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

From D.C. to Los Angeles

I'm sorry for not posting more in depth and more often recently. I'm amazed at how tired both my body and my brain are these days. For one, traveling really does take a lot out of a person. Plus just the emotional intensity of the last few weeks as Kevin and I have wandered through the emotions of panic, anxiety, despair, hope, sadness, desperation, comfort, joy, fear and peace. We continue to pray for God to simply open and close doors, because there is no possible way for us to figure out the best plan of our own wisdom. Plus, you know, I'm just too busy hugging my kids to try to turn on my brain and write! More in depth posts about our NIH visit to come…

Today we head to UCLA for an appointment with Dr. Antoni Ribas to discuss some clinical trials that UCLA has to offer. These are different options than the ones we found out about at the NIH (National Institutes of Health) last Thursday. Between these two appointments, we hope to come away with a good sense of direction and long term plan for Kevin's treatment. Because all of the treatments offer 50% or less “success” rates and success is relative, it is reasonable to believe that he will end up doing more than one of them, so it is important to have a strategy that will leave him with the most options and give him the best chance for success at the end of the day.

We arrived in Los Angeles on Saturday evening, and I cannot tell you how wonderful it was to reunite with the kids. I just can't stop looking at them. I can't stop playing with Jude and I can't stop holding Evie. Oh my word I have missed them so much. And yet at the same time I instantly remembered how exhausting children can be at this age, and I was even more overwhelmed with gratitude for Paul and Lila keeping the kids for these past nine weeks. I cannot imagine how we would have made it through this summer with the kids at home. It was a blessing that can never be repaid.

The kids have grown so much! Evie is so much taller and she's slimmed out. She is speaking in short sentences and using all kinds of words that I'd never heard her use before. Jude is a regular chatter box and the emotional and intellectual depth of his conversations and play is just stunning to me. I simply can't believe we lost these past two months with them. It is just one more of the many things that cancer has robbed us of. Yet, I still come back to the fact that while Kevin and I endured the worst summer of our live, our kids really did have the best summer of their little lives. Even if I didn't get to share in it, I rest in joy knowing how much fun they had and how well cared for they were. But now it is time to hold them close to us and treasure each day as we slowly venture forward into the next chapter.

Yesterday we went to our home church here in Los Angeles, Village Church. It was such a joy to see and touch all of the wonderful people who have made up our church family for so many years. We quickly realized that, while we have moved across the country, Village will still always be our home. The highlight of my trip so far has been having Evie dedicated in the same church, with the same body of believers that dedicated Jude. This was also the same church where Kevin and I were married and the same church where we said goodbye to his mother. This is a special place, and it meant more than I even realized it would to have her dedicated here. I am so grateful for all of the friends and family who came to pray for her and for our whole family.


On our way to the National Cancer Institute

Last night we settled into our hotel after quite a full day of packing, last minute errands, flying, meals with new friends, and a long drive to Rockville, MD. We are staying at a hotel just a few METRO stops down from the National Cancer Institute. We'll head downstairs in a few minutes to grab some breakfast and then take a shuttle over to the METRO to give us plenty of time to make sure we are there right on time for our 8:30 morning appointment.

I've been up since 5AM today, but that's a good thing, I think. I'm not really feeling too anxious about what the day holds. We are excited to hear what NCI has to offer and hopeful that we will feel peace through the whole process and get all of our questions answered.
The flight up here yesterday was quite possibly one of the most beautiful gifts God has given me in a while. We could see the ground the whole time (small planes fly lower than commercial aircraft) and we had these headphones to wear because it gets really really loud inside the plane. The headphones did an amazing job of noise cancelling and piped satellite radio music into them. On our way up we were serenaded by James Taylor and John Denver (I did get a tad bit nervous when John Denver came on, but decided to not be superstitious).

Also, I couldn't really talk to Kevin at all, and so even though we were sitting next to each other, we both just silently enjoyed each other's presence and the flight. It was very very good for me to have that silence imposed on me. It was a 2.5 hour flight and I spent a good deal of it just being quiet and still. I didn't really pray a lot exactly, but just felt still in His presence, which is definitely what I needed I think.


At the last minute we decided to stay in a hotel, and I'm very glad because our friend Dane and Joni's house was quite a drive from NCI. The hotel is just a few metro stops down, so it should be relatively easy to get there this morning. NCI had a stupid crazy low preferred patient rate here (like more than half off), and it was only a little more than it was going to cost us to get a rental car (which we would have had to have done, since they lived so far). Apparently traffic here is epic as well, so another reason to be only making the drive once.

But Joni still picked us up from the regional airport near where they live in Fredericksburg (the pilot is an old friend of hers) and then we went out to dinner with her and her family. It was a sweet and special time.
Joni is not someone I knew personally, but is a close friend of my sister's from college. Interestingly, she'd been involved in advocacy for women's cancers for several years and then was diagnosed with breast cancer herself last fall at right around the same time as Kevin. This was shortly after she and her husband and their little girl Windsor had moved away from all of their family and support system. I cannot even imagine. She underwent surgery, six months of chemotherapy, and then radiation. She finished radiation about a month ago and is about to go in for scans that will hopefully continue to show an all clear.

We were able to chat openly with her a good bit about the other sides of cancer that aren't talked about a whole lot, and it was very affirming for all of us. She has a good prognosis and the scans are expected to come back clear, but even so please be in prayer that they will be clear and that she and NED (No Evidence of Disease) will be friends for the next five years until she can make friends with REMISSION!

Alright, it's about time to pack up and head downstairs for breakfast and the next leg of our adventure. I'm trying really hard to take lot's and lot's of pictures this time, even if they're not really great technically or artistically. The pro photographer in me trips myself up at times and then I end up not taking pics that are more snapshot worthy and less portrait worthy. In the end, a crappy photo is ALWAYS better than no photo, so I'm working really hard on this trip to do better.

Love to you all and keep sending prayers of peace our way!

-Shalom, Kevin and Rachel



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