Update 2.0

Sorry for the late update folks.  My current treatment plan consists of nothing more than taking pills twice a day.  I have been taking Vemurafenib for a couple of months now and I am definitely responding!  (responding is doctor-speak for “it’s working”).   My tumors have reduced significantly and I am back working full time. My main side effects are joint pain, rash and hair loss, but they are *mostly* tolerable.  This is great news, for sure, but I am not yet out of the woods.  While I am currently responding on this treatment, the data suggests that my cancer cells will develop a resistance to the drug in about 6-9 months (see here and here).  But there’s more.  It turns out that melanomas that develop resistance to the drug also become addicted to it.  So doctors are experimenting with alternate-dosing schemes which might break the cycle of resistance.  Add to that, we still don’t have a definitive answer on whether or not I will be re-considered for TIL therapy at the NIH.  It’s enough to make your head spin.

On a somewhat unrelated note,  I came across a news story revealing that Pope Francis has only 1 lung and was elected Pope at age 76 after having been the runner-up in 2005.  I am reminded that there there is still work to be done in this life.  As Frankl says in his excellent book Man’s Search for MeaningOne should not search for an abstract meaning of life. Everyone has his own specific vocation or mission in life to carry out a concrete assignment which demands fulfillment.  

And so the only thing left to do is to try to rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.

The roller coaster continues


We met with my surgeon today and received what we’re calling “qualified good news”.  First off, let me just say that my surgeon is an amazing human being.  Besides being one of the best-of-the-best surgeons, he has the perfect personality for us.  He cares deeply, but gets straight to the point and tells it like it is (no BS).   He immediately told us that my liver was NOT full of cancer and I would NOT need  major surgery on my liver.  I do have a tumor on my liver, but it is not the greatest cause for concern at the moment.  The problem now, is a tumor in a lymph node blocking my liver outflow ability.  This is very serious, but treatable.  He had already conferred with my other Emory docs and my UCLA doc, and they all agree that putting in a bile duct stent will solve the immediate issue.  This will be scheduled for  tomorrow or Friday (2/1) at Emory.  The reason we call this “qualified good news” is that we are still unsure if my doctors at the NIH will allow me back on the clinical trial for TIL therapy (a.k.a Adoptive Cell Therapy).  There are reasons for this of course, they’re not just being difficult.  The stent has a risk of infection and TIL therapy (a.k.a Adoptive Cell Therapy) will put me at even greater risk of infection so they are considering this carefully.    As a great thinker once said: “this is not ‘Nam, this is bowling, there are rules”.


So we don’t know anything beyond this week, and we are starting to learn to live like this regardless of the news (sortof).

A prayer sent to me from another amazing person awhile back…

From Celltic Daily Prayer Book

The Boisil Compline
Boisil, Prior of Melrose Abbey, died 661 BCE

I am placing my soul and my body
in Thy safe keeping this night, O God,
in Thy safe keeping, O Jesus Christ,
in Thy safe keeping, O Spirit of perfect truth.
The Three who would defend my cause
be keeping me this night from harm.
I call on You, O God,
For You will answer me;
Give ear to me and hear my prayer.
Show the wonder of Your great love,
You who save by Your right hand
those who take refuge in You from their foes.
Keep me as a apple of Your eye;
hide me in the shadow of Your wings.

Did I just put a prayer and The Big Lebowski in the same post?… I think I just did #thatcantbegood

Praise the Lord!

We just got the news that Kevin’s PET/CT scan came back clear!  Yesterday was a particularly rough day and I didn’t even have the chance to post about it.  It was his birthday, and I had spent the night before up with abdominal pains.  By the morning they were bad enough that we needed to go in to the ER.  After the babysitter came (thanks again Tanisha!) we headed to Emory Midtown Hospital, since his PET/CT scans were scheduled for there at 12:45.  We hoped I’d be through the ER by then, but just in case, we wanted to be in the right building.  Turns out they couldn’t find the cause of my pain, and 5 hours later I was discharged.  This was too late for me to go with Kevin to his scan and pray with him beforehand (he had to leave while I was having an ultrasound test done on my gallbladder and appendix).  I was waiting for him when he got out, and we drove home, hungry, exhausted, and me still in pain, albeit not as bad.  It was such a rough day, we honestly didn’t have a minute to really think and worry about his scan.  Maybe that was God’s plan, who knows.  The gravity of it all only hit us after we got home.  We tried not to think about it for the rest of the night and this morning.

So after such a rough day, which was the tail end (hopefully) of many many rough days we’ve been having, to get such amazing news is nothing short of a miracle!  Praise the Lord for His miraculous healing!  You see, we had found out that this melanoma seemed particularly aggressive, and since we’d heard it had spread to one of his lymph nodes, we were definitely getting scared.  This truly is an amazing miracle from God!

I got a video baby monitor in the mail today (I feel so yuppy!) because the kids are on the other end of the house and a different story than we are.  I had set it up before naptime, and this thing is sweet!  Anyway, naptime is over, and the kiddos just woke up minutes after I’d received the news.  They must have already heard, because they’re laughing and giggling up a storm!  I just love it!

Watch on Posterous


Follow up appointment and update

Today Kevin had a second follow-up appointment with Dr. C, who did his wide local excision and sentinel node biopsy.  As we mentioned before, we had heard the results of the biopsy that the cancer has spread to one of the three lymph nodes that were tested.  As this appointment today, we went over the complete pathology report with Dr. C and found out that the Breslow’s thickness of Kevin’s melanoma tumor was 7.2mm.  Generally, anything thicker than 4mm = no bueno.  In addition to the fact that the cancer had spread to a lymph node and that there was one small additional tumor found in the excision area, we were told that Kevin would have to have radiation treatment at the surgery site.  We don’t know a whole lot about it yet, but it will begin the first of the year, and likely go for 4-6 weeks.  It shouldn’t hurt or make him sick, so we are encouraged about that.

His second surgery, which will be to remove all of the lymph nodes in the area where the cancer had spread has been scheduled for December 1st.  His wonderful Aunties will be flying in to help out with childcare, etc. and we are so grateful and excited to see them.

He will have a PET/CT scan tomorrow, quite the birthday present, don’t you think?  As best we understand, the PET scan can find areas of cancer in the body that are larger than about 5mm, but can’t find small individual cells. The results of this scan will determine some of his next treatment steps, so please be praying that the spread is limited to that one lymph node alone.

We are so encouraged that he is in such good care at Emory and that there is a whole melanoma board looking at his case!  We trust that he is in good hands and that we continue to rest in the knowledge that he is in the hands of the Ultimate Healer who loves and wants good things for him.

A break from our regularly scheduled programming… house update!

It seems that life kind of “happened” and I haven’t had a spare moment to sit down and share about some of the many other exciting things happening in our lives!  I’m going to try to get things written down a little at a time, and things may be out of order here and there, but that’s the way my ADHD brain works.  I hope you will all enjoy seeing a few other tidbits of life around the Hill homestead.

Two weeks ago, less than a week before Kevin’s surgery, we FINALLY moved into our new house!  This was after delays with the contractors by four weeks, rescheduling the move twice, and ending up moving in before things were completely finished.  Have I mentioned that life hasn’t been really going according to “plan” lately?

We hired movers for the first time in our life, and can I say that that was the best $400 we have EVER spent.  SO worth every penny.  They literally came in at 9AM and had every piece of furniture set up and in the right room by 1PM.  They moved the piano, the washer and dryer, the upright freezer.  They put our king size bed in our master bedroom on the second floor and even set it up.  Why did I spend my twenties moving myself and all my friends in the back of my parent’s van?

After the move, Lila helped me whip the house into shape and we had our first party just one week and a day after moving in.  We got to host our church’s monthly potluck and it was such a blast!  Kevin had just had surgery a few days earlier, but we were both eager to have something joyful to focus on and a reason to get the house sorted out.  I’m so glad we did, because we hosted somewhere between 30 and 40 people and the house didn’t even feel crowded!  I can not tell you what a blessing this house already is, and even though we didn’t search out a huge house, the size has made it oh so comfortable.  It’s 2800 square feet, which is huge for intown standards.  Downstairs we have the living/dining/kitchen area and three bedrooms, and upstairs we have the master suite.  My goal is to take you through the house a little at a time (and also because I probably can’t manage to keep the whole place clean all at once for pictures!) so this week will be the master suite.  We’ll start with the office!

Now, if you remember, the attic had already been built out with a master bathroom and one long room that kind of resembled a bonus room.  And did I mention the entire thing had been painted blood red?  Not exactly the look I was going for!  Here’s a reminder of what things looked like before…


After a little brainstorming, I came up with the idea to subdivide the big space, with a master bedroom at the front part of the house and the middle part to be sort of an office/loft.  We opened up the wall to the stairway, so that it no longer felt like you were coming up to an attic.  We added skylights.  We added hardwood flooring.  We put a wall with french doors to divide the bedroom from the office.  We painted the whole thing a light, airy color called Sea Salt by Sherwin Williams.  I call it the magical chameleon color because it changes between a blueish gray and a greenish gray depending on the light and what’s around it.  This makes it go with everything!  Love!


My dad helped me build built this awesome desk for me.  It’s made from an Ikea countertop and two Ikea kitchen cabinets.  The whole thing was a tad pricey at about $450, but considering it’s custom fit to the nook and super durable, we felt it was a worthy investment.  This little nook used to be the master closet, but we took the wall down and then put the master closet in the bathroom.


I had always kept and displayed Kevin’s mom Agnes’ old SLR camera and liked the idea of having a vintage camera display.  So when my Dad pulled out some old family cameras, I jumped at the opportunity to group them all together and show them off.  Being a children’s photographer, I’m all about the light, and I felt like I needed a little bit more lighting when the sun went down and the gorgeous skylights weren’t filling the room with natural light.  I liked the idea of making a lamp out of a vintage camera tripod, but when I found this one for $40 at Target, I thought, “Why DIY when you can buy?”  Done and done.  I love how the cameras pop off the white shelf like an art galery exhibition and the tripod lamp makes me look fancy!


I wouldn’t be honest if I didn’t show you Kevin’s desk.  I made a promise to him that I wouldn’t make him keep it looking pretty, but would let it be the functional space he needs it to be.  We will be doing something about the cable clutter on the floor, but that’s about it. I’m grateful for that cable clutter though because it means that my amazing computer nerd hubby put my laser printer on the network so I can print from anywhere in the house, because he’s just that good!


This is the little sitting area for meeting with clients, reading while Kevin’s working, or just relaxing and gazing at my gorgeous skylights.  Did I mention that they’re gorgeous!  Natural light just makes me so happy.  You can also see the french doors and the transom window that lead to the master bedroom.  I got both the transom window and the window above my desk from a lady who had rescued them from an old 19th century house that was being torn down.  I love how they are a shout out to this house’s history, as we believe the original house was built in about 1890 or so.


Here is our library area.  I got this set of furniture from my parents.  Anybody remember the Cargo furniture from the late 80s?  It’s rock solid and still in perfect condition.  I’m thinking of painting it kind of a distressed white, letting some of the wood show through, and then covering the cushions with some fresh fabric to lighten it up a little.  For now, it’s super comfy, looks great, and totally anchors this area of the room.  You’ll see the rest of the furniture from the set when I show you the playroom.


The bookshelves are $15 prefab shelves from Wal-mart.  They do the job for now and help us to keep our book collection in check.  If we have more books than can fit on the shelves, then it’s time to give some away!  Eventually, I want to con my dad into helping me add a large piece of white trim to the top, some molding on the top and bottom edges and along the edges where each shelf joins the next to give it a built in feel and to make the whole piece sturdier and more solid.  But again, I’m so glad they work for me just the way they are!  Not bad for 45 bucks!

I absolutely love our office.  It’s such a sanctuary and a clean, uncluttered workspace.  I’ve never had a space like this to call my own, and I just love every minute of being up here.  It also makes things ten thousand times better to have our new puppy Sadie curled up under my desk warming my toes!



I just heard back from my doctor that tests have shown that my cancer (melanoma) has spread to 1 lymph node in my neck. So the next steps will be another surgery to remove it, and a PET Scan, and likely alpha-interferon treatments.   

Not the news we were hoping for obviously, but somewhat expected based on the initial staging / diagnosis. But we are blessed in many ways!  My boss has been super-supportive in giving me time off for doctor appointments, our church family has been praying and babysitting for us (thanks Jess!), and our extended family (Lila) was here for a long while babysitting, and getting our new home in order.  We are also extremely blessed that I am receiving excellent care from a leading research institution out here in Altanta Emory / Winship, and a family member has even paid our insurance deductible for a full year!  Thanks everyone for the outpouring of love and support for Rachel and I in this time.

And now we wait…


I’ve been sitting in the waiting room at Emory most of the day today.  Kevin had a pre-surgical procedure to identify which lymph nodes would be removed and tested, and then the actual surgery to remove the melanoma and the sentinel lymph nodes.



Dr. C just came out and told me that the surgery went great, he’s in recovery, and I’ll get to see him soon.  He is hopeful that the cancer hasn’t spread because the lymph nodes were so small, but will wait to get the results from the lab next week.  The melanoma had already grown more since Dr. C had last seen Kevin, so it sounds likely that we will next be heading to a medical oncologist named Dr. S (Dr. C is a surgical oncologist).  Dr. S will probably be discussing treatment options with us to prevent a recurrence and to seek out any rogue cancer cells that may have spread through the body (since they can spread through the blood stream in addition to spreading through the lymphatic system).  Based on the aggressive nature of Kevin’s lesion, this is starting to seem likely, so we will brace ourselves for that and lean on friends and family and continue to watch and pray.


I’ll be able to see Kevin in a few minutes hopefully and then will be advised about home care and hopefully hear about when I can bring him home.  We’ve got some great friends coming over tonight to help out with house stuff, and after a few days, Kevin should be feeling okay.  We honestly want to keep ourselves busy so as not to just be alone with our thoughts, so having all the house stuff to focus on is probably a good thing.  I will keep everyone posted.  Thank you all again so much for all your love and prayers and just standing in the gap for us.

Love you all,


The C Word

I'm writing a post I never thought in a million years I'd be writing.  This blog has settled into a little place where I occasionally update my friends and family with cute pictures and goings on of our two adorable children (they are so adorable, aren't they?)  And here I am turning this into a place to share updates and connect with family about something we really really hope isn't as serious as it sounds right now.

Kevin has cancer.  There I said it.  We've talked a lot amongst each other and our immediate family for the last two weeks, but I haven't written it down and told anyone else.  Honestly, we've just been trying to figure it all out and see what the next step is and get him into the right doctors, etc.  But somehow, posting to this blog makes it more real.  I've resisted doing it, because I didn't have the right words.  I still don't have the right words.  Look at me, I'm rambling already.

Anyway, here's what's going on, and here's what happened.  Kevin has a type of skin cancer called melanoma.  Less than 10% of all skin cancers are melanoma, and we won the lottery in that respect because his melanoma appears to be a rather aggressive kind even more so than most melanomas.

Earlier this summer, I started noticing blood on his bed pillow.  It appeared to be from a cut Kevin had gotten on the skin beneath his left sideburn that just wasn't healing.  It took a while to get in to see a regular doctor, then a dermatologist (two tries for that one).  Once he did, they removed what appeared to be a very large mole and sent it to a lab.  Never in a million years had cancer crossed our mind.  I don't know why, honestly.  I guess you're supposed to think about that with moles that are changing size, bleeding, etc.  But we couldn't really see it under his sideburn and didn't really know how bad it looked.

The day we were leaving to go out of town, Kevin got a call that the lab reports had come back cancerous.  They scheduled an appointment for another doctor a week from then, and we continued on our trip, feeling confident that if it was really bad, they would have scheduled something for sooner.  We assumed he'd be meeting with another dermatologist type to have it completely removed in their office and have his whole body checked over and then we'd be on our merry way.  We were concerned, don't get me wrong, but again, the odds suggested that everything would be fine.  Most types of skin cancer are not dangerous and do not spread.

We didn't know until the appointment the following Monday that the cancer had was melanoma and that the doctor we were seeing was a surgical oncologist who wanted to schedule surgery as soon as possible.  We were still pretty stunned as we walked out of the office, trying to process everything we'd heard and still not freak out.  They had scheduled him for a major surgery with general anesthesia called a wide local excision.

It means that they will take out the whole melanoma lesion (which is only the size of a nickel right now, but rather thick) and an additional 2cm in all directions around the lesion.  In addition, they would perform a sentinel node biopsy to detect if the cancer had spread to any of his lymph nodes in that area.  If the cancer had spread, then they would remove all the lymph nodes in that area.

Normally, a sentinel node biopsy and a wide local excision are not very tricky to do, except, of course, on the face, and near the eye which is exactly where the lesion is for Kevin.  Because of this and because of encouragement from Kevin's uncle who had done a ton of research for us, we got transfered over to Emory's Winship Cancer Center where they have a whole team of people who work on melanoma.  We got in with another surgical oncologist this past Monday for a second opinion.  He agreed with everything the first doctor had said, including the urgency to get it out, but also explained to us why this melanoma is more serious than most.

The lesion is greater than 4mm in thickness above his skin, which suggests that it has grown equally thick down into his body, suggesting a possibility for spreading.  The lesion is ulcerated, which I believe is just a fancy way of saying it's bleeding.  It's bleeding because the cancer has grown so dense in that area that it has outgrown the blood supply so the skin can no longer keep up in that area.  And the lesion appears to have grown very quickly.

Honestly, hearing these things has scared the bejeesus out of us.  But they also encouraged us that we definitely made the right choice by moving over to Emory.  The team over there are some of the best in the nation and this doctor is a leader in his field.  This is a huge blessing to give us peace.  We have surgery scheduled for Kevin for next Thursday, November 3rd at Emory Midtown.  After the surgery, there will be a few days of recovery (he'll most likely go home the same day as long as no skin graft is needed)  Then we wait to find out if the cancer has spread to the lymph nodes.  It will take 3-5 days to get the results and I'm sure they will be the longest 3-5 days of our life.

In addition, the doctor has already discussed the possibility that, because of the aggressive nature of the melanoma, he may treat Kevin with immunotherapy, something called Interferon Alpha.  As best I understand it, it would be medication that would be injected three times a week for a year that would encourage his immune system to search and destroy any rogue cancer cells that might be hiding out in other areas of his body.  This therapy sounds like it has the potential to be pretty rough, similar to chemo type side effects for a year.  But it's not always rough, some people have only flu-like symptoms and some even less.  Plus, we don't even know for sure if the doctor will want to go that path.  Based on what we understand, it sounds likely, but again, we are praying and will wait and see for the next step.

In addition, our personal life has been pretty crazy this past month.  We closed on our first house in the middle of September, and were set to move in the middle of October.  Some delays with the contractors have pushed things back and so as I write this, I am surrounded by moving boxes.  We are hoping to finally get moved in this Saturday, so please please pray that that happens.  Moving is chaotic on its own, but adding all this into the mix is overwhelming.

We have so many blessings though, for which we continually praise our Heavenly Father who protects us.  If Kevin was going to get cancer, he managed to get it in 2011 in America where we have access to the best medical treatments in the world.  We live near my parents who are able to help out with childcare at the drop of a hat when needed.  We have our dear family friend Lila who came out from Los Angeles to help us move and she is staying an extra week through the surgery to care for the kids and get us all settled in to our new house so I can focus on Kevin.  She has pretty much single-handedly packed up our old house.  She is pretty much amazing.  We have family members who have helped us with our super-high deductible health insurance (which really did seem like a good idea at the time, because who gets cancer the first year they have a high deductible plan, seriously?)  Another blessing is that, while the plan pays nothing for the first 10K, they pay 100% for anything after that, with no copay, no percentages we have to chip in, nothing.  It's starting to sound like we'll be blazing through that deductible pretty quickly so to know we don't have to worry about the rest is huge.

We are blessed that we have an amazing church family who is praying diligently for Kevin and being our hands and feet in this time of need.  We know they are there when we need them with food, childcare, etc.  We are blessed with wonderful friends and family .  We are blessed with an amazing house and beautiful calling to a broken neighborhood that is now reaching out to help US instead of how we thought things would be the other way around.  We are being blessed as we learn right now in this season to ask for help and to receive it graciously because we just know we won't be able to do it all.  This is a blessing that reminds us how much we depend on Him and the church body.

We are blessed in knowing that our Heavenly Father is carrying us in His arms and that we can find joy in even the darkest places.  I could go on and on and on of the many and amazing blessings, for which we are so grateful.

For those of you who are the praying sort, please keep these things on your heart:
  • Surgery for Kevin Thursday November 3rd at 2:30PM
  • Moving this Saturday October 29th
  • Encouragement and endurance for us over the next few weeks.  We are TIRED!
  • Peace for Lila as her husband has been ill back in Los Angeles, but they have chosen for her to stay here to help us right now.
  • Healing for her husband Paul
  • The continuing knowledge from our Father that he is carrying us and healing Kevin
Thank you so much dear friends, and please look to this blog.  We will try to keep it updated as often as we can with the latest news.


Welcome fall!


We had our first cool weather around here, and I must say getting just a little taste of it has made me sooo eager for fall to arrive.  I think it’s my favorite season.  We arrived in Atlanta on September 1st last year, and I remember having almost every dinner outside on my parents’ back deck.  We spent as much time as possible outside at parks, playing in the back yard and just taking walks.  I absolutely love fall in Atlanta!


Since we just barely missed summer last year, we experienced it as “rookies” all over again this year, and oh yes, the humidity!  Oh the humanity of it all!  Honestly, between children who sleep till 7AM (not that I’m complaining!) and then the first one going down for a nap at 8 or 9, by the time we were able to get out of the house this summer, it was just so stinkin’ hot that I’d usually admit defeat and we’d hide out in the air conditioning.


This summer is definitely the summer Jude discovered Sesame Street (we were so good about keeping him away from TV up until now!) and it’s honestly because there are only so many times a two year old can ride his tricycle around the living room!  I can’t wait for this lovely fall weather to be upon us so we can be outside running around and playing every day!


In honor of fall, I had to break out some of the kids’ winter clothing and dress ’em up.  Fall, we’re ready for you!