Surprise Blessing

Hi folks, Kevin here:
I think we left off where I went into meet with my Interventional Radiology doc who had put in my first bile duck stent and drain.  He was going to put in a larger drain in order to stop the leaking.  At time,the first stent was put in, the word given to us was that it was impossible to put in a stent on my right side because there was ‘too much disease’ (their words) and so they went with the drain.  But God intervened this time.  Side Note: how many great amazing interventions of God have been described in writing as “But God?”.  Once Dr Lee “got in there” he decided he could put in another stent and so he just did.  Right then.  He coiled up the larger drain and taped over it just in case but I had no more drain!  And, by inference, this must mean that the Chemo did some good!  This was huge, that thing drove me crazy.  Having to have a bag attached to my leg 24/7 having to check on it and see if was filling up, having to drain it manually.  Having it leak because I didn’t get the cap all the way on, and Rachel having to struggle to get Bile out of sheets.  She’s got blood nailed, she can get blood out of anything but of course Bile is tougher.  All these things brought me down emotionally, so it was a huge lift to have it removed, and by surprise!  God gave us a lift for sure.

But now we are on “fever watch”.  We just discovered a fever last night (Monday).  Rachel called the IR doc and he advised re-connecting the drain and some Tylenol. and continuously watching.  And so, after some stupid momentary resistance on my part, we did.  We are hoping it is a blip, but if it continues or gets any higher we may need to go in again today.

And so it goes.  Thanks to everyone who follows our story, by reading, writing, contributing in MANY ways, praying, asking others to pray, and just plain loving us.

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


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?