Cover Girls

I am honored to share with you our Cancer Today cover story! cancer-today-coer

Over a year ago, Senior Editor Marci Landsmann read my surrogacy blog post, and contacted me about telling our story. She wanted to focus on our quest for fertility throughout our cancer journey, and after a few interviews, said she’d be in touch for an update once our future children were born.

Shortly after Maggie and Hope arrived, Marci reached out again, and talking with her was like catching up with an old friend. I am extremely grateful for the candid, beautiful, poignant way she told our story.  I’ll admit she made me cry…several times. This story will forever be cherished by our entire family, but it will also provide courage and hope to cancer patients as they struggle to realize dreams of their own families. Thank you, Marci.

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Hey girls, look what came in the mail today!

Also a big shout-out to the photographer, Dawn Bowery. This lady is a rockstar. She and her assistant, Marion, made the shoot so fun, dealt with 2 squirmy three-month-olds, and managed to capture some gorgeous photos of our family. Thank you, Dawn.

I am continually amazed where this journey has taken us.  Thank you to Cancer Today for making this moment possible!

xoxo – EmBen

 

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Mommy reads while the girls devour the article.

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Hope (L): “Wow, Mommy – this is amazing!” Maggie (R): “Check ‘cover girl’ off my bucket list!”

 

The Waiting Game

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On the way to LAX!

The babies are almost here!

On March 30th, I flew to Kentucky to spend the final weeks of the pregnancy with Angela and her family.  Miles drove me to the airport, and we confirmed his plans to join me when it appears the birth is imminent.

I’ve been in Lexington over a week, spending the first few days at Angela and Aaron’s home. My time has been filled playing games with their three sweet boys, and of course spending as much time as possible with Angela and the “bump.”  Feeling the girls kicking and hiccuping and moving has been absolutely surreal.

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My mom caught this special moment as we were watching tv – the girls had hiccups!

My mom has come from Memphis, and we’ve settled into a nearby rental.  The waiting game has begun!  In the meantime, we’ve been making meals so Angela doesn’t need to cook, tagging along to preschool pick-ups and soccer games, and helping Angela get as much bed rest as possible by binge watching Gilmore Girls. Only 136 more episodes to go.  Thanks, Netflix!

So far we’ve had several doctors appointments, and all news has been spectacular.  The girls are developing well, and it looks like Angela will be able to carry them a few more weeks to put on the finishing touches.

I am not a person who gets overly stressed in difficult situations (see: me sleeping soundly every night since my diagnosis).  But, I think somewhere, deep inside, I have been worried about these girls. I was worried early on we might lose one, or worse, both.  I was scared they might have a genetic abnormality.  I was terrified they’d come far too early, and our first few months would be NICU visits and constant fear.

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So grateful I finally go to be in a “bump” shot!

But being here with Angela and seeing all she has sacrificed for us, and how well she’s been caring for herself and for these babies, just shows me that as far as she was concerned, I had no reason to be worried at all. On top of running her household, and caring for her three (active!) boys, I am in awe of the grace she shows in carrying our precious cargo. She never seems to tire, and she always has a smile on her face.  She has treated this pregnancy with the same tenderness and love I know she gave to her own children, and that is a gift we can never repay. The gratitude Miles and I feel towards her knows no bounds, and we couldn’t have asked for a sweeter, more perfect person to share this experience with, and to bring our girls into the world.

Babies: Stay in there and bake those chubby little Buddha bellies as long as you possibly can. But know that I’m out here, just on the other side of Angela’s [amazingly-small-for-twins-and-incredibly-un-stretch-marked!] belly, feeling your beautiful movements, and just aching with excitement to see you.

Mommy loves you!!!

EmBen

For My Love

When I met my husband, Miles, in college, I was independent, carefree, strong-willed. I wanted a career, and I wasn’t sure marriage or children fit into that. But Miles – he made me laugh like I’d never laughed before. And that’s all it took. His desire for a whole basketball team of kids running around was infectious, and within weeks of dating I knew he was The One.  I was lucky that he felt the same, and am so grateful this streak of luck continues all these years later.

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Miles carried me across the threshold of the little cottage we rented after college.

After college, we moved in together, and I got that business-suit-wearing career I’d always dreamed of. Throughout our 20s we worked hard and played hard, enjoying our “kid-free” time.  We got married at 26, and agreed to take a few years to soak up married life, getting in as much travel and adventure as possible.  

When we were 28, “the plunge” was something we were both ready for. Sure, it wasn’t easy giving up the idea of our carefree life, but together, we were ready for the change and responsibilities that a family involved.

Kickin' Cancer's AssInstead, we got cancer. I say “we” because when I was diagnosed with Stage IV non-smokers lung cancer, I never once felt like I was on my own. This diagnosis affected both of us, and every step was made together. Sure, I was the one with the chemo IV in my arm – but Miles was the one lugging half our house into infusions in order to make me more comfortable: a laptop for movies, earphone splitter so we could laugh at comedies together, pillows and blankets for comfort, water and snacks.

Miles allowed me to focus on my treatments, and on beating this beast, while he took care of literally everything else.  He continued to work, but cut back his hours so he could be at every appointment, furiously taking notes and asking questions. He stayed up long after he’d tucked me in – where he guided me through meditation to ask my body to kill the cancer – and would research obscure medical journals from around the globe in search of new treatment options for me.

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Only 2 months into treatment, Miles made this doodle for me, depicting my oncologist, Dr. Reckamp, telling me “Emily, you are NED!” At the time, this felt SO far away. A pipe dream. But, Miles believed this was our future; that faith gave me the strength to make it our reality.

He refused to believe the dire predictions of my diagnosis, and shielded me from all the scary statistics. He knew I needed mental peace in order to win this battle, and I trusted him enough not to consult “Dr. Google” on my own. He scheduled second and third opinions, held my hair back as I hugged the toilet bowl, and got me triple chocolate protein shakes when his research showed that I needed to gain some weight before starting chemo. He called those extra pounds my “chemo cushion” and believe me, I wasn’t complaining.

If I was sick, Miles forewent his beloved Steelers football Sundays. If the only thing I was craving was English muffins and applesauce, he’d drop whatever he was doing Hospital_1to go to the store. He made sure our beloved pup, Ginny, was always on hand to snuggle with me on those particularly difficult days. Even though it doesn’t come naturally to him, he accepted the help that family and friends were offering, knowing that it would help him be a better caregiver to me. When we found out I was allergic to the flowers friends were sending, he contacted our amazing support network to thank them, and request that any further gifts be non-floral. He carefully taped each and every get-well card I received onto our dining room walls, creating a wallpaper of hope and encouragement.

I owe the past 3 cancer-free years to my loving husband. He scoffs when I say this, as if his role has been minimal simply because I was the one getting poked and prodded and poisoned. But his role was anything but minimal. He found the surgeon who would operate on me when no one else would, giving me the cure we desperately desired. When radiation knocked me for a loop and I couldn’t get off the couch for months on end, he nursed me back to health, cheering me on as I took each small step toward recovery.

Miles decided, each day, to take some part of the burden off my shoulders.  He never gave up hope, even when the odds were so stacked against me. He never hesitated, even when we had no idea what the future held, or what life after treatment might look like.  He kept his promise that “cancer would never take one day away from us” by never letting me doubt, and always filling me with hope.

And through it all, he continued doing what he does best: he made me laugh. And for me, that’s all it took.

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Before we were even pregnant, Miles surprised me with this shirt for my birthday. I think my grin says it all!

It’s taken a bit longer than we expected, but Miles and I are finally back on track with the life we always imagined. This April, “the plunge” awaits us – as many of you know, we are expecting twin girls via gestational surrogate. I know we are in for a doozie. But, through all the sleepless nights ahead, the midnight feedings, and the new-parent blunders, I have no doubt that Miles will continue doing what he’s always done: he’ll be there, right by my side, for whatever comes our way. And, inevitably, probably even in the middle of an epic double diaper blow-out, he’ll make me laugh. These little girls have no idea how lucky they are – they’ve got the best daddy in the world.

I love you, Miles. So much. Happy Valentine’s Day, baby!
Emmy

Reaching new heights…I’m on a billboard!

Check out this CBS LA News piece that aired yesterday (click on the video below)! Honored and grateful that CBS is shedding a light on young lung cancer by highlighting me and my friend, Sandy Jauregui-Baza.  We are both hopeful that this piece will help increase awareness for all lung cancer patients.  Thank you to the Bonnie J. Addario Lung Cancer Foundation (ALCF) for sponsoring this billboard campaign!
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The ALCF’s billboard – I can’t believe we are up there!

 

BIG Baby News (like really REALLY big)!

Last April, after learning I was two-years cancer free but unable to carry a child, I posted on this blog to ask if anyone would consider being our surrogate. It was a bold move, and it was hard not to consider that I might be left without a response, and quite embarrassed. Within hours, however, volunteers started responding with heartfelt enthusiasm. Over the next few weeks, more than a dozen of you offered the most unbelievable sacrifice. Still today, we are in awe and overwhelmed with gratitude.

And the surrogate is . . .

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Angela and Aaron, with their adorable boys, Austin, Aiden, and Alexander.

Half a lifetime ago, as a high school junior, I won the Idaho State Track Championship. My coaches, Angela and Aaron Stark, were a young, enthusiastic
couple with whom I remained friends well after graduation. They now live in Kentucky, where they are parents to three darling boys; and as luck would have it, both are readers of the blog. When Angela made the decision to help me become a mother, her enthusiasm was irresistible. In true coach fashion, her email subject line read: “Let’s do this!” And so we did!

Angela is Awesome…and fertile 🙂

Miles and I hit the jackpot with Angela: she is pure love. She has made the cross-country trip to LA multiple times, undergone extensive testing, pumped herself with hormones, and was eager to start anew when the first attempt was unsuccessful.

Angela somehow continues to juggle a new job, parenting, running marathons, and chairing fundraisers, while going out of her way to keep me connected with all she is experiencing. We text, we call, we message, we email. Angela and Aaron were even in our kitchen via FaceTime when we learned the news she was pregnant.

Just a few weeks ago, Miles and I were in Kentucky with them for the first ultrasound where we saw . . .drumroll, please . . . THE TWINS!

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Every Wednesday, Angela sends us a Baby Bump picture update. Last week, the twins were as big as peaches…

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…and at 14 weeks, they are now our little Lemons 🙂

 

 

It takes a village…

They say it takes a village to raise a child. In our case, it took a village to create one. . . actually, two!

When I was diagnosed with advanced lung cancer in June 2012, news spread rapidly among family and friends. We were incredibly touched by the outpouring of love and support we received. We welcomed meals and doggie care, but felt a fair amount of guilt accepting the checks people were sending.

However, within weeks, the financial impact of a cancer diagnosis became downright scary. We soon learned that care that goes “above and beyond” most often also goes beyond insurance coverage. An initial test for genetic mutations at $7,000 was the eye opener. Clinical trials – often the only place to get access to cutting edge new treatments – seemed likely in my future. Many of these, like immunotherapy, could only be found abroad at that time. Furthermore, Miles and I were determined to preserve our fertility, and were soon embarking on the significant cost of this endeavor.

Today, my medical treatments have exceeded more than $1,000,000. We are fortunate that a vast majority of this has been covered by health insurance, and thanks to your support and donations, Miles and I have been able to fund our fertility treatments.

Thank you from the bottom of our hearts. Your donations allowed us to preserve the 9 embryos that provided me with hope when I needed it most. They gave me the strength to fight through difficult treatments. And today, as two of those embryos are growing, you are giving us the family we have always dreamed of.

Miles and I are overjoyed to share this incredible news with all of you. Thank you for your support, your contributions, and your love. We wouldn’t be here without you. Team EmBen rocks!

Living in the Moment,

Emily & Miles

The Patient Perspective

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This past week, I was given the honor to deliver the keynote address at the Opening Ceremonies of the World Conference on Lung Cancer from the International Association for the Study of Lung Cancer (IASLC) in Denver.  In front of about 3,000 oncologists, surgeons, radiation oncologists, researchers, patients and pharmaceutical representatives, I shared not only my story, but the patient perspective, focusing on the need for aggressive treatment and pushing the boundaries of the standard of care.

Below is a video of my speech – make sure to watch through to the surprise ending!

 

If you are under 40 and have lung cancer, PLEASE sign up for the ALCF’s study, Genomics of Young Lung Cancer. It is open to young patients form around the world.  More information HERE.

Much love, live in the moment.

EmBen

Making Dreams Come True

Cancer evokes paralyzing fear as it threatens your entire future.  Life milestones, once assumed inevitable, become unlikely possibilities.   More, your mere existence hinges on factors outside of your control.  The fear can be suffocating; and not just for the patients, but for all those around us.

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Hanging out with Bonnie and some of the awesome patients she’s connected me with – Corey Wood and Sandy Jauregui-Baza.

Through my position at the Addario Lung Cancer Foundation (ALCF), I am in contact with new patients each week.   The most common question I have is not about side effects or treatments, but rather “How do you deal with the fear?”

Miles often tries to paint a picture that I am stoic under all circumstances.  Almost inhuman with my composure.  I’ll admit his unwavering confidence in my own confidence makes me stronger.  But he forgets that on the day of my diagnosis, it was me he found curled in a ball, sobbing in the shower.  Fear had crippled my legs.  And there, under the falling water, I lay completely vulnerable without any strength.  I was suddenly fighting for my life and I felt unprepared, weak, and frightened.

That night, Miles and I made a vow: Cancer would never steal one more moment from us.  We began to plan and talk about our future…a future without cancer.   Each night, we envisioned the same three scenarios:

One, we would give back and help other patients.  The care and support we were receiving from oncologists, surgeons, family friends, and the ALCF was extraordinary.  We wanted to ensure all patients had the same opportunities and advantages that I was receiving.  And today, thanks to Bonnie, I have been given the opportunity to fulfill this promise each day through my work with her foundation.

Two, we would join in celebration with our family and friends to thank them for their overwhelming support.  You all provided us with the greatest gift: love.  We felt it around us constantly.  It gave us such strength.  It inspired us with so much hope.  It bolstered our fight.   So, we started planning a party that we would throw when I was two years cancer-free to thank everyone who helped make me a survivor.

To be honest, in the summer of 2012, a celebration party felt like a very distant dream.  There was so much to get through in the meantime: chemotherapy, finding a surgeon, traveling to New York for treatment, enduring radiation, a long and difficult recovery, and finding a new “normal.”  Whenever things got tough, Miles would remind me of how incredible our 2 Year NED party was going to be.  Often at night as I struggled, he would start imagining the event.  And to make me smile, he kept making it more and more grandiose. No, this was not going to be a typical summer BBQ.  It was going to be a fancy affair…Lights illuminating the night sky…DJ spinning dance tunes…Caterers walking around offering appetizers with fancy names. He would survey the imaginary crowd of guests and tell me who was there.  It would make me giggle with excitement.  I wanted that day to be a reality so badly.

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Some of the gang celebrating out on the dance floor!

And on May 23rd, it became one.  Miles and I threw the 2-Year NED party of our dreams.  And let me tell you: IT WAS WORTH THE WAIT!

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My boyfriend, NED, even made an appearance. And boy was he popular (see pictures below)!

That night, we welcomed about 75 of our dear family and friends to our home to celebrate this momentous occasion. Just as we had imagined over the past three years, the party was spectacular.  We were surrounded by so many people that we could never truly thank in words.  We had family, friends from college, workmates, college coaches, and even Dr. Reckamp and Carrie Christansen, my care team from City of Hope.  And under the glow of about 5,000 white Christmas lights, we ate, drank, and danced the night away in honor of this life event.  In the end, as hard as cancer tried to take away my life milestones, all it did was create new ones to enjoy.

Three, we would spend each night dreaming about our future family….which may not be such a dream anymore…stay tuned for that in the next post! 🙂

Much love. Live in the moment.

Emily

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Pause. Play. BABY!

It was the first scan that I was nervous about…I mean really nervous.   So much was riding on this.

Statistically, 2 years of clean scans showing No Evidence of Disease (NED) represents a significant milestone and increase in survival.  But to be honest, as I’ve stated many times on this blog, I’ve never been one to be too hung up on the statistics.

Rather, the 2 year mark was so nerve-wracking because it signified something even bigger…something that cancer so cruelly pauses upon diagnosis…it presented me with the opportunity to finally push play on my life again.

Since my diagnosis in June of 2012, I’ve been the cause of so much stress and pain on my family.   Of course, they all never complain, but I could easily see the effects.  It’s not hard when Miles is continually gripping his chest and trying to beat the ulcer out of his stomach.  Or, when I call my grandparents and my grandmother cries each time she says goodbye to me.   I hate seeing my loved ones hurting over me.   I once asked Miles to just relax and breathe easy, and he told me, “I’ll breathe normally when you’re 2 years NED.” So, I internalized his comment and earmarked that 2 year date.  Each night, I’ve prayed and hoped for it to come sooner, as with it, I hoped it would finally bring peace to my family.

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We turned the pictures of our embryos into art, a constant source of motivation.

Perhaps what loomed largest though was the opportunity to start a family.  The first step we took after diagnosis was preserving our fertility.   Those nine embryos became my motivation.   I was no longer just fighting for myself.  I was fighting for my future family.   Each morning during meditation I would picture and see this family.  Hold them, love them, imagine a life with them.  It fueled me.  It inspired me to fight harder.   But, we were instructed not to consider a family until 2 years of clean scans, so that dream, like most things after diagnosis, was put on pause.

So a few weeks ago, as we sat there in the doctor’s room waiting for the results of my two-year scan, I could hardly control my emotions.

And then Carrie, our wonderful nurse practitioner, walked in and in her classic nonchalant way, looked at me and said, “You’re fine!”

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With my amazing care team,         Dr. Karen Reckamp, and Carrie Christiansen RN, MSN, C-FNP.

I broke down.  I sobbed.  I fell into Miles and cried.  I let years of frustration and fear out of me.  He held me and then whispered in my ear, “You’re going to be a Mommy.”   And I cried even more, but with the biggest smile on my face.

As we shut the car door, ready to head home after seeing Dr. Reckamp (who, by the way, switched me to the twice-a-year schedule for routine scans – YAY!), I paused  and looked over at the fountain in front of City of Hope.  Nearly three years ago, Miles and I and our families had held each other at that fountain after learning I had Stage IV lung cancer.  Today, I looked at that same fountain, and just reeled back and screamed, “I’m NED!!!!”

It takes a village to raise a child.                     It takes Team EmBen to grow a baby!

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Baby pics from Miles and me at around the same age. I’m so excited to have a little cutie like him!

Miles and I are beyond excited to push play again on life, and start our own family.  But the reality is, we can’t do it alone: we will need a surrogate.   The hormone surges caused by pregnancy have been shown to be linked to recurrence of lung cancer.   As such, I have been advised by my doctors to not carry our embryos myself.

Since Team EmBen has been so resourceful and supportive in the past, we are reaching out to all of you for help in finding a surrogate. We would love to undergo this process with someone who comes from a trusted source.  We understand this is such a large ask of someone, as a pregnancy is a considerable undertaking.  However, if you know of anyone who may be interested in providing this immeasurable gift, we would love to hear from them.

Some questions that may arise:

  • When are we looking to have our child?

Ideally, we are hoping to perform an embryo transfer as soon as possible, preferably this summer.   So, yeah, that’s soon.

  • Is there compensation?

Yes, of course!   Money for this process was so thoughtfully donated to us at the time of my diagnosis.  We would love for this money to go to someone we know (or someone who knows someone we know!), rather than an agency.

  • Who are you looking for?

Ideally, surrogates have no major medical issues, have at least one of their own children, had pregnancies and deliveries with no complications, and are physically healthy.

  • What would be expected of me (surrogate)?

Essentially, there would be 3 appointments in Los Angeles.  Each appointment would be a month apart.   You would be able to choose your own OB/GYN at home, and the baby would be born wherever you are.   In the meantime, your only job would be to have a healthy pregnancy.

 If you, or anyone you know, may be interested, please email us at eebennet@gmail.com.

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Sitting by the fountain at City of Hope, taking a moment to celebrate this wonderful milestone.

As ever, thank you all for joining and supporting us on this journey.  We are so grateful to our loving Team EmBen supporters!

Much love. Live in the moment.

Emily & Miles

 

“I Feel Normal”

It wasn’t until our flight to New York City that the reality of what she was embarking on finally set in for EmBen.   Midway across the country, thousands of feet in the air, she looked over at me.  Fear had whitewashed her face.   She began to cry, and asked, “Will I be okay?”

Since her diagnosis, EmBen had been hell-bent on cutting the cancer out of her body.  Despite every oncologist and surgeon stating otherwise, she refused to acknowledge that a Stage IV diagnosis restricted her from surgery.   It was her plan and she knew it would be a reality.

When Dr. Flores presented the opportunity for surgery in New York City, she jumped all over it.  EmBen was ecstatic.  She flooded him with questions about how quickly she could have the surgery and any potential roadblocks.  Not once did she ask him a question about surgical success rates, past patients, or life limitations with one lung.  She had blinders on and she was on a straight sprint for survival.

For the next few weeks, my mother and I prepared by spending countless hours researching the internet about complete lung removal surgeries and recovery.  Meanwhile, EmBen planned what tourist attractions she wanted to see while in NYC.  She had this aura of confidence and trust.   It was highly impressive, yet almost inhuman.

But there on the plane, once she knew the plan was in motion, she finally let reality set in.  “Will I ever be able to walk again?”   “Will I ever be able to play with children?”   “Will I be able to pick up a child?”  “Will you have to take care of me forever?  I’m so sorry.”

Emily had vowed from the first day of diagnosis to do whatever it took to survive.   The success of the upcoming surgery in preventing cancer recurrence was anything but guaranteed, but it provided an opportunity for life, and with that, EmBen was committed.  It was the emotional commitment to mutilate her body and forever change the way she lived her life that gave her greater pause.  In that, she finally found fear.   I wanted to relieve all of her doubt, but I too didn’t know what to truly expect.  So, I just held her.

By the time we started our descent, EmBen had regained her buoyancy and was prepared for the “new normal,” a life that was perhaps missing past action and movement, but replaced with more appreciation and love.

The months of recovery, as documented on this blog, were incredibly challenging, filled with pain and fatigue.  Slowly, she adjusted.  Yesterday, though, was a significant day.

After I returned home from work, EmBen was recounting how she had exercised for 45 minutes, then went to the grocery store, then the post office, and finally Target before returning home.  As she lay there motionless on the couch, preparing for a nap, she looked at me and said, “Miles, I feel normal.”

Christmas CardSure, in reality, it may be a new normal.  But those words hit me deep.  I’m just so happy for that fearful EmBen on the plane nearly two years ago.  I just want to go hold her once again and tell her to have no fear.  She is embarking on the greatest decision of her life.

Thank all of you for your support and love in 2014.  EmBen and I are so grateful and excited for 2015.    May we all celebrate this year.

Much love.  Live in the Moment.

Miles & EmBen