Sarah here.

Rachel and Kevin have noticed over the past few days, but today especially, that things are changing and that Kevin is getting worse faster than expected. As a result, Rachel called UCLA, left some messages, wrote some emails, changed Kevin’s flight and he is off to LA tomorrow morning.  Kevin is still able to do ‘regular’ stuff – like take the kids to fast food and the like, but they just don’t want to chance waiting until next Wednesday to start treatment. As of now, they do not know what day exactly he will be able to take his first dose, but know that it will be sooner rather than later.

For the moment, Rachel will stay in Atlanta, pack her and the kids up and fly to LA as originally planned on Tuesday of next week.

Please stop and take the time to pray now. Then please pray at your next meal for Kevin’s health to improve, and at your bedtime for Kevin’s peace of mind and his comfort. Then, when you wake, for Kevin’s family, then pray again for healing… you get the idea. Please pray, as often as you think to, for as long as you can. Please ask you friends, family and community to pray too.

Let’s lift this man up in prayer so that he can feel it. Let’s knock so hard on heaven’s doors that we can not be ignored.

Hey gang, for those who aren’t on the social bandwagon, we have a benefit concert coming up.  I know, I know, it feels kind of crazy, since it’s just little old Kevin and me and the kids.  But just call it an excuse for a party… we need one badly!  Come on out to Community Grounds Coffee Shop down near our ‘hood and enjoy some great music by Rye the Band.  There will be a suggested donation which will go directly toward our family’s cancer battle expenses and there will be all kinds of fun raffles, silent auctions, baked goodies, etc.

On that note, my sister is still working on the details and would LOVE it if you have something you would like to donate for the silent auction/raffle.  This can be anything from specific items to a gift certificate for your goods or services if you own a business.  Also, she needs baked goods to sell.  If you would like to help out in any of these areas, please send Sarah Thomas a private message on Facebook.  If you have trouble doing that, just shoot me an email at rachel@micah77.org and I’ll forward it on to her.

Even if you don’t have money or stuff to donate, this concert isn’t so much about that.  God has provided through so many of you that for the time being, our finances are on track for the next leg of the journey.  What Kevin and I really want is to see you!  We want to see so many of you in person who we’ve only gotten to know through the inter webs and give you a hug, say thank you, pray with you, cry with you, laugh with you.  So come on down, party with us and see us off good to the next leg of our crazy journey!

If you already knew about the concert, BIG NEWS!  The date has changed to THIS Friday October 18th at 6PM.  All the full details can be found at this link:

https://www.facebook.com/events/411433732294704/

If that doesn’t work right for some reason, go to

https://www.facebook.com/HillFamilyFighters

That’s pretty much home base for everything.  Whenever we post anything, we try to post it there first so that it can be easily shared, and that includes blog posts.  If you like something you read or want to share it with your friends, there should always be an easy little share button next to each post that will let you share about it on your own page.  I am constantly amazed at how all that social media stuff has worked to connect us with so many amazing folks.  And to know that people all over the world are praying for us and lifting us up because of it has just blown our minds at times.  Thank you again people of the interwebs.  You rock!!!

Love,

Rachel

So um… yeah.  Last Monday this happened.

And this.

And this too.

And oh yeah, almost forgot to show you this.

Twelve hours later, Kevin and I had to step onto a plane to fly to LA to try again to find a miracle cure that’s going to save his life.  And our clothing and luggage looked like this.

No biggie.

I know, go ahead and laugh.  I know I did.  But first I cried.  And then my four year old son helped me get a little perspective.

Kevin and I had just decided to head to bed early and deal with packing in the morning.  We were standing in our bedroom when we suddenly heard a gigantic crash.  Kevin thought it was an earthquake.  I smiled for a second and said “We don’t have earthquakes in Atlanta, sweetheart.”  But still, I was confused and trying to figure out what could have fallen to cause that kind of noise.  It literally sounded like every cabinet in our kitchen had perhaps fallen off the wall.  Which I started to think was not too unlikely of a possibility, given the way our life had been going the last few years.

I walked out of our bedroom into the office to see a table upended and six feet of tree limb.. well, you saw the pictures.  Having no idea how this kind of thing affects a house, I envisioned our kids downstairs covered in rubble.  I started calling to them as they started screaming.  Kevin headed down the stairs to keep them from coming up while I screamed at him not to go down the stairs because they might collapse on him.  But he was already gone.

I dialed 911, all the while calling down to Kevin, too scared to take a step, fearing one false move would bring the whole house tumbling around us.  I saw that more tree branches had come through our closet at the top of the stairs and started to really freak out until I finally heard back from Kevin that he had the kids and they were okay.  I gingerly made my way down the stairs, pausing to glance at the surreal state of our closet.  There was literally a giant tree limb that you could have hung a tire swing off of, neatly poking through the wall.

We got downstairs and out front with the kids and then I broke down sobbing, holding the kids tight, which only made them cry harder themselves.  At least Evie did.  Ever like his dad, Jude thought the whole thing was cool and tried to comfort me saying, “Don’t cry mommy, it’s only a tree.”

The fire trucks arrived, neighbors arrived, a special team of people who knew how to see if a house was safe to go back into after a tree falls through it arrived.  Kevin got on the phone with our homeowners’ insurance to open a claim.  I cried some more.  And then I finally started to laugh at the absurdity of the situation.

In case you hadn’t been following very closely, Kevin has stage four cancer.  For two years ya’ll.  When we closed on our house, right before the whole cancer chronicles began, a tree fell through our backyard.  Then the transmission died on the minivan we’d just purchased.  Then we got one flat tire after another.  Then the home renovation and repair contractor experience from hell (did I mention they installed three skylights upside down?)  Kevin’s first surgery was five days after we moved in.

I stopped nursing Evie at 9 months because I just couldn’t keep up with everything else going on and constantly having to hand her off to other family members to care for her for days at a time.  She got a serious urinary tract infection during our moving weekend and I struggled with intense guilt that maybe she wouldn’t have gotten so sick if I had still been able to nurse her.

Kevin had his second surgery right before Christmas.  He had a third bonus surgery the same day.  During nearly seven weeks of radiation, we battled squirrels in our attic who’d gotten in because of one shingle that our contractors had neglected to repair, causing over $1500 worth of damage.  I spent most nights not sleeping worrying about my husband dying or our house burning down when one of those damned squirrels finally found some electrical wire to gnaw through.

The story continues and continues.  There was that one time when I got  two flat tires in 24 hours and that other time when Kevin went into the infusion center for fluids and we ended up finding his liver was shutting down, he might be dying within the week, and that he was no longer eligible for the trial that was his best hope for survival.  And oh yeah, that other time when I got stuck traveling for 13 hours with a three and half year old and then that other time when I left my cell phone in D.C. only to have Fedex not be able to deliver it because of, you know, ice in Atlanta.  And ooh yeah!  Let’s not forget the time his treatment at the NIH was actually working but then tried to kill him and he was given three days to live.

But here’s the thing.  We’ve made it through.  It’s been a hell of a shit storm, and I haven’t even scratched the surface of the crap that’s whacked us over the head in the last two years.  I don’t know why this stuff is happening to us.  I don’t know if God is making it happen, if he’s letting it happen, if it’s satan attacking, or if we’ve just had some really really crappy luck.  I know that it sucks and Kevin and I are both more worn out than we could have ever imagined.  But I also know that it’s nothing really.

I mean, like Jude said, “It’s only a tree.”

We have a hope.  We have a plan.  We have each other.  And we have today.  And I guess that’s all we really need to worry about for now.

Thanks again ya’ll for ALL of your amazing support.  We hope to see many of you at the benefit concert this weekend, and many more when we get settled into our little place in LA for the next couple of months.  We love you all and are SO grateful for each and every one of you.

Kevin here…

We recently posted a link to Facebook etitled: For Patient #1’s wife, melanoma is a thief (don’t let the Phillies fan art in the picture turn you away, no one’s perfect!).  If you haven’t read it:  it is a hard but very accurate account how metastatic melanoma affects a family (esp. the caregiver).  Little did we know that post would foreshadow me becoming Patient #1 on a different clinical trial.  Here’s the super small nutshell on how we got here:

1. Surgery / skin graft to take out the original mole (wide-local excision)
2. Test to check if melanoma has spread to surrounding lymph nodes, turns up positive
3. 2nd Surgery to take out those lymph nodes (parotidectomy / neck disection) 3rd Emergency Surgery to fix subdural hematoma cause by vomiting severely after surgery
4. 33 rounds of high-dose radiation to head and neck.
5. Red-tape causes disqualification of randomized Interferon / Ipilimumab trial so Interferon Alpha is chosen as standard of care for adjuvant stage.
6. High-Dose Interferon Alpha (adjuvant) brings major nausea and vomiting
7. Recurrence detected in the original location directly within the field of radiation!
8. 2 cycles of Interleukin-2 at 10 and 8 doses respectively but cancer  progresses.
9. Fly to NIH (Bethesda, MD) to consult with the NIH regarding TIL therapy with IL-12,
10. Then fly to LA to consult with UCLA for Anti PD-1 Trial.
11. Sign up for the Anti-PD1 trial at UCLA
12. Fly back and forth from ATL to UCLA every 3 weeks to take Anti-PD1, which completed with zero side effects but, cancer still progresses
13. Attempt to get on a BRAF/MEK clinical trial starting at UCLA and transferring to Vanderbilt – fails over communication issues.
14. Fly back to NIH to have surgery to harvest cells for TIL therapy with IL-12 – successful.
15. Get very sick while liver enzymes go wildly out of control – but calms down on its own and no one knows why
16. Get kicked off of TIL therapy with IL-12 trial for being “too sick” to complete it.
17. Start BRAF inhibitor (Vemurafenib) at Emory which is VERY effective and shrinks all of my tumors dramatically
18. Stop BRAF inhibitor (Vemurafenib) in order to prepare for TIL therapy with IL-12 at the NIH  (now that my liver has calmed down)
19. After some delays at NIH and no medication for weeks, tumors start coming back, but well enough to be re-instated on TIL therapy with IL-12 trial
20. TIL cells cause unexpected HUGE immune response which almost kills me, but they reverse it to save my life.
21. TIL Therapy with IL-12 determined to be not-effective  (likely because they had to reverse it) and cancer progresses further.
22. Go back on BRAF inhibitor (Vemurafenib) at Emory and add a MEK inhibitor to it then switch to another BRAF inhibitor (Dabrafenib) at UCLA
23. Symptoms and tumors start getting better for a  few weeks, then tumors come roaring back.

So when you’ve already done all of this, a Phase I trial doesn’t seem too scary anymore… right?  We’ve exhausted almost all of the treatments we know about, including the cutting edge ones.  My cancer has officially “developed resistance” to all the drugs out there for melanoma. Liver area tumors are most likely back and causing nausea / vomiting 2-5 times per day almost every day now.

So after passing some emails back and forth with our UCLA Oncologist we learned of something new, just barely on the horizon, and we do mean BARELY.  It’s called an AKT inhibitor.  As you can see if you follow the link, the trial is not even open yet, unless you know Dr. Ribas at UCLA of course.  😉  The idea is that when BRAF mutant melanomas develop resistance they activate another signaling pathway (which allows the melanoma cells to replicate) called AKT.

While AKT inhibitors have been given to humans to treat other cancers, the combination with a BRAF inhibitor has never been tried.  So I will be Patient #1 for this combination.  Our doctors are hopeful because they have already seen success in human cell lines (these are tissue samples derived from biopsies just like mine).   When they inject the AKT inhibitor and BRAF inhibitor into these cells in the lab, the melanoma cells start dying off very quickly.  Our doctor used the word “hopeful” in describing this treatment option.  So this is good news!

The next steps of the plan include flying home, getting some radio surgery for the brain tumor, picking up the kids, dealing with the tree that fell on our house, and flying back to LA to get started on the new trial.  We hope to start on Tuesday October 22, and our plan is to stay in LA for about two months due to the high number of initial visits and because, you know, we have no idea what exactly is going to happen.

‘Evenin’ y’all. Sarah here.  I’m not sure where to start but here is a jumbled update.

Rachel and Kevin, our brother Joshua and his wife Jen (who flew all the way from Oregon), my husband and I, and all our kiddos took a lovely trip over the weekend to a cabin in the North Georgia mountains to enjoy some family time and make some memories.  It was wonderful and exhausting and a blessing.  We knew that this coming week would be a tough one for Kevin seeing how tired he was, but he and Rachel appeared hopeful regarding the appointments and meetings they were scheduling.

Kevin’s scans at Emory last week showed a new tumor in his brain and he went in today for radiology planning for a second radio-surgery on this second tumor that will happen week after next.  Rachel, after much finagling, was able to reschedule their trip to a day earlier (they leave early tomorrow) to a non-stop flight to UCLA for scans, a biopsy to determine if the current drug therapies are working – we are pretty sure they aren’t as his external tumors have visibly worsened over the last 3 weeks – and a strategy meeting with their lead oncologist at UCLA to determine next steps in treatment.

While Rachel was making calls, emails and packing, a tree fell on their house.  Yes. You read that right.  About an hour or so ago, a tree fell on their house.  Nope, we do not have heavy winds in Atlanta right now.  Nope, no tornado.  Yes, we need your prayers right now. Prayers of gratitude for His protection as no one was hurt, prayer for continued protection – they have had so very many hardships in the midst of Kevin’s 2 year + long battle with melanoma, prayer for peace for them, and as always a renewed HOPE.

A HUGE thank you goes out to the members of the Adair Park community who are rallying around them as they sort through the necessary steps to repair the damage while they are away.  Y’all are amazing.  Thank you.

Sarah here again!

First, a brief update on Kevin and Rachel.  Kevin has continued to experience symptoms and side effects that may or may not indicate that, in some ways, he is getting worse and in others,  better.  He continues to be very tired with minimal stamina, but ‘holding steady’ as it were.  Kevin has taken leave from work for a few weeks to primarily rest and recover as well as to visit with family and go to doctor appointments.  We hope you will join us to continue to pray for Kevin and Rachel.

Secondly, THANK YOU all so very much for supporting our brother Josh Marinacci and his WebOS fundraiser!  With your help Josh was able to make a really BIG dent in the “Bridge the Gap” campaign and we just can’t thank you all enough!

Finally, we are grateful for Elise Hamel who is hosting a Pampered Chef Fundraiser for the month of October!  Pampered Chef has everything item and gadget you could ever want for the kitchen, and lots others for the home.  We hope you’ll peruse the products offered and make a purchase to support the Hill Family!

Here’s how it works:

• 10% of sales  made during the month of October will donated to the Hill Family if the total purchased during this fundraiser is less than $600.
• 15% of sales  made during the month of October will donated to the Hill Family if the total purchased during this fundraiser is $600 or more.
• Elise will contribute 100% of her commission which means up to 30% of sales will be given to the Hills.
• An additional $3 will be contributed for every future Show booking from the fundraiser. This could be for anyone who wants to host a catalog/online show anywhere around the country.
• $1 of every purchase of a “Help Whip Cancer” limited edition product is donated to the American Cancer Society (this does not deduct from the % given directly to the Hills)

To order, follow these steps:

1. Visit www.pamperedchef.biz/ehamel and click on “shop online”
2. Enter “Hill Family Fighters” or the name “Rachel Hill” in the Host/Organization Name
3. Click “search for host” (if you just click on “place an order” your order will not be counted towards the fundraiser)
4. Select “Hill Family Fighters” and you will be taken to the store.
5. After you have selected your items, you can proceed to check out.
   * NOTE: ALL customers must select direct shipping.

Also, if you have a purchase of $75 or more, you can select one of this month’s guest specials (in it’s own category on the left hand menu of products) for free.

If you want to order but aren’t comfortable placing an order online or have problems ordering or questions on products, let us know and we can put you in contact with Elise directly and she can take your order over the phone.

I have posted lately asking for monetary support to assist Kevin and Rachel in keeping afloat financially, and so many people have generously reached out and selflessly given to the Bridging the Gap campaign.  Today, however, I ask for your prayers.

As you know Kevin’s doctor at UCLA changed his existing medication (BRAF inhibitor) and added another one (MEK inhibitor).  Unfortunately it took much longer than originally anticipated for the new BRAF inhibitor drug to be shipped and so Kevin continued on his old one (Vemurafenib) along with the new MEK inhibitor.  The new BRAF inhibitor finally arrived and Kevin switched.

Since then his progress hasn’t been particularly promising.  In some ways he seems to be slowly improving and in others appears to be getting worse.  There are some other treatment options that might be available to Kevin that Rachel is researching, however to try those, he needs to be healthier, which they are hopeful this new drug combo would accomplish.  At the moment his quality of life is diminished but, as usual, he keeps plugging along, working as much as he can and barreling through.  Told you. He’s a BEAST.

All that to say, please pray friends.  Ask for healing, ask for his body to respond to these drugs quickly, ask for him to feel well enough to enjoy time with his family, ask for peace and hope for the Hill Family.

In addition, many people have asked how they can help outside of providing financial support to the Hills. Here are a few ways that would really benefit them:

1. Spread the word.  Repost this blog to your FaceBook page, Twitter feed, etc. Copy the link into an email and send it to your non-social media friends.  The more folks praying and supporting this family the better.  And, feel free to forward along the information about the different fundraising events that we have going on as well. (Tomorrow is the last day for the WebOS Auction!)
2. Be Their Hands and Feet.  Rachel continues to struggle to keep up with the trials of daily domestic life in the midst of her own ADD (read this post if you want a refresher), two small children, and her husband’s battle with cancer.  If you have an hour or three to spare, why not spend it at Rachel’s house?  Play with her kids, fold her laundry while her kids nap so she can run errands, bring them dinner and eat it with them – then help put the kids to bed for the night, or share a cup of coffee with Rachel after her kids are down for a nap.  If you’ve got a few skills, they could use the occasionally handy-man, lawn service professional, house-keeper, or baby-sitter too.  I will post a calendar soon where you can sign up for a shift.  Make it a weekly or monthly commitment. Or, if you can only do once in a while, sign up for a day you can do it and when you have free time again in a few weeks or months sign up for another.
3. Pray. As always your prayers and petitions are the greatest need this family has.  Ask your kids youth group to pray, ask your church to pray. Organize a prayer vigil and invite your small group and neighbors.  If you aren’t the praying type, thoughts and notes of love and encouragement would be wonderful.  You can mail them a note at 746 Pearce Street, Atlanta, GA 30310, or you can post something to the Hill Family Fighters FaceBook Page.

Thank you, all, so very much for your prayers and support. They make a HUGE difference.

Let’s pray.

Sarah here.  First I want to sincerly thank all the generous folks who have participated in helping raise financial support for the Hill Family during our “Bridging the Gap” campaign.  As always I am floored by number of people from many parts of the world who choose to give to my sister and brother.  Your giving is such a blessing and an act of loving kindess. 

I also wanted to make everyone aware of the upcoming “Bridging the Gap” Auction that our brother, Josh Marinacci is holding beginning tomorrow, September 15, 2013.  Josh is auctioning off his entire collection of webOS devices and swag to help them cover the bills and fight the cancer.  Of course it would fantastic if you choose to participate, but also we would deeply appreciate you spreading the word by reposting to your FaceBook feed or tweeting about it. 

If webOS gear isn’t your thing, take heart! There will be additional fundraising opportunites such as a benefit concert on October 25th at Community Grounds in South Atlanta featuring the band Rye.  More details to come.

Again, thank you so so much for all your prayers and support.  You help keep Kevin and Rachel HOPEful.

– Sarah Thomas

Hi folks,
As you may know we recently flew to Southern California to meet with my “UCLA Doc” about a clinical trial.  Searching for clinical trials is something we (by we I mean Rachel) does routinely in the Melanoma world.  Because metastatic melanoma is so difficult to treat there is no real “standard of care” for it.  Or at least, the standard of care isn’t very promising.  Rachel found a clinical trial that looked very promising at UCLA and emailed my doctor about it.  At first it looked promising, but almost as soon as we booked our flights the doctor emailed back with the crushing news that I actually did NOT qualify for the trial.  But Rachel and I felt a strong sense that we needed to go ahead with our trip, as planned, and meet with him anyway.  Boy are we glad we did!  At this visit the doctor changed my existing medication (BRAF inhibitor) and added another one (MEK inhibitor).  You may recall these sound familiar to you.  We had tried this before, but at that time, there was a communication / logistical problem getting me started at UCLA and then transferring to Vanderbilt.  Now, however, the two drugs are FDA approved and no longer require bi-weekly follow-ups at UCLA!  Even though I have VERY close family and friends in So. Cal, and an amazing network of supporters, that many cross-country trips would not be sustainable.  Though the data suggests that the combination of drugs is BOTH more effective and less toxic than taking either drug alone, taking the two drugs together is not yet FDA approved.  But because my UCLA Doc is so cutting-edge he’s already prescribed this combination for several patients.  Let’s just say he “works a little magic” with the insurance companies to get them to cover both drugs simultaneously.  So he offered to do this for me as well.   While this is great news, the data also shows that even though this combination is very effective, the cancer will develop a resistance to it in about 6 months and it will no longer be effective.  So “on paper” we have “bought some time” as it were.  But with God I have as much time as He grants me.  As we try to remind ourselves “Praise God for another day”.

For those who aren’t familiar, I’m Sarah, Rachel’s twin sister and Kevin’s sister-in-love (he’s more like a brother than a brother-in-law).  I have asked Rachel and Kevin if I could write a post to ask for your help. I am not a beautifully talented writer like my sister, but even so, please read to the end and should you feel so moved, act.

First, let me back up.

The last three weeks haven’t been easy for the Hill’s, not that the past 2 years were any cake walk either. But the recent news that not only did the TIL trial not work, but that the tumors progressed very quickly, and then there was the brain and bone metastasis.  Well, that wasn’t an easy bit of news to digest.

I have been known to call Kevin a Beast to describe how vehemently he holds onto his ability to work – from home, from the plane, from the hospital and yes, from the ICU.  He is a BEAST.  He is so committed to his roles of supporter and provider for his family and dedicated team member at work, it really has made me think long and hard about my own work ethic.

But as they continue farther down this path, especially with the addition of the brain tumor, the likelihood that Kevin will continue to be able to work diminishes, but the bills and financial needs do not.  Many cancer patients become bankrupt within a short period of time of diagnosis, especially those who are advanced stage.  The Hill’s have been very very blessed to have stayed afloat for as long as they have; which is in no small part due to the extravagant gifts and donations of friends, family and complete strangers.

If I may digress for a moment:  My faith has been deeply strengthened by the AUDACIOUS and RIDICULOUS generosity of the community of people who have rallied around this family.  I start to tear up all over again thinking of the times when we stated a need – a plane ticket, money for gas for a car trip to treatment, help with groceries when money was tight –immediately y’all have responded. Not just responded, but selflessly and freely gave to a family which many of you have never met.  In those ways you have blessed ME, a bystander, watching God use others to lift up and carry the burdens of  my sister and brother.

Now I want to ask you to help carry some of their burden again. But this time, my ask comes with a big goal in mind – Let’s raise enough to Bridge the Gap.  You see, Kevin does not have a short term disability plan, and should he have to stop working, they need to have 90 days worth of bills, expenses and insurance premiums paid. In addition, they have some significant needs right now:

• Rachel and Kevin’s mini-van, fully paid for but quite old with over 180k miles on it, is in need of major repairs.
• The child care that Rachel’s doctors have strongly encouraged her to enroll Jude and Evie in isn’t in the budget.
• And there are sure to be more financial needs in the future.

So here it is. Will you consider giving? Maybe you can’t give a lot at one time, but you can commit to a small monthly contribution.  There are several different ways you can contribute:

• From Your Bank: If you wish to have a monthly payment go to them, you can set up an auto-pay from your bank to Kevin Hill and have it mailed to their address 746 Pearce Street, Atlanta, GA 30310. Or you can make a one time payment via this method.
• From Your Credit Card: Or if you prefer you can make an electronic (credit or debit card) donation to their PayPal account http://hillfamilyfighters.weebly.com/bills–money.html. NOTE: Donation amounts are lessened due to the small administrative fee that PayPal charges.
• Tax Deductible: Or you can make a tax deductible contribution to their Helping Hands account. NOTE: donations to Rachel and Kevin are lessened due to the 8% administrative fee that Helping Hands charges. http://hillfamilyfighters.weebly.com/bills–money.html

In the near future, we will hold fundraising events such as an online auction, restaurant nights where a portion of that days’ sales are donated, etc. that you can participate in and invite your others to as well.   If you or someone you know is interested in helping us with any of these events, please let me know.

Thanks for reading. Thanks for considering giving. Thanks for praying. Your love, support and prayers are a huge part of what keeps Kevin, Rachel, and the rest of our family filled with HOPE.