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.

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.

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!”.

When I left you, Rachel and Kevin had left to go see wound care specialists and hopefully head to the hospital to have his blood checked for platelet counts, etc.  Unfortunately they had to wait until tomorrow.  So they headed home and Rachel and Kevin both took a nap. I cleaned the house, organized his pills, and worked on getting a hospital bed for him.  When Rachel woke she went out to Trader Joe’s and shopped for the highest calorie foods she could find and came home with a bag full of some of Kevin’s favorites.  She woke him to take his pills and then attempt some peanut butter cups (which by the way folks, 3 of those TJs dark chocolate peanut butter cups are 200 calories!!!).  While chewing one Kevin halfway choked on it.  And it scared the crap out of us.  Rachel felt terrible that she was pushing food on him so hard and Kevin, in his amazingly sweet and supportive way said, “It’s ok. It is. You can do this. You can keep encouraging me. You can do this.”

Rachel and Kevin talked a while about going for a walk and then settled on going to see the kids at Paul and Lila Vornbrock’s house before they left for a sleep over with some friends.  Lila and Paul graciously made us dinner, Rae and I played with the kids and we all watched a little TV. It was a really lovely time with family.  Kevin rested and nibbled on food. When Evie coaxed him, “Daddy you gotta drink you milk” he took a few more swallows.

We headed back to the house where I got Rachel to eat a little more (she hadn’t really eaten much at dinner), got Kevin all snuggled in for the night and then finished cleaning the house and the dishes.  While I helped Kevin take off his jacket, pulled back his covers, propped his pillows just the way he liked it, he said, “Oh wow. This is awesome, having someone to do all of this.”. Made me feel like a million bucks.  Rachel headed to bed as well after finishing some notes of things she needed to do tomorrow and I completed the  paperwork to apple for a free hospital bed rental and passed out.

At 3:00 am I heard Kevin up again. I found him in the living room contemplating how he’d get what he wanted to drink, get the TV on and get cozy in his favorite recliner.  I got him settled and grabbed his requested drink, pulled a blanket over him and told him to call for me when he was ready to get back up and into bed.  Again, he was so kind and appreciative.

At 5:30 am I heard Kevin attempting to get back out of bed and so I went to help him up.  But after 3 attempts, he still wasn’t out of the chair and almost fell to the ground on one knee. But then, he pushed with his legs and was all the way up.  I was impressed that he’d gotten up. He was mad that he almost didn’t make it.  We got him snuggled in again and I awaited Paul who was coming to bring donuts and Kevin’s cell phone (which I’d left at the house the night before).

At 6:30 I got Rachel up and Kevin got out of bed and sat on the couch for breakfast.   I made Rachel’s coffee and Kevin’s oatmeal and took a shower while she helped him eat all  of his oatmeal – which is an impressive feat, honestly.  He had the strength get cleaned up, change clothes, get a dressing change on his facial tumors as well as on his bile drain and walk to the car.  I was extremely impressed. He was extremely exhausted.

At the doctor’s office to get his blood counts checked, Kevin dozed a good bit.  The PA for Kevin’s oncologist, came in and sweetly, yet condescendingly greeted us and asked how he was doing.  (Rae and Kevin had felt that the PA and Kevin’s oncologist – were somewhat pandering to their hopes and weren’t expecting much more for Kevin than to make him comfortable, not that he would get better). She allowed the nurse to come in and take a vial of blood and shortly came back with his results.  And they were up. Just a little bit, but they were up. And so were the PA’s spirits.  Her tone was no longer condescending. Her body language had changed. Not much, but a little. She examined his mouth and how the thrush was improving and asked about how his shingles and pneumonia had improved as well as went over medications with Rachel.  Then they sent us all down for platelets and blood. We were optimistic and Rae was practically giddy with the improvement.

I stayed with Kevin while he got his infusion and Rachel went to complete the arrangements for the hospital bed (which will be delivered on Tuesday!).  That evening, while Kevin’s buddies hang out with him at the house, Rachel and I were invited to join friends of Rachel’s at at Ladies Christmas Tea at Calvary Church. It was a lovely evening of friends and talking and tea and yummy food. We were so grateful for a night out.

When we got home and said good bye to Kevin’s friend Ian, Eric (a dear man who has chosen to be the hands and feet for pretty much ANYTHING that Rachel and Kevin need) offered to stay and help.  Kevin, who had been snoozing, woke up.  We told him how friends had come by while he was in the hospital and dropped off food. He asked, “What kind of food?”  (he hadn’t really expressed interest in food in the last few days, even though we had been attempting to tempt him with all kinds for the last few days). Once we told him that we had caesar salad his face lite up.  “Caesar salad?! I’d love some caesar salad?”  He then got out of his arm chair, walked to the dining room table and, praise the Lord, ate dinner!!!  Rachel and Kevin enjoyed a few moments of dinner together while Eric and I exclaimed awe and amazement at the strength and determination of this man.

Eric then helped me get the kitchen clean and get Kevin’s liver drain dressing changed.  We got both Rachel and Kevin snuggled in bed and said good night.  Eric is one of those rare people who feels God’s calling to do whatever it takes to care for this family. I’m in awe.  I went to bed so very blessed by God’s provision and Kevin’s improvement.  It wasn’t a huge improvement, but it was little. And every little bit counts. Every little bit of food, every little bit of sleep, every little bit of hope and encouragement counts.

Kevin has received LOTS of blood products over the course of his treatment and, as I’ve said, every little bit counts. I know that I have asked for prayers, monetary donations, and many other things to support the Hills. Now, I have a different kind of request.  One to help Kevin AND the millions of people across our country who are fighting hard to stay alive. Whether it’s cancer or another illness, many people from the very young to the very sick are in need of blood and platelets. Unfortunately there is a shortage of these products all the time. But you can help to ensure that Kevin, and others, always have access to the treatments and blood products they need. Please contact your local blood bank this coming week and donate on Kevin’s behalf.  And when you donate, we invite you to change your FaceBook status to, “Today I gave blood for Kevin Hill.  Every little bit counts.”

Sarah here. As promised, I’ll aim to keep the blog up to date as best I can. And as Rachel has the strength and time she’ll write too. For today – its just me.

As you probably know, I flew out to LA and got here Tuesday afternoon. (My husband and I are blessed with some pretty awesome family and friends who banded together to help my husband take care of our kiddos while I’m away and made the arrangements very quickly.) A friend of the family drove me from the airport straight to the hospital to be with Rachel and Kevin.  When I arrived Kevin gave me a hug and I met a few of his friends who were  visiting him.  He looked… well, he looked like a man who has stage 4 cancer, shingles, thrush (a fungal infection of the mouth) AND pneumonia whose been through more medical procedures and treatments than I care to count and who is feeling just a tad bit better today.

A lovely couple came a while later who had heard about Rachel and Kevin through a prayer letter, had gotten a sitter (for their 6 children) and driven into the city to pray over Kevin. The sincerity, sweet words and blessings that they poured into Rachel and Kevin was beautiful.  We were all deeply moved by that time, holding hands and praying together for our brother.

That night I stayed with Kevin while Rachel went to Kevin’s cousin Claudia’s house to get a good nights’ sleep and have a night off. Kevin rested well. He and I had a quiet and enjoyable morning in the hospital together. He cracked a few jokes (which I enjoyed immensely and took as a good sign) and we worked alongside one another a bit on our lap tops.

Rachel slept really well (late even) and joined us around 10:00 am to hear the good news that the doctors felt like he had improved to a place where being in the hospital wasn’t going to help his recovery further and wanted to send him home. Rachel was excited that he was doing so well so quickly (the previous Sunday night he had been in really rough shape), while Kevin, I think, was a bit bummed to be leaving his comfy hospital bed.  The doctors switched all his medications from IV to pill form, re-attached his bile drain and bag, gave him 2 more units of platelets, wrote out his prescriptions, and sent us home.

On the way home, another set of cousins (Kevin’s mom’s cousin Elizabeth and her family) called and invited us to dinner. Kevin felt he was up for it so we met them at a classy burger joint.  Almost as soon as we arrived Kevin started to feel odd. We had been there about 30 to 45 minutes when he said he needed to go home. I was tired still from the time change so I offered to take him home.  When I asked him in what way he wasn’t feeling well, he said he wasn’t really sure. He wasn’t in pain and was only mildly nauseous.  He thought it was a bit of sensory overload with all the people there. When we got to the house, as I was helping him out of the car, he lost his equilibrium and therefore his balance. He almost fell but caught himself on the car hood. This had not happened before and it frightened him a good bit.

We got him inside and into bed to relax while I brought in the luggage from the hospital and got things unpacked. I checked on him fairly often and he seemed alright. He dozed a great deal and would even fall asleep in mid conversation. I could only imagine how tired he must have been. Rachel and Kevin’s family arrived and then left again to go fill prescriptions and get supplies for the next few days while I chatted with one of Kevin’s cousins, a really neat woman our age who shared mine and Rachel’s love of chatting.

Kevin called me in and said he was feeling strangely again, as if he was going to pass out. I called Rachel to see when she might be back and to get her thoughts. We assumed low blood pressure (as his BP has been pretty low lately) or possibly his body attempting to metabolize all those pills – he HAD taken a lot of pills in the hospital.  Rachel returned with Elizabeth and he told her how he was feeling.  He was fearful and afraid that this odd feeling, like he would pass out while lying down, was an indication that this was the end. Elizabeth, who is a retired ER nurse who has had experienced her own pain as a cancer patient herself and loss of her husband when her children were very young, spoke kindly with a quiet strength to Kevin and answered all his questions.  Kevin seemed calmed by her presence and kindness and her assurance that given his pulse and other indicators he was indeed NOT going to die tonight.

They had to go home and so we said our good byes. Rachel sat by his side for a while encouraging him and promising him she would fight hard for his life but that when the time came she would let him go, if that’s what it came to.  Rachel had said these things to Kevin several times since I had arrived – making sure that fighting hard was still what he wanted to do, and ensuring him that she would fight hard for him – all he had to do was keep accepting care.  She is hopeful for him but also fully understanding the circumstances as they are.  She knows God can and does heal and perform miracles. She knows that some very smart doctors have suggested looking into hospice. She knows he doesn’t want to be a burden on others for years to come. She knows that she wants to do everything she can to get him well, and if not well, at least feeling better and comfortable.  I heard the heart of a woman fighting for the love of her life. Fighting to keep her faith and hope strong. Fighting to be realistic and not in denial. I saw the face of a man who has fought hard and long for his wife and his children.

I helped get his medicines, water, heating pad, humidifier, etc. and said good night.  We all crawled into bed and I fell asleep thinking about my to do list tomorrow – finding a hospital bed for him to have at home, organizing his pills and prescriptions into his daily pill boxes, cleaning the house, writing a blog post and praying.

I awoke at 6:00 am to hear Kevin throwing up. He hadn’t thrown up for several few days. Again, a new symptom. I got him cleaned up and back into bed for a bit. I did some work on my laptop and woke Rachel and Kevin at 7:00 with coffee for Rachel and oatmeal for Kevin. Kevin sat with me in the living room while I worked and he nibbled on oatmeal.   He said he only slept a little bit but had terrible nightmares when he did. Rachel got up and started preparing for the day while I helped Kevin eat more.  As we were preparing to leave and I was helping him get out of the chair, his bile bag  caught on the chair and he lost his equilibrium again. It frightened both of us a good bit and Rachel decided they would go back to UCLA to get his counts checked again after their visit with the wound specialists.

They left and I got to work on my to do list.

I thought many times about the conversations I’d witnessed last night and this morning. I am blown away by this couple. How deeply they rely on their faith. How determined my sister is. How tightly they hold to one another. How well they love each other. How open and honest they are. How hard they have fought.

Will you join them in the fight?  Will you pray for them?  Pray often. Pray hard. Pray honestly. They both understand the direction this fight seems to be going. But maybe, with many many prayers, God will grant them a bit of wind against their backs, a boost to their spirits and fresh dose of hope.  Please join me in praying for His mercy and that he would grant them a miracle.

First, allow me to apologize for the lack of blog posts / updates.  Rachel has been focusing very hard on helping Kevin and taking care of him that she hasn’t had the energy to write. She WANTS to write, she has told me several times how she wants to, and how helpful it is for her to write.  But for now, I’ll do my best to keep you informed.

Last week, on Monday, Kevin had an appointment where doctors told him that he wasn’t recovering from treatment well and his numbers continued to be poor, some of them stable and some of them worsening. They were told that it appeared as if Kevin’s bone marrow was not recovering and therefore not creating new white and red blood cells. The doctors told her that they could not give him any additional treatment until his bone marrow began to recover, and that if it didn’t, they would need to start looking into hospice care. Rachel began to look into ways to best help him start to gain weight and begin to heal from all that his body has endured these last few months so that he could get well enough again to hopefully qualify for the treatment that he had originally gone to LA for.

On Friday, they went back to doctor to see if he was improving and his numbers were slightly better than they had been on Monday, however he still needed 3 units of platelets and 3 units of blood. Kevin texted me saying that he felt pretty good once he’d had that.

Over the weekend, however, Kevin’s health began to decline again.  He has been very tired, unable to eat much, and battling nausea. For all that Rachel has been trying and how hard she is working to stay on top of his medicines and help him heal, he simply wasn’t.

This evening Rachel drove Kevin back to the hospital at UCLA to have him admitted. She felt that if he is to get better at all, he needs the kind of constant care and resources that a hospital staff can provide, as well as more immediate access to blood products as he needs them versus them driving back and forth to UCLA every time he needs them. Kevin has an appointment tomorrow to test his bone marrow to determine if it is recovering and the results of that test (and likely others that will be done) will give them the information they need regarding which way things will go.

Two things she has said that stand out in my mind over the last few days. First, that there is still hope. She has hope that he may yet recover and Kevin is still in the fight. He hasn’t thrown in the towel. There are treatment options yet to try and she feels that with diligent care and effort, Kevin can still pull through.

The second is her questioning where she is on the fine line between hope and denial. She has asked God to change her heart if she should come to a place of acceptance and He hasn’t yet. But the words hospice keep getting thrown and around and that has a way of dampening hope.

Rachel has asked that fly to LA on Tuesday and I’ll try to be helpful to her in any way I can as they figure out what the next step is going to be.

Please pray.  Rachel asked Lila to ask me to write to ask for your prayers. They need your prayers now more than ever. Won’t you join me in covering them in prayer and asking the Lord for his mercy, His grace, His healing, and His blessing on Rachel and Kevin?

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.