BRCA Journey Part 3

Hi friends,

I’ve been getting some requests for updates so here it is, because, who doesn’t love a good hysterectomy story?! Am I right? If you haven’t read my previous posts regarding my BRCA1 status you can start at the start here and here.

I had my BSO (bilateral salpingo-oophorectomy (say that 3xs real fast)) with complete hysterectomy in early July. Josh and I drove the 3 hours to St. Louis the night before and stayed in a hotel so we would be fresh for our 5:30am appointment. Dad and Donna wrangled the kids at home while we ate loads of sushi and enjoyed a nice walk around the city. Guys, did you know you can use surgery as an excuse for a date night?! I had no idea. I’ve currently scheduled 15 more surgeries for this year…just kidding…it is tempting though…

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Look at us out with no kids!!!

This might seem a little silly, but I asked Josh and Bear to buy me a stuffed puppy dog to offer me some comfort at the hospital. My mom had a beanie baby dog she took with her to surgery and chemo appointments that she appropriately named Toughie. It just seemed fitting that I have my own ‘Toughie’ as I go along on this wild ride. Big Brother picked him out and named him Spokey and I love him.

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This was taken in Pre-op while we waited for the Doctor. Josh and I made a ton of really inappropriate jokes regarding the surgery. I can’t share them with you, but trust me, we’re real comedians.

Surgery went great. My doctors were incredible and I had the most wonderful nurse. Guys, a good nurse is a treasure – I think that’s scripture right? Well, it should be. Dr. Easley said that everything went well and the biopsy they did, as part of their standard procedure for BRCA patients, came out clean. I did have a couple of cysts, but ‘PEW! PEW! PEW!’ (That’s me pretending to blast them away with my lazer gun) those jerks don’t get a chance to turn into cancer.

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As I recovered at the hospital I had a crazy case of the shakes as the anesthesia wore off and severe dry mouth. I drank a ton of water, peed (that’s a very important moment apparently) and then I was released to come home. Easy peasy lemon squeezy. The 3 hour drive wasn’t too bad until we got to the gravel road leading to our house…it was a bit bumpy for my liking.

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Before

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After. I don’t know what was in that IV but it was some gooooood stuff.

The first few days I needed help getting in and out of bed and I slept a TON. I kept to my pain med schedule, but after about a week I dropped the stronger stuff and only needed Ibuprofen and soon I was getting around pretty good. Recovery was tricky because I felt so good by week 3 that I started to do too much around the house and had to have Josh rush home from work early due to some sharp pain. But all was well; the nurse at my doctor’s office said these pains were totally normal. Still, I slowed it down a bit. I’m super thankful for my Dad, Donna, Josh and my Aunt Renee who all showed up in a big way to help this momma out. A few gals from my Mom’s group also brought by some delicious meals to bless our family. I can’t thank you ladies enough for taking such good care of us! And I’m convinced that the cheesecake my Aunt Enid sent helped tremendously in my recovery!

So…now what? I have at least one more surgery to go, my Prophylactic Bilateral Mastectomy (PBM) that I have tentatively set for mid June of 2018 (I’ll do another post soon explaining that in more detail). I’ve just had a mammogram that came back ‘all clear’ and I will need to have another one done before my PBM. (If I opted to not have the PBM I would need to monitor like a hawk; alternating mammograms and MRIs every 6 months for the rest of my life…no thanks.) I am calling a Dr. soon to set up my first colonoscopy…insert whatever joke you’re thinking of here…I’ll probably have to have one yearly to monitor for colon cancer. Sounds like a real pain in the butt (I’m sorry!! I had to!!) I will also need to see a dermatologist every year to check for melanoma. As awful as this all sounds I’m beyond grateful that I know that I have this gene mutation and that I have this opportunity to be proactive.

I am also super thankful for a Facebook group I’m part of called BRCA Sisterhood. This group has been such a lifesaver for me in terms of becoming more educated on what to expect during surgery, how to navigate life afterward and what areas to be more proactive in. I’ll offer some info below for anyone new to this journey in hopes that it will offer some direction or help. The FORCE website is also a great place to get more info !

Early Menopause : so far so good. I am having hot flashes, but I have been lucky in that they are not bad. Some women suffer terribly from them, but mine are manageable. I bought a fun hand fan to take with me when I’m out and about so I at least have a little relief. It makes me look really cool.

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Exercise: We bought a treadmill in March and I set a goal of walking a mile a day. Realistically I walk 3-5 miles a week, but I increased the incline periodically and was at a 9 incline before surgery. I believe that being a bit more fit was super beneficial in my recovery. Exercising for 30 minutes a day is a great way to stay healthy and keep cancer at bay. I’m back on the treadmill and am working my way back up to a 9.

Scars: I now have 5 small scars in a rainbow on my upper abdomen where the procedure was done (Let me know if you would like to see pics and I’ll PM you). I’m not bothered by scars, but some women are. I’ve seen other women have this surgery with less scarring (the belly button is used) so talk to your Dr. about your options if you are considering this surgery.

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Bone & Heart Health: Having ovaries removed at a young age can increase bone loss and lead to osteoporosis and can also increase risk for heart disease. A lot of women opt to have hormone replacement therapy (HRT) to offset this risk as well as keep menopause at bay. For now, I have opted to not receive HRT because it can increase my risk for breast cancer. I might decide to take HRT after I have my PBM, but for now it is off the table. So what do I do in the meantime?

Every year I will meet with my PCP to have blood work done to check my calcium levels and heart health. I will be taking vitamins and supplements to help strengthen my system to stay on top of my overall health. Here’s what I’m taking:

Women’s Multivitamin

Lysine: strengthens immune system, helps in the absorption of calcium, can help reduce hot flashes.

Black Cohosh: can help reduce hot flashes and aid in…uh…dryness.

Vitamin D3: Per my blood work I was a bit low in vitamin D3 and my multivitamin doesn’t offer as much as my Dr. prescribed.

DIM: Promotes healthy hormonal balance and produces good estrogen and decreases bad estrogen

Melatonin: Y’all this has been a God send! I haven’t slept well since I was pregnant with Bear and I’ve gotten some really great sleep since starting on this.

Fish Oil: promotes heart health

Almond Milk: I’m drinking some every day in a super yummy smoothie to boost my calcium consumption.

Peppermint Essential Oil: I’ve started applying a drop to the inside of my ankles daily to help with hot flashes and it seems to be working. I didn’t have one hot flash last night!! We’ll see if it continues to work.

Well, that’s about it for now. As always, you guys are the best. There are a lot of women going through this who just don’t have much support or encouragement. I’m so blessed by you all. Your prayers, texts, gifts and you just reading this means the world to me. Thanks for going on this journey with me friends! And if you have any questions please don’t hesitate to ask!!!!

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BRCA Journey Part 2

Friends, I am so overwhelmed by your love and support for me and my little family. I’ve always known that I have the best friends in the world and you just keep confirming it over and over. Thank you for all of your offers to help when we need it, phone calls to check in on us, texts, gifts and prayers. I love you more than I could ever say.


So, here’s the rundown.

On Thursday morning at 6:30am I opened the car door to start on my way to St. Louis. My dreamboat of a husband surprised me with a birthday/road-trip basket in the front seat complete with snacks for the journey, hand written bday card, and FitBit. 

Swoon! He’s a keeper. I had to run back inside and give him another smooch before leaving.
 


I popped in my favorite ‘Jimmy Eat World’ mix and headed toward St. Louis for my first doctor’s appointment. I stopped in Rolla to pick up my Aunt Renee (my Mom’s sister) and we zipped on up to the Women’s Oncology Center. (Thanks for coming along Renee! It was so great spending time with you and meant a ton having you there.)

We met with Dr. Kevin Easley, a Gynecological Oncologist, and discussed my BRCA1 status and desire to start preventative procedures. Dr. Easley was great; I felt very comfortable with him and his entire staff. He jokingly deemed me a ‘boring’ patient (a good thing!) and went over my options.

  • Have tubes and ovaries removed only (salpingo-oophorectomy). There are some possible pros to electing to choose just this procedure, but a major con is that it leaves a higher risk for peritoneal cancer (cancer of the stomach lining).

  • Have a complete hysterectomy (removal of uterus & cervix) as well as a salpingo-oophorectomy.


To reduce my risk as much as possible I have opted for a complete hysterectomy with salpingo-oophorectomy. Dr. Easley went over the entire surgical procedure which will be done laparoscopically and will most likely be an out patient procedure. A biopsy will be done on what is removed while I am still under anesthesia to verify that no cancer is present. We don’t anticipate finding any cancer; the biopsy is just standard procedure. If cancer is found in a patient during surgery the Dr. can immediately begin a more intense treatment immediately while the patient is still under anesthesia.

So, my surgery date is set for late June. I could have the procedure done earlier, but we have a family trip set for April. Also, in early June my dad is getting married to his sweetheart, Donna, and I do not want to miss out on wedding planning!! Josh will be taking a week off for the surgery and Dad and Donna will be spending their 2nd honeymoon taking care of me and my boys (so romantic!). Knowing that PapaDonna (as the 3 year old calls them) will be here during this time puts me at so much ease. We are so incredibly blessed by them.

My next step is to find a breast surgeon to discuss the possibility of a double mastectomy. This is a little bit trickier for me as the surgery and recovery is much more intense and there are so many options for reconstruction. It’s a bit overwhelming, but I believe God will guide us through all of this just as He does in everything else.

Josh and I have complete and total trust in God throughout all of this. Our faith is a huge part of keeping us grounded and in helping us not let fear overcome us. We don’t believe in making decisions based on fear, but we do believe that God has given us wisdom to help guide us. We don’t have all of the answers and we haven’t made all of the decisions yet, but we have total peace about being proactive. We’ll do our part and trust God for the rest.

If you feel led to, please join us in praying for the following:

  • An uncomplicated, boring surgery with a speedy recovery.
  • Wisdom and peace for decisions we will be making in the future.

  • That this guy will pick up on potty training quickly and with ease. Eeeeek! We’ve just started and he’s not much of a fan. Hopefully he’ll have it locked down by June.

  • That this guy will be weaned from nursing soon. I’ve been “trying” to wean him for a while, but he’s my last baby. Momma is having a harder time with it than he is.
  • My biggest concern is how my body will be affected after surgery. I’ll be thrown into menopause, but I don’t know what that will look like for me. It’s harder on some women than others. Please pray that I adjust easily.


***If you are concerned that your family might have a BRCA1 or BRCA2 mutation the best thing to do is get test. You can call the cancer center at your local hospital and ask if they offer testing or call an oncology center in your area. If you live in the South Eastern Missouri area The Women’s Oncology Center offers BRCA testing and genetic counselors are available to go over your results with you.***

I can’t say enough how much we appreciate you all and all of the encouragement you’ve given us. We are just the luckiest.

BRCA Journey Part 1

On July 4th 1998 I stood on the front porch of my parent’s house in Maysville, KY and cut off my 46 year old mother’s thinning hair. Earlier that year Mom had been diagnosed with stage 3 ovarian cancer. She fought hard for the next 10 years, taking every chemo treatment available until the treatments ran out along with Mom’s time here on earth.

Mom's haircut

I’m not sure what spurred it on, a nudge from her doctors or just her own curiosity, but Mom started researching our family history of cancer and found that her father’s side of the family was drenched in breast cancer, ovarian cancer and stomach cancer (most likely ovarian as well). Years later her half sister, Sandy, was also diagnosed.

In 2002 Mom underwent BRCA genetic testing to see if our family’s history of cancer was indeed genetic. Mom tested positive for two gene mutations confirming her genetic predisposition to cancer. Because Mom was a carrier of the mutations, there was a 50% chance that my sister and I were also carriers. We were both tested; my big sis got the luck of the draw and tested negative (yaaaay!) while I tested positive for one of Mom’s mutations (booooo!).20161124_133441.jpg

I want it to be noted that I don’t hold any negative feelings toward my sister for stealing all the good non-cancer genes. Sure she also stole the ‘I look 15 years younger than I actually am’ genes and the ‘I can multitask like a bad mamma-jamma’ genes, but I’m taller, I don’t sunburn, and eating ice cream has never thrown me into an asthmatic attack so… I call it evens. Besides, we both got the ‘derpy’ genes.

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I’m sure you’re thinking, “Afton, all of the Mutants I know have really incredible super powers. Does your mutation give you super strength or the ability to over consume pizza and still fight crime?” Sadly, the answer is no. While my pizza consumption is on the higher end for someone my size I have not acquired any super powers. I guess you could consider me more of a ‘Rogue’, because let’s be honest, her mutation sucks too.

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What the BRCA gene mutation DOES give me is:

A 55-65% chance of developing breast cancer by age 70.

A 35-70% chance of developing ovarian cancer by age 70

*Men who carry the mutations are also at a higher risk for breast cancer and prostate cancer.

Guys, I KNOW!! I’m totally being a Debbie Downer,

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but I want you to know this stuff because:

A) If your family tree has a crazy amount of breast, ovarian and or prostate cancer, you might have a greater risk, but you are not alone! And there’s something you can do about it. Get tested! Take control of you future.

B) There’s no good screening method for ovarian cancer. By the time most women start experiencing warning signs, if ever, it’s too late in the game.

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C) The risk involved for those of us with the BRCA mutation is just too high to ignore. This is why most women with the mutation opt for preventative hysterectomy and double mastectomy. (If you’re thinking to yourself, “Wow. That seems pretty extreme.” You’re right. It is extreme. And I pray that someday this won’t be the norm, but for now these preventative surgeries are the best options the medical community can provide.)

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D) I will need your help! Meals, encouragement, support for Josh and the boys, maybe a hair wash.  And prayers, lots of prayers.

DD) If I look different (ahem) the next time you see me you’ll know why.

So, here I am, 4 days away from my 36th birthday. In 3 days I have an appointment at the Women’s Oncology Center in St. Louis to schedule my preventative surgeries and discuss my options. I’m not 100% sure what that will look like. I’m not afraid, a bit anxious, but also really ready to start on this journey. If these surgeries will provide me the opportunity to someday sit on the back porch with old man Josh Nordean while we watch our grandkids play in the yard then I’ll take it, all day everyday.

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Thanks for reading friends! I covet your love and support. And cheesecake. If you have any cheesecake, I covet that too.

 

Baby Cousins

Amber Afton Volner Lindsay Bohnert

 

When I was 7 years old my baby cousin Lindsay was born. This is a photo of me holding her with my big sis, Amber. She was so sweet and I loved her. A few years later she developed a bit of sass, charging a dollar for kisses and referring to everyone as ‘Little Missy’. But she was still adorable in her flouncy 90’s dresses with her beautiful big eyes. Fast forward 20 something years: she’s married to a handsome tall drink of water named Tim and they are soon expecting their first baby!

As luck would have it I already had the perfect quilt top finished in my WIP (work in progress) pile. 20170213_102605.jpgI found the cutest grey hearts fabric for the backing and I got to work quilting it.

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I did a double row of quilting and really like the way it turned out.

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Look at those hearts! (insert all the emoji heart eyes)

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I was short on time so instead of making binding, like I normally do, I just used the backing as the binding. It’s sort of unconventional, but turned out pretty darn cute.

I can’t wait to meet baby girl. She’ll probably have a little bit of sass and a whole lot of sweetness just like her momma.

A Little Loominous

When we found out that baby #3 was a boy I immediately set out to find the perfect fabric for his quilt. Boy fabric is tricky to me. I could spend millions on all of the pretty florals out there but I’m just not that into a lot of what’s offered up for boys. But when I saw Anna Maria Horner’s Loominous collection I knew I’d found a winner.

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Aren’t these patterns yummy?! And those colors? Gaaaa! 😍

I had originally planned on using a random half square design, but once I got all of the blocks sewn and up on my design wall it all just looked too messy for my liking. After moving the blocks around in a few different designs and with some help from my good friend Jennifer I finally settled on a design. Unfortunately some of the fabrics I purchased didn’t make it into the final quilt, but I’m sure I’ll find good use for them in another project.

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What do you think?

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I’m loving it.
Here’s an in process shot.

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Taken after Jennifer helped with the design and obviously before I cleaned my house.

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I think he likes it.

New Addition

I have to admit that I haven’t done as much sewing as I wanted this past year, but we’ve been a little busy.

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We welcomed brother #3, who we lovingly refer to as ‘Coons Loons’, to the family in October. Big Brother started calling him that while I was pregnant so Coons it is.

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He’s pretty darn cute so we decided to keep him.

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And his big brothers adore him.
When Big Brother met him for the first time he said, “He’s so sweet. His feet are pruney.”

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Here he is perfecting the ‘mean mug’.

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I couldnt help but make a side by side of newborn pics of all three boys. Can you tell who’s who?

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He doesn’t look much like his big Bros now though. He’s definitely got his own look.

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And I finally got a good shot of the whole family on Mother’s Day.

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And just for fun I thought I’d throw in this year’s Halloween costumes.

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Aren’t they ridiculously cute?! Big Brother loved trick or treating while The Hoss basically played the iPhone in his stroller and tried to take his mane off. But we got these adorable pics so it was well worth it.

I did manage to sew a couple of quilts in the past 9 months. Hopefully pics will be up soon.

Travel Baby

There’s this super fun, outgoing, sweet and cool girl I met about 8 years back when I first moved to Oklahoma. I had just started a new job and Sarah was our weekend receptionist; she was also a student in the youth group Josh and I volunteered at. Over time Sarah started working with me more and I began to just adore her, I mean, she’s literally the most fun. In exchange for being my friend I bestowed on her the great honor of bringing me KitKats while I was pregnant. I would also sing to her on demand (I’m a super good friend). 

So this girl I met all those years ago has grown into this incredibly smart, capable woman and now she has added ‘Mommy’ to her list of accomplishments and I am giddy. I really love it when my friends have babies, because I love babies…and you know why else? Yeah, you know why…BABY QUILTS!

Sarah knew the general idea of what she wanted for her sweet little guy. With the fabric she picked I cut out the squares and arranged them in different patterns so she could choose her favorite.  

I love how different each layout looks.    
   

After much deliberation😉 she chose a winner.

 
  
 Backed with Minky 😍

  
How great is that aviator fabric? Swoon.  
So glad I got to make this precious gift for such a beautiful friend.

Bonus leftover Minky burp rags. Jackpot.

  

Granny Volner’s Cream Cheese Apple Pie

It’s the night before Thanksgiving and I’ve just sat down. My day has been full. I’ve conquered a trip to the grocery store with the 4 year old, repeatedly removed the 1 year old from the kitchen (my teaspoon and Tablespoon have disappeared in the process. I’ve checked all of his favorite hiding spots to no avail), helped my husband as he bought us our first van (I’m a van mom now ya’ll), took a 3 hour nap (because new baby) and made some very delicious smelling pies.  Cream Cheese Apple Pies and they are as heavenly as they sound.

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Granny Volner’s Cream Cheese Apple Pie, bottom left

I’ve been asked for the recipe, because cream cheese…and apples…and pie. My Granny Volner always made this pie at holidays and she passed on the recipe to me a few years back. It just wouldn’t be very Christian of me to keep it to myself, so pull out the Kitchen Aide and let’s get cooking.

Granny Volner's Cream Cheese Apple Pie

  • 2 Tbs flour
  • 1/8 tsp salt
  • 3/4 cup sugar
  • 1 egg
  • 1 8oz. package Cream Cheese, softened
  • 1 tsp vanilla
  • 2 1/2 cups diced apples
  • uncooked pie crust of your choice

Mix flour, salt & sugar together. Mix in egg, cream cheese, & vanilla until smooth and well blended. Add apples and mix until coated. Pour into unbaked pie crust and bake at 400 degrees for 15 minutes. Reduce heat to 350 degrees and bake an additional 30 minutes. While pie is baking, make the topping.

Topping

  • 1/3 cup sugar
  • 1 tsp cinnamon
  • 1/3 cup flour
  • 1/4 cup butter, softened

Remove pie from oven and sprinkle with topping. Bake an additional 10 minutes at 400 degrees. Die and go to heaven

Let me know how it turns out for you! And Happy Thanksgiving.

 

 

 

Simple Strips

I love a simple strip quilt. They are fun to make and always turn out so cute.  

 
 I started this little gal a couple of years back. That’s right, I said a couple of years. I got the top pieced and then folded it up, put it away and let it sit for waaay too long. I have a tendency to get a bit overwhelmed with anything bigger than a baby quilt, but about 3 months ago I decided to pick this one back up and get her quilted. So glad I did.   

I’ve recently started making my own binding and I will never go back to using store bought. It’s way easier than I had initially thought and gives me so many more options. How cute is this little floral detail?

 
I’m in awe of the uber talented quilters who have mastered the art of free motion quilting. And while I like to play around with it a bit here and there, I’m just a sucker for a straight line. Symmetry is my lover.

    

  

  If you can’t live without her, she’s up for grabs. Twin size, roughly 63’x82′. $225 and she is all yours. Let me know if you’re interested.

 

  

Plus One

Do you guys know Matt and Emileigh Vasquez? If you don’t, you should. They are two incredibly compassionate people working toward eradicating human trafficking through prevention, action and aftercare. Check out the work they are doing at The Cause Tulsa. 

Matt and Emileigh are also expecting! 

  
Look at how cute us preggos are. Isn’t Emileigh glowing?

Josh and I have known Emileigh going on about 8 years now and we’re feeling a little old considering that Josh was one of her high school teachers! She’s always been such a sweet, creative and fun gal and I don’t think we could adore her more, so when she asked if I would make their newest addition a sweet little quilt, how could I refuse?

Working from a picture they found online and some fabric they picked out, here’s the final result.

  

  If you like the pattern, you can find a tutorial here.

  

  

 

I love the way it turned out. Hopefully sweet Baby V will love it too!

Coast To Coast Central™

Home of the #CoastToCoastChallenge™ - © Lindsey Eryn Clark & Lauren Palomares. All Rights Reserved.

Coast To Coast Central™

Home of the #CoastToCoastChallenge™ - © Lindsey Eryn Clark & Lauren Palomares. All Rights Reserved.