Plan E 2.0


We are NOT giving up hope.

Here is the long awaited update and info about plan E.  Yes, you heard that right, plan E.  Things are getting pretty crazy, ya’ll.

We are still in Los Angeles, and will stay here until Tuesday 1/8. After Kevin’s last scans he was taken off of the Anti-PD1 trial.  But then he was offered another trial here at UCLA. It’s a trial of the combination of a BRAF inhibitor called Vemurafenib and a MEK inhibitor and without getting too geeky in this post, let’s just say it’s a very good trial for him to get onto.

The phase 1 trial has shown very good results, in fact so good that randomized trials will be opening up very soon. We definitely want Kevin to be on this trial though, because he would be guaranteed to get the combination that has shown better responses. But it unfortunately requires weekly visits to UCLA for a couple of months, which is just not sustainable.  However, Vanderbilt University in Nashville has the same trial, but no open spots.  And wouldn’t you just know it, both Vanderbilt and UCLA agreed to let Kevin take his UCLA spot and transfer over to Vanderbilt to receive treatment.  Absolutely amazing.

So for now, this is our plan E: the BRAF/MEK combination trial, which will consist of daily pills and will hopefully start showing an immediate response.  He has screening tests to do here at UCLA and should start receiving his treatment at Vanderbilt in about two weeks.

Because this treatment tends to not be long lasting, we are in preparations for Plan F, or E 2.0 as we like to call it. This involves traveling to Washington D.C. to meet with the National Institutes of Health again to get set up for TIL therapy. Since it is a multi-step process, and since the first step requires him being off of any treatment drug for thirty days (which he currently is) we are going to try to get the ball rolling on that before  he starts the BRAF/MEK treatment.  This involves a minor surgery that will hopefully happen next Friday or the beginning of the following week.

So our basic “travel schedule” is this:  We stay here in LA until Tuesday the 8th.  Jude and I fly back early on the morning of the 8th.  Kevin and Evie fly back the evening of the 8th.  We leave the kids with family and fly to D.C. on the 9th.  Clinic visit at the NIH on the 10th.  Stay in D.C. for… not quite sure?  Fly back to Atlanta. Start traveling to Vanderbilt for treatment the week after we get back from D.C.  Whew, I don’t know about you but I get tired just thinking about it all!

We are so incredibly thankful for the help from so many people who have been helping us keep moving forward on this journey as we march through the alphabet of various plans.  So many of you have donated miles to help Kevin and I and the kids fly all over the country for treatment.  Others have donated money that has been used to help with medical bills and to help keep us solvent with the missed work and extra travel expenses.  Countless others have baked more casseroles and brought over more jars of soup than I can even begin to fathom.  And an army of you is covering us in prayer.  That is perhaps the sweetest gift of all.

I am getting to work on fully updating our “how you can help” page with specific things for the next chapter of our journey, practical things like amazon links to purchase diapers and more meal sign-ups, for example.  I will do my best to get that all up to date soon and to keep communicating to you, my dear and wonderful army of fighters, so we can keep right on marching through plan Q if that’s what it takes!

I cannot tell you how much it means, knowing that we are entering an even crazier season yet, where it is very likely that finances will get very tight, where our emotional and physical reserves are already SO depleted, that we feel God’s arms wrapped oh so snugly around us, carried and supported the body of Christ.

Thank you.

Thank you again dear friends, family, followers across the world for all of your care and support. It means more than you can possibly imagine.

Never give up.  Never ever ever ever give up.


Thank you to our dear friend Ashley Jones of Shuttersweet Photography for the beautiful pictures.  I’ll be sharing more of them very soon.

Anti-PD1 Infusion number three and nausea drama

Well, I was waiting to have a little more news to put out this update, but as I’m trying to let go of some of my “perfectionist” feelings to have things “complete” and instead just get things done, I’m going to try to just go ahead and post what I have.

Last week we had a little craziness, as Kevin’s been having some nausea that by Wednesday night had increased in frequency and intensity.  This is not a “normal” side effect for his treatment (but seeing as this is a phase one trial, that’s a pretty relative term).  Regardless, after Kevin having nausea and vomiting from 6PM Wednesday night to 6AM Thursday morning, I made the command decision to bring him in to Emory to get checked out.  I pretty much had to drag the guy because he told me there was some important stuff at work he needed to do that morning.  He hadn’t thrown up for a few hours, so he said he was pretty sure he was better.  Then he sat up in bed and threw up.  And I said to him, “…And, I rest my case.  We’re going.”

I am so grateful for my amazing neighborhood that we live in.  If any of ya’ll are looking for a home in Atlanta, I cannot recommend Adair Park enough as an amazing place to live.  It’s truly the people that make the difference.  I texted my neighbor Maiya to see if she could have her adult niece come over and stay with the kids (who were still asleep) until we got back and less than a minute later, at six in the morning, she said that Angela was at the front door.  Angela came in and went back to sleep in the guest bedroom till the kids got up while I spoke with the on call doctor and then we headed in to Emory.

RSH 2199

My amazing neighbor and bestie Maiya and her niece Angela

 We arrived at 7:30, which is when the doctor said that the infusion center opened, and I think he was wrong about that because the place was already packed!  Luckily they brought him in right away to be seen by the triage nurse and by 8:00 Dr. Lawson’s nurse had received my middle of the night emails and was discussing necessary interventions with the infusion center staff.  In another half an hour, Kevin’s blood work was done and he was getting settled into those oh so cushy vinyl lazy boys to get all filled up on fluids and the “good stuff” anti-nausea meds.  I spoke with our Emory team and we decided to wait and see what the UCLA team said as far as this being some sort of adverse (or even potentially good!) indicator of his treatment and by 11:00 we were back home.

RSH 1568

The good stuff

Kevin was feeling gobs better, and seeing as he doesn’t get paid if he’s not at work at this point, he decided to head on in.  I hadn’t slept in over 24 hours, so two of my other neighbors took care of the kids through to naptime so I could get some rest.  I am so grateful that Angela, Dawn, and Erica were there for us that day.  I was able to focus on Kevin and care for him and then take care of myself and get the rest I needed.  And because these were neighbors that my kids see on an almost daily basis, neither Jude nor Evie shed any tears over why their mommy wasn’t there when they woke up, etc.  Having a community of friends within walking distance from my house is such an amazing blessing and experience that I’ve never really experienced before moving into this neighborhood.  It is amazing, and incredibly useful as well!

On Friday as I was getting ready for our flight to LA for Kevin’s next infusion, I heard from Liz, the director of Kevin’s trial at UCLA.  She said she’d finally spoken with Dr. Ribas and he wanted Kevin to get a brain MRI as soon as possible, before flying to LA if possible.  In that moment my heart stopped.  She didn’t have to say it, I knew what that meant.  I remember sitting in the van, parked in the driveway, thinking that if it wall went downhill from here, that this was the moment I would look back and remember as the start of the next chapter.  I took a deep breath, closed my eyes, and tried to figure out what I should be doing.  What was going to happen next?  What do I worry about?  What do I find peace in?  I felt lost and frenzied and frozen all at the same time.  Finally, somehow, I started to put the pieces together of what I needed to be doing.  First I contacted Emory and tried to see if they could even get an MRI scheduled for today.  I realized it was unlikely we’d be able to make our flight, so then I got on the phone with Southwest and very sweetly finessed a reservations agent to see if we could get our flights rescheduled to the next day.  Oh Karen, bless her!  She not only got our flight rescheduled, but got us on a non-stop and didn’t charge my friend’s account any extra miles even though the change was totally last minute.  Southwest, you are amazing!

IMG 0320

Finally on our way… Southwest rocks!

Only then did I call my poor husband to tell him that his entire day’s schedule was changing.  I kept working out details and making changed plans with the folks we were staying with, visiting, etc. in LA.  And then of course, wouldn’t you know it by 4:00 our Emory team called me and said they’d tried everything and everywhere but they just weren’t going to be able to get Kevin in for an MRI that day.  THEN, I had to call Liz at UCLA back, tell her that, and see if she could get one scheduled at UCLA for Monday.  THEN, I was ready to just pass out from exhaustion.  It’s after days like these that I really wished I drank.  Or frankly, it’s probably a good thing I don’t drink, because I’d become an alcoholic!

We did our best to put our worries out of our mind for the weekend and focus on enjoying time with family.  We visited Kevin’s mom’s cousin’s family down in San Diego and had just the best time catching up, snuggling with new babies and just spending quality time together.  The rest of the trip was spent at Kevin’s cousin Claudia’s house, which is just down the street from UCLA (how convenient!)

IMG 0325

Fun girls’ night with Kevin’s mom’s cousin’s, sons’ wives.  So that makes us… I have no idea, except family!

Tuesday was UCLA day and wouldn’t you know it, they were totally behind with his bloodwork which pushed everything else behind.  Again I quickly realized we were NOT going to make our 3:30 flight, which was Southwest’s last flight of the day, so MORE calling and finagling and sweet talking to get the flight changed.  And just when I’d gotten it worked out and approved by a supervisor, my stupid phone hung up on sweet Mary!  Noooooo!!!!!  I seriously need a new phone, this one has just been through one too many bouts with a toddler and randomly hangs up on people, has wild volume swings up and down and is just a downright bipolar phone.  And in that moment it felt like my phone was kicking me in the face!  Argh!!!  I tried again and this time just barely got someone to be willing to switch the flight for us without charging a boatload of points.  All told I’d been on the phone with Southwest for over an hour trying to get this all done because of some stupid labs being delayed!

IMG 0027

 For the love of Pete, how much bloodwork do we need?!

Kevin met with Dr. Ribas before his infusion and we discussed the nausea that he’d had in the previous few weeks, culminating in his hospital visit last week.  Dr. Ribas did NOT think that the nausea felt consistent with a brain metastasis (he would have been much sicker and not have had times of feeling well) but it was still a strange side effect.  When we discussed the gassiness that seems to lead to it, he started to think that Kevin might have cancer in his gut somewhere.  This is an area that would not show up on a scan very well because of how much “stuff” we have down there in the ole GI tract.  This would explain SO much from the last six months.  Kevin has really had a lot of nausea that has dogged him through interferon, IL-2, and now Anti-PD1.  And it was never “normal” nausea and “normal” meds usually didn’t help very much.  Also, the way the Anti-PD1 treatment works, it could effectively “piss off” the areas of his body that have cancer in them, like they could “flare up” when they’re being attacked, you know?  So that makes perfect sense, right?  Here, maybe this will help.

IMG 0029

Dr. Ribas’ notes “explaining” how Anti-PD1 treatment works.

So here we are, back at Emory on a Thursday evening.  Kevin is finally having the brain MRI and we ask you to join us in prayers for NO brain metastasis.  But he is also having an X-ray of his abdomen and I don’t know what I really pray will come of that.  Do we want them to find cancer there which would explain a lot of troubling and unexplained symptoms?  In some ways that would be comforting, but still that would mean he has more cancer than we knew he had.  More cancer is definitely worse than less cancer.  I don’t know if it would change things with treatment or what.  So I guess we just ask that you pray the God would make things work out the way they should and that things are clear to our doctors so they have wisdom in which way to proceed.

I will post as soon as we hear the results of these scans as well as the biopsy that Kevin had done on Tuesday.  We are hoping that the biopsy will show that there are a higher number of fighter cells in his tumor tissue than were present at the biopsy he had before commencing treatment.  This would be a good indicator that the treatment is being effective.

IMG 0333

Kevin’s biopsy…That’s no baby on that screen

Kevin will have one more infusion before scans are done to see if there has been any progress.  Thank you again dear friends and family for all of your thoughts, prayers, support, and encouragement.  Even if I don’t always respond, I read every comment, email, facebook post, and text message.  They warm my heart and remind me that we have not been forgotten.  We are SO incredibly grateful for each and every one of you.  Thank you!




Kevin starts treatment THIS morning!

My heart is so completely full today. I cannot tell you how much it warms and overwhelms my spirit to have heard such an outpouring of comments as we did yesterday. I too often forget how many of you are walking this journey with us. I have another more detailed post I’m working on about the NIH treatment options and the UCLA options, but this morning I just have to offer a little “devotional” that’s been on my heart.

Just over a week ago, Kevin and I were literally sitting across from each other discussing memorial services. That is not because we didn’t believe God could work a miracle, but rather because we were at the point where a miracle was what it was going to take. I don’t write about it too often here, but melanoma is actually one of the least treatable cancers, especially if you are stage four. It is just one of the very terrifying realities of all this and Kevin and I are pretty practical so we don’t hide from it. It is what it is, and better to discuss the possibilities up front than to pretend it might not happen.

Anyway, in the past week, we have literally seen miracle after miracle. God’s hand has been all over every step we have taken in the past seven days, and it has been one of the most amazing experiences we have ever had. We have walked in perfect surrender, knowing that the next step was the only thing we could count on, and kept begging God to simply make it obvious and to start opening and closing doors.

Today we are in a place of perfect peace and excitement and hope that this treatment will be the magic bullet for Kevin. And trusting that if not that the next one after that will be. We are so confident in God’s plans because of the innumerable ways He has reached out and carried us in the past week. It is impossible to chalk up the number of providential events that have happened over the last week to coincidence.

But here’s the thing. In the simplest terms, a week ago we were sad and mourning, with only the faintest glimmer of hope. Today we are so full of hope and joy that we can hardly stand it. But Kevin hasn’t even started a treatment yet. He has exactly the same amount of cancer that he had a week ago. Who knows, maybe even a little more! God has not healed him. Yet literally everything is different.

I just have to share this with all of you because I think it’s so important to understand that God really does work in real time. He walks with us, carries us, guides us, even when He hasn’t answered our prayers with the “giant” miracle we are looking for. And if I am looking around, I can receive the amazing gift of seeing and feeling His presence no matter the situation. God works miracles and answers prayers on a daily basis by being Emmanuel, God with us. He is here, and He is real, and He is working.

Okay, morning devotion over!

We are on our way right now for Kevin’s FIRST infusion at 8AM at UCLA. Be in prayer that this Anti-PD1 will cause “programmed death” in Kevin’s cancer cells! Amen!

Kevin Update – We have a treatment plan!

This post will be brief, as I plan on posting complete details probably tomorrow or later today,but I didn’t want to keep anyone in suspense any longer now that we (finally!) have a plan.

Kevin is enrolled in a clinical trial at UCLA of a drug called Anti-PD1. The PD part actually stands for programmed death, how’s that for an impressive name for a cancer fighting drug! The treatment is extremely promising, and we found out that Kevin literally got the last spot in the trial, and there were only two places in the entire nation that had ANY open trials. We had no idea that this was the case when we presented ourselves for our consult with UCLA on Monday. It is amazing to us how God has yet again guided our path. We are completely stunned and amazed at His enormous power and presence.

Kevin will have a minor surgery today, called an ultrasound-guided biopsy to remove tissue from one of his tumors for the purposes of the study trial. He will have his first infusion of the drug tomorrow morning! Did you hear that? He starts tomorrow! We can hardly believe it and are in complete awe of how perfectly and quickly this plan has unfolded.

There should be NO side effects from the treatment, which is also amazing. Also, the doctors are seeing greater than 40 percent durable responses from the drug. Again, completely amazing when we’ve been looking at options with only 5 or 10 percent response rates.

After Kevin receives his first infusion, we will return home (still working on those travel plans, visit here to find out how you can help). Then Kevin will fly back to UCLA every 21 days for another infusion. This will continue indefinitely for now, and will only be stopped if the next set of scans (three months from start of treatment) show lack of response or some form of toxicity that forces him to stop.

We are overjoyed to know we have a plan and to have the even greater gift that this treatment will not make him sick, he will likely be able to continue working, we will be together as a family, and he’ll get to come out to LA to see friends once a month! Please continue to pray and PRAISE GOD for the ways that He has revealed Himself in this perfect plan.

Stage four melanoma treatment options and how we got here – ippilimumab and vemurafenib explained

We have had so much that has happened in the past few weeks and my body and brain have just been so exhausted at the same time, that I have gotten woefully behind on my blog updating. While I have for the most part used this blog as my own way of processing and working through many of the spiritual aspects of our journey, Kevin and I both feel that this blog needs to serve another purpose as well. We feel a strong desire to give back to the interwebs and to other melanoma patients as well. We have found a wealth of information and resources online, and many of them have come from the blogs of other melanoma warriors. I have often found this information infinitely more helpful than the academic journal articles that I have slogged through to try to understand the various treatment options out there. Regular people usually write like, well, regular people. With that in mind, Kevin and I have decided that we want to share in as much detail as possible the medical side of our journey, primarily for the benefit of those who go after us. We haven't always given tons of information, because we know that treatment choices tend to be personal and often controversial. It's hard to tell the world we are going to do “X”, knowing that some folks will feel very strongly we should do “Y” or “Z”. But that said, we feel it is important to try to share EVERYthing we've been learning in as much “regular people talk” as possible. So if you find posts like this boring, feel free to skip over, knowing that I'll put the words “Kevin update” in the title if there is real news regarding his health and plans. This post is the first of many to be dedicated to all the folks like us who are frantically scouring the internet, getting a crash course in medical terminology, and wondering how their liberal arts history degree is ever going to help them navigate a VERY complicated world of VERY complicated melanoma treatment options.

On Thursday morning, Kevin had an appointment at the National Cancer Institute at the National Institutes of Health in Bethesda, Maryland. We found out about the NIH and the clinical trials (they call them protocols) that are offered there through another melanoma warrior named Jake Richter. Sadly, Jake’s battle took a difficult turn, and he passed away in June. I never met or even corresponded with Jake, but his extremely thorough blog posts were invaluable to me, as they were chock full of useful data. We will be forever in his debt.

I’m not sure I’ve explained very well how we ended up on this crazy adventure to the NIH and then on to UCLA, so first a little back story. I know I posted the day we received the results of Kevin’s scans that showed that the IL-2 had not had enough impact to warrant continuing treatment. That was on Wednesday, August 22. Our doctors made an appointment for us to meet with them on Monday, the 27th, so that they could have a little time to research our options and discuss them with the other members of our team (one of the benefits of being at Emory is that there is a multi-disciplinary approach and tight coordination between our surgical oncologist, radiation oncologist, and medical oncologist. There is also a tumor board that meets regularly to discuss the more “interesting” cases of which, unfortunately, Kevin is one.) When we met on Monday, we were unfortunately told that Emory did not have any clinical trials for stage four melanoma that were open at this time. The options that Dr. Lawson discussed with us that Emory could provide were the two new FDA approved treatments for stage four melanoma, ipplimumab and vemurafenib. These two drugs were both approved in the last year, and as they are so new, there are continuing trials looking at their efficacy in combination with other potential treatments.

Ippilimumab is a form of immunotherapy (the interferon and the interleukin-2 treatments that Kevin had already had are also forms of immunotherapy). As I’ve mentioned before, the main premise behind immunotherapy is getting to help the body’s own immune system attack the cancer cells. This has proved an especially important path to explore in melanoma treatment, as melanoma is very UNresponsive to any forms of traditional chemotherapy and seems very tightly connected to immune responses. Ippi works differently than the two older forms of immunotherapy, interferon and IL-2. In both of those cases, the patient is infused with man-made versions of interferons or interleukins, which both occur naturally in the body. If I’m correct, the main premise is simply to give the body more of these proteins to better be able to fight off the cancer.

Ippi (also known by its brand name Yervoy) works differently in that it is what is called a human monoclonal antibody. Basically, what ippi does is it keeps our immune system turned “on.” We have a natural mechanism in our body to turn our immune system “off” when we’re no longer sick, and since cancer cells are tricky little buggers, they try to convince our immune system that they are not “sick” cells and thus an immune response is not necessary. So if ippi can then block the mechanism that tells our immune system to turn “off”, our body’s natural immune response can have a better chance at continuing to attack and kill the cancer cells.

Ippi works really well in comparison to IL-2 or interferon. It’s a huge breakthrough in the melanoma field, especially considering there were no new drugs to be FDA approved for advanced melanoma in nearly two decades. But still, the response rates haven’t been great (data suggests between 10 and 20 percent) and while the responses appear to be durable (long lasting) there are some very significant possible side effects. The biggest concerning side effects appear to be GI issues, like colitis and very severe diarrhea. With close supervision and good communication between patient and doctor, these side effects can be mitigated, but often a patient ends up in the hospital or has to decrease or stop treatment. All for only a little bit better chance of success than IL-2. Add to that that Ippi is a slow acting treatment. The regimen is one infusion every three weeks for four cycles. Scans would only be done at the completion of treatment, and even then they might not show a response, thus requiring another round of scans a month later. So basically, it would take 3-4 months to show if there was any response to ippi at all (with only a 10-20 percent chance that there would be).

Our Emory team also told us that we could consider Vemurafenib. This is the other new drug for treatment of stage four melanoma. It works in a different way than immunotherapy. It falls under a class of drugs called targeted gene therapy. It only works in patients who have a mutation called BRAF, of which about fifty percent of melanoma patients have. Kevin and I were happy to find out that he has the BRAF mutation, as this means that vemurafenib is always an option. (also called Zelboraf) has had GREAT success, and very very high response rates. The photos I’ve seen of before and after scans are just stunning. Essentially, vemurafenib is a BRAF inhibitor, and immediately puts the brakes on continued growth of melanoma cells by interrupting this BRAF pathway. We were initially very excited about vemurafenib (as was the whole melanoma research community) because the response rates were so high. In fact, the responses were so good that during randomized phase three trials, an ethical dilemma was created by placing anyone on the control arm of dacarbazine, a chemotherapy drug known to have ridiculously low response rates for melanoma, but at the time was considered the “standard of care” against which vemurafenib needed to be tested. Literally the vemurafenib arm was experiencing greater than 80 percent partial to complete regression and the dacarbazine arm has less than 5 percent response rates. They actually ended the trial early because it had become unethical to leave folks on the control arm knowing that vem worked so well. There’s a great pulitzer prize winning article series in the New York Times chronicling the development of this drug.

So, if the drug is so great, what’s the catch? Well, even though it was working so wonderfully, and invoking what some called the “Lazarus effect”, literally healing patients from their deathbeds, the effects were not long lasting. After about 6-18 months of great quality of life and near total tumor regression, most of the patients saw their cancers come back in full force and then died rather quickly. This is not for nothing, as it is still substantial progress in the field of advanced melanoma treatment, but we pretty much decided that we’d like to keep vemurafenib in our back pocket, to be used only after we’d exhausted other, curative options or if his cancer appeared to be suddenly growing very quickly and we needed immediate results.

We of course would love to see immediate results right away, but are realizing that it is more important to be patient with a slower acting drug like ippi or something else than to jump to vemurafenib knowing that for most patients vem only buys them time. We are still hoping to buy Kevin 15 years or more, not just 15 months.

So, after going over the few options that Emory had for us, we realized that it would probably be wise to seriously research some of the many options that are currently in clinical trials. This is yet another time that I am realizing that it is SO important to be your own best advocate (or your spouse’s best advocate). As much as I try to stay off the google in general, I had been following the state of melanoma research these past several months, knowing that new developments were coming up all the time. Amazingly, we are currently in a bit of a renaissance of melanoma advances, as there had been such a huge dry spell up until about 18 months ago. We sense that researchers are SO close to finding something that could transform advanced melanoma from a near certain death sentence to a chronic condition or even better a completely curable cancer.

This truth is no more evident to us than in the story of our friend George. In 2005, just a few months before Kevin and I got married, one of Kevin’s best friends, who he’s known since childhood, was diagnosed with leukemia. George found out that he had a form of leukemia called CML, which a quick google search on his part told him he’d pretty much be dead in five years. There was basically no other option than a bone marrow transplant which is risky and doesn’t have great numbers for success in the case of his type of cancer. A new drug was in trials called Gleevec. It had literally come onto the scene just months before. This drug is also a type of targeted gene therapy like Vemurafenib.

Once George got started on this drug, his cancer slowly moved to complete remission. He continues to take the medicine to this day, and it is basically his own personal miracle cure. No one knows if someday his cancer will develop an alternate pathway and return in full force the way that melanoma tends to do with vemurafenib. But for now, folks with CML have not been recurring and the drug continues to work amazingly well. It has truly turned CML from the worst kind of leukemia to get into the best kind.

George’s experiences are another reason we decided to look with hope to the clinical trial world. So that afternoon, after our discouraging appointment at Emory, we sat in a coffee shop and opened up our laptops. I remembered Jake’s blog posts about his experiences at the NIH in Washington D.C., so decided to start by looking there. The next part of the story will have to wait until tomorrow, as I believe I detect tiny voices through the baby monitor, and snuggling with my little ones will have to take precedence for the rest of the day.

Love to you all and thank you again for ALL of your continued support, prayers, encouragement, and love. It means so much to know how lifted up we are.

-Rachel and Kevin

In the clouds


As I type these words, we are literally flying through the clouds. We are sitting in the back seat of a single engine plane being flown by a friend of a friend to bring us up to Washington D.C. We are wearing these crazy headsets that make me feel like I'm in Top Gun, and the plane flies low so we can look out the window and see the countryside below us through the clouds.


And for the first time in almost two weeks, I feel at peace.

I do apologize for the long “radio silence”. It's been a rough road since we got the results of his scans, and we were frankly stunned at how little clarity there would be about the next steps. I have tried to write and share, but until I got something figured out, it was just too exhausting, both emotionally and mentally to try to fill you all in.

Truthfully, we still don't have a plan yet, inasmuch as we haven't settled on a specific course of treatment and we don't have a date that we will start something. But we at least have a plan to get a plan.

Which brings me back to why we are soaring through the clouds.

Basically, the IL-2 treatment didn't work and in the time we spent doing treatment, his cancer has gotten slightly worse. The only options that Emory has are the two FDA approved treatments for metastatic melanoma, ippilimumab and vemurafenib. They each have very big pros and cons, but for a number of reasons it made sense to look elsewhere to find out about clinical trials.

After a solid week of researching, calling every major cancer center in America, and meeting again with our local doctors, we got appointments set up at the National Cancer Institute and UCLA. Kevin will be seen tomorrow all day at NCI. On Friday we may do a little touring in D.C. or have more appointments. On Saturday, we fly to Los Angeles to reunite with the kids.

On Sunday, we'll be going to Village Church for the 11:00 service. We'll be hanging out in the chapel afterwards for about an hour if anyone would like to come say hi to us. Also, we will be having Evie dedicated. This means a lot to me since we had Jude dedicated at Village Church and we were also married there. I attended Village for nearly ten years and Kevin for longer. Though it is no longer technically our home church, it is our home when we are there. So if you're around, join us for the 11:00 service at Village on Sunday and pray with us for our family.

On Monday Kevin has his appointment at UCLA at 12:30. Between this appointment and the one at NCI, we hope to arrive at a treatment option and plan that sounds promising and then to get started as soon as possible. We honestly have no idea how long we will be in LA. We booked one way tickets to just get there and then will figure out the next step after our appointment on Monday.

For now, please continue to pray. Pray for us for peace, wisdom, happy reuniting of our family, and for Kevin's body to be miraculously healed!


On our way!

More details to come tonight but we are officially on our way! We are flying to Washington d.c. Courtesy of angel flights Atlanta where Kevin has a consult tomorrow at the national cancer institute. Then we travel to LA on a commercial flight on Saturday. Kevin has an appt at UCLA on Monday

Scan Results

Will write more later but here is a quick update. Kevins brain MRI came back clear, praise God. His other scans showed some increased growth on his face and the spot on his liver disappeared but a new spot appeared, so I guess that means its worse. Either way he will not be continuing IL-2 treatment. We will meet with doctors Monday to discuss the next step.

We are numb and don’t really know how we feel. Please keep us in prayer for now.

Rachel and Kevin

On dying to self and other Monday lessons

RSH 1831

Kevin has his scans today.  Our calendar stops at this Wednesday.  We simply cannot plan a thing past that day, since we have no idea what will be happening next.  Maybe the scans will show progress and we will rejoice and return for the third round of IL-2 next Monday.  Maybe they will show no progress, and we will cry and then take a deep breath and discuss further treatment options.  Maybe they will show that not only has the treatment not helped things, but the cancer has continued to grow and spread.  And we will mourn.  And we will pray.  And we will try to trust God.  Maybe.

But today, I cannot live in maybe.  I can only live in today, and try not to worry about the maybe.  Kevin decided to go to work this morning because it is good for him and he is, amazingly, able to set aside his worries and fears and focus on his job.  Work is a wonderful distraction for him when he feels well enough.  I decided to go up to a coffee shop that I have recently discovered.  It rests hidden in the back of a wooded apartment complex, overlooking the Chattahoochee River, right up against national park and trails.  It is one of the most peaceful and relaxing places I have ever been, and I go there and walk among the rocks at the edge of the water and meet with God.

RSH 1788

This morning my neighbor called me up.  She has twin girls who have a birthday today.  Sweet little Ra’Niya is turning twelve.  But her sister Sa’Miya died when she was six months old from SIDS.  Maiya was calling to see if I was around for a visit, but I had already headed up to the coffee shop.  I listened to her share about how Ra’Niya woke up at 4AM this morning crying, mourning the death of a sister she had never known, but who still holds a piece of her heart.  I cannot imagine losing my own twin, or even the very idea of having one but having never known her, only having known your mother’s grief as the years’ milestones pass by… birthdays, deathdays, holidays.  Even twelve years later, the wound is still deep and painful.

RSH 1851

I invited Maiya and Ra’Niya to come up and meet me here at the coffee shop, knowing that it would be a special place where we could pray and perhaps God could meet with them the way He has been meeting with me out on the water or on the trails.  They are coming up, but first, said Maiya, she needed to pay a visit to a friend who was admitted to the hospital last night because the treatment is not working and the cancer has spread to her brain.  They are going to sit with her friend for a while, and then come and join me and we will cry and pray together.


In her own grief, Maiya is making time to minister to another.  She comforts her daughter while enduring the pain of her own loss.  I can not fathom the pain of the loss of a child.  Nor the painfully intertwined emotions of having a twin that survived while one did not.  Daily reminders of joy and pain, gifts and loss.

In going through this time of such and pain and loss for our family I too often forget how many others are grieving.  Kevin is still here with me.  We woke up this morning and were granted another day.  Yet there is still loss.  Life will never be the same, no matter how this whole thing turns out.  He will never be the same and neither will I or even our children for that matter.  There are wounds that will take the rest of our lifetime to heal and grief over missed opportunities and lost time.

RSH 1843

Yet this morning, I find myself drawn the thought that I must die to self.  That in dying to self, to my own grief and fears, I can minister to others who are grieving and who are hurting.  As I pondered that thought, I knew what I wanted to write about today.  I opened my computer and looked up the verse on dying to self.  I was surprised that all the translations I found did not use the word “dying.”  The word used in nearly every translation I found was to “deny” ourselves.  The command is from Jesus.

He says in Mark 8:34-35 

“Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life will lose it, but whoever loses their life for me and for the gospel will save it.”

I don’t know, I’m not a theologian, and I haven’t taken the time to really study this verse in context.  But what it says to me today is that I can, in fact I must set down my own fears, my own worries in order to follow Christ.  And in doing so, Christ will be able to use me to minister to others.  And I’m not just bailing on my own needs either.  Because if things work out the way He is commanding, then someone else will deny themselves and follow Christ and be led to minister to me.  In trusting that God works things out this way, He allows all of us to minister and be ministered to.  He allows us all to be a part of His overflowing love.

RSH 1830

I spoke with a friend and mentor yesterday about my current struggles not with why did Kevin get cancer, why did God allow it, etc.  But my struggles are currently a little bigger, more like, why God, in Your perfect design and wisdom, would you have even created a world that had the possibility of evil to begin with?  It all seems a little absurd that if You could design ANYthing in ANY way you wanted, you would really create it all this way.  Sometimes it seems like everything after the fall is just like this great crazy compromise.

I am blessed to know I am not alone in my doubts and questions.  This issue is one that has been studied and debated throughout all of the history of Christianity.

RSH 1846

John shared with me one idea that God was so overflowing with His own love and goodness that He wanted to create man to share it with and to add to His own expression of His love.  And even before the fall, God created man to be in relationship with other humans, again as an expression of His goodness.  He said, “It is not good for man to be alone.”  And then He created woman.

So anyway, as I meditated this morning on this denying self and ministering to others who were grieving and hurting, I came back to what John shared.  In His love and goodness and wisdom, God created it this way.  From the beginning to the end of the Bible, God tells us that He created us to reflect and pour out HIS love through ourselves and into others.  And to receive HIS love into ourselves from others.

And so today, instead of borrowing worries from tomorrow, I choose to die to self, to deny myself, and to allow God to use me instead to comfort another.  And in so doing, I am myself comforted.  Thank you God for your wisdom in this mysterious design.