Staying the Course

Sarah here. The following is an update via email from both Lila and Rachel.

To bring you up to speed of how we got here….
Lila: “They came out to LA ready to dive into a new trial (Phase 1 patient 1, AKT & BRAF inhibitor). Their hopes were pretty crushed when they were told that his ECHO was not at the range they wanted it to be. The meds for that trial would be dangerous for his heart and since the numbers were not what they wanted, he was kicked off the trial.

Doctor Ribas, Kevin’s primary oncologist in California, decided he wanted Kevin on the BRAF inhibitor with chemo together as he felt that will buy him some time. Dr. Ribas encouraged them saying there are always new trials on the horizon. Kevin’s levels continued to climb so they were hoping the chemo would start shrinking the cancer cells and bring his levels down. Unfortunately, levels didn’t go down so they installed a stent to relieve the burden on his bile duct. Later they found one more blockage and installed a drain attached to a bag outside his body. He still had lots of uncontrollable bleeding from the tumor on the outside of his face, on which they did surgery to stop the bleeding. It worked well and the bleeding became minimal. He was sent home (to their rental house) with Rachel. The kids were having coughs and running noses so Lila and Paul kept them as they couldn’t be around Kevin with his compromised immune system.

We had a birthday dinner for Kevin and later a small party with close friends. Then his drain started leaking. Back to UCLA they went. While they were there, Rachel got violently sick and could not stay with him at the hospital. They called a friend (Erik) to be with Kevin until he could see the doctor. The doctor said that it happens – these drains leak from time to time. They told him to put Desitin on the skin around the drain it to heal the irritation.

Rachel stays at Kevin’s cousin Claudia’s house overnight as she lives close to UCLA. Paul ended up taking Rachel the ER, where she was diagnosed with a stomach virus. Kevin’s tumor continued to grow to the point that it’s pushing his face to one side making it difficult to eat and brush his teeth. He’s still in pain from the tumor and back pain from the sustained hospital stay. He’s tired all the time and has a little appetite and is very weak.
So now Lila caring for him, Rachel is at the rental trying to recover and cannot be around Kevin and the kids are staying with friends (Bill and Linda) because they can’t be around Kevin either in their condition. Luckily Bill and Linda are open to caring for the children as long as needed. What a blessing they are! Also the rental house and where the kids are only minutes away from Paul and Lila’s house.

Today, Rachel is much better and is not contagious so she can be around Kevin. She is still weak but is took Kevin to UCLA today. He has an appointment to see the doctor and have labs and scans done. Kevin has a lot more bleeding now then he’s had the past couple of days. He’s very tired, he’s eyes are yellow (jaundice) and he’s weak and ate very little. He’s still throwing up occasionally. Today we should find out what his levels are. If they are good and continue in that direction then there is a chance that he can still do the trial. If not they will continue with the chemo.”

Rachel: “The results from today’s appointment are mixed. White counts are up which is good. Liver levels are up which is not good but not too high. His platelets are low so he will get a transfusion next week if they continue to be. Weakness seems to be from a combination of deconditioning from the hospital stay, cancer, elevated liver levels, and chemo. Docs say overall he is in good shape considering everything and to focus on resting but moving around and on getting calories. We’ll be doing more protein shakes and try to add in some other tasty ways to get calories. We are encouraged and stay the path for now.”

Please pray everyone. Pray for this chemo to work. Pray for his liver to function properly. Please, please pray.

Back to the ER

Sarah here:

Rachel called me just now (it’s 1:00 am here in Atlanta) to tell me that after an enjoyable but short visit with Kevin’s friends to celebrate his birthday, they are on their way back to the hospital. Kevin’s drain – the one attached to his liver – has come loose.  Kevin isn’t in pain, but it appears that it may be infected, which is particularly concerning given that he had chemo last week and is well on his way to being neutropenic (very low to no white blood cell count – or in other terms, no immune system) with a limited capacity to fight off any potential infection.

They decided to drive back to UCLA rather than going to their local ER as UCLA already has all of Kevin’s information in their systems and, assuming a possible admittance, would be much easier and faster to get him situated. But, unfortunately that means they have an hour drive ahead of them. They aren’t sure if the ER will simply adjust his drain and repair it, or admit him and take the old one out and put a new in. Rachel’s best guess is that they will choose to admit him either way so that they can keep him on antibiotics and free from any possible contaminants or infections. Which is a real bummer, considering he only got out of the hospital a week ago.

Rachel says she is emotionally calm and ok, but she wasn’t able to sleep at all last night and was only able to catch a one hour nap. So she is going into an anticipated hospital stay already exhausted. In addition, her stomach has cramped up, which she thinks is caused by her body reacting to the stress.

Please pray that they have a quick and safe hour drive back to the UCLA hospital. Please pray Rachel’s body will relax allowing her to think clearly and be at peace as they get through the next few hours. Please pray for very little wait time when they get to the ER, to be seen by doctors quickly and for them to have a clear direction as to how to treat Kevin. Please pray for no infection. Please pray that Rachel and Kevin would feel His peace, His presence, and His power at each moment.  Amen.

Hands up

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Here we go for another trip down the roller coaster. Our hands thrown up, we finish the long slow climb, teeter at the edge of eternity for just a moment longer, then go barreling down into… Into what? Ah, the joy of the unknown, the thrill of adventure. What loop de loop does God have planned for us next?

A friend of mine shared an interesting thought:

None of this is a surprise to God.

So what will happen next? God truly only knows, and today at least, we will enjoy the ride.

Kevin continues to improve, but we continue to have new obstacles. Last week when Kevin’s liver enzymes had miraculously come down to normal, his bilirubin kept going up. Once the ERCP cleared one of the blockages in his biliary duct and his levels were finally getting under control, his hemoglobin dipped dangerously low. Once a few blood transfusions got those levels up, the bleeding of his tumors increased, requiring platelets to try to stimulate clotting. Low grade fevers persisted which prompted the infectious disease doctors to extend his time on IV antibiotics so that now we’ve been in the hospital for two weeks.

Has it really been two weeks?

It’s a tough one to remember that none of this is a surprise to God. Every day we thought it would be “just a few more days” but we don’t really seem to be getting anywhere.

We did get him out of the hospital today, but only to be transferred to a different one. Not exactly progress. We’re at the Reagan UCLA medical center now, and Interventional Radiology is going to have a look at him in the morning to see if they can get this bleeding under control.

What do you think, God? Then will we be ready to get out? Pretty please? What’s up for us on your schedule next?

I think I can speak for both Kevin and I when I say that this has bar none been the hardest hospitalization we have gone through. But we have also felt closer to each other and to God than we have ever in our lives. Scary and amazing all at the same time.

Kind of like flying down a roller coaster with your hands up, right?

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