamed at him not to go down the stairs because they might collapse on him.  But he was already gone.

I dialed 911, all the while calling down to Kevin, too scared to take a step, fearing one false move would bring the whole house tumbling around us.  I saw that more tree branches had come through our closet at the top of the stairs and started to really freak out until I finally heard back from Kevin that he had the kids and they were okay.  I gingerly made my way down the stairs, pausing to glance at the surreal state of our closet.  There was literally a giant tree limb that you could have hung a tire swing off of, neatly poking through the wall.

IMG 1643

We got downstairs and out front with the kids and then I broke down sobbing, holding the kids tight, which only made them cry harder themselves.  At least Evie did.  Ever like his dad, Jude thought the whole thing was cool and tried to comfort me saying, “Don’t cry mommy, it’s only a tree.”

The fire trucks arrived, neighbors arrived, a special team of people who knew how to see if a house was safe to go back into after a tree falls through it arrived.  Kevin got on the phone with our homeowners’ insurance to open a claim.  I cried some more.  And then I finally started to laugh at the absurdity of the situation.

In case you hadn’t been following very closely, Kevin has stage four cancer.  For two years ya’ll.  When we closed on our house, right before the whole cancer chronicles began, a tree fell through our backyard.  Then the transmission died on the minivan we’d just purchased.  Then we got one flat tire after another.  Then the home renovation and repair contractor experience from hell (did I mention they installed three skylights upside down?)  Kevin’s first surgery was five days after we moved in.

I stopped nursing Evie at 9 months because I just couldn’t keep up with everything else going on and constantly having to hand her off to other family members to care for her for days at a time.  She got a serious urinary tract infection during our moving weekend and I struggled with intense guilt that maybe she wouldn’t have gotten so sick if I had still been able to nurse her.

Kevin had his second surgery right before Christmas.  He had a third bonus surgery the same day.  During nearly seven weeks of radiation, we battled squirrels in our attic who’d gotten in because of one shingle that our contractors had neglected to repair, causing over $1500 worth of damage.  I spent most nights not sleeping worrying about my husband dying or our house burning down when one of those damned squirrels finally found some electrical wire to gnaw through.

The story continues and continues.  There was that one time when I got  two flat tires in 24 hours and that other time when Kevin went into the infusion center for fluids and we ended up finding his liver was shutting down, he might be dying within the week, and that he was no longer eligible for the trial that was his best hope for survival.  And oh yeah, that other time when I got stuck traveling for 13 hours with a three and half year old and then that other time when I left my cell phone in D.C. only to have Fedex not be able to deliver it because of, you know, ice in Atlanta.  And ooh yeah!  Let’s not forget the time his treatment at the NIH was actually working but then tried to kill him and he was given three days to live.

But here’s the thing.  We’ve made it through.  It’s been a hell of a shit storm, and I haven’t even scratched the surface of the crap that’s whacked us over the head in the last two years.  I don’t know why this stuff is happening to us.  I don’t know if God is making it happen, if he’s letting it happen, if it’s satan attacking, or if we’ve just had some really really crappy luck.  I know that it sucks and Kevin and I are both more worn out than we could have ever imagined.  But I also know that it’s nothing really.

I mean, like Jude said, “It’s only a tree.”

We have a hope.  We have a plan.  We have each other.  And we have today.  And I guess that’s all we really need to worry about for now.

IMG 1650

Thanks again ya’ll for ALL of your amazing support.  We hope to see many of you at the benefit concert this weekend, and many more when we get settled into our little place in LA for the next couple of months.  We love you all and are SO grateful for each and every one of you.