Blog Post by Team Hallie member Kelly Causey
I did something for the first time today. I “researched” small cell neuroendocrine cervical cancer online. It took me a few tries because I still, for the life of me, can’t spell n-e-u-r-o-e-n-d-o-c-r-i-n-e right. Let alone say it. For as awful as cancer is, you think doctors/researchers would at least make it easy on us by naming it something simpler. For those trying to do quick math, it has been 807 days since I was diagnosed but yes, today was the first day I looked up my cancer online. I’ve seen & heard information obviously & I’m part of a Facebook group of sisters who have the same cancer so I’ve of course been exposed to information there but I’ve never proactively researched it. Call it fear, call it denial, call it ignorance is bliss, call it self preservation, call it numbers mean nothing in our fight, call it whatever you want, I’ve never had it in me. Kevin scoured the internet top to bottom & left to right in the days after I was diagnosed. Reading what I read this morning, I feel a physical ache for what he must have been feeling in those days.
SCCC (and LCCC) account for ~1% of cervical cancers diagnosed. To this day, there is no known precancerous state to catch this beast. There are often times no symptoms & that coupled with the aggressive nature of the cancer, women are frequently diagnosed at an advanced stage initially. Survival rates? First word that comes to mind is chilling. Second is sobering when reading these studies and articles.
I didn’t have one symptom, not a single inkling that I had cancer growing in my body. I look at pictures from the time leading up to all of this – we spent a week in Mexico, we celebrated my 30th birthday at the Sox game, we toasted our best friends at their wedding in Florida – so many pictures from all of these fun life events that are filled with so many smiles and yet all I can see now is myself in those pictures and wonder how big those cancer cells were at that moment. I’m about as curious as they come by nature and I would love to know the exact moment my cells started to revolt against me. We found out we were pregnant in mid July and we went to the doctor first at 10 weeks and again at 12 weeks. I had physical exams, ultrasounds, the whole workup & yet there was no evidence of anything suspicious. Looking at just these facts alone, it is beyond me that just four weeks later from that day, we were talking life & death. Just four weeks, a tumor was visible. Four weeks!
What first tipped us off was an abnormal PAP after my first OB appointment. I had a PAP every year leading up to this and every year, they were clear. I got a call a couple weeks later saying that some cells appeared to be abnormal but I was reassured several times not to worry because it was likely pregnancy related. I talked to two of my good friends who had gotten false positive results like this. I knew deep down something was wrong but my gift in life of being able to bury realities with a big smile & a joke sure made it easy to ignore that voice in my heart. Just to be sure though, my OB had us wait until after the first trimester to come in for a colposcopy to double check that everything was fine.
That colposcopy happened on a Friday and that following Monday I was seeing a gynecological oncologist first thing in the morning. Even then, we had no idea cancer was a possibility. Within two weeks we lost our Hallie, I had major life saving surgery & within six weeks of that I started chemo and radiation simultaneously. That’s my (shortened) story with #sccc.
January is cervical cancer awareness month. In between the lines of all the sad and scary of our story, you’ll find me, the world’s most awkward girl. I’ve never been good at talking about anything when it comes to being a girl, I was clearly made for basketball courts & jump shots over fashion & makeup. You can imagine how humbling a cervical cancer diagnosis was for a girl like me because well, you can imagine what every visit, treatment, exam, test, conversation and question is about. I’ve asked my nurses several times why this couldn’t have been skin cancer, as Kevin would always be shaking his head at me for making a joke like that. Fair question though, right?! All this to say, had it never been for Hallie, there’s a very small chance that I’m here today because of that impossible-to-spell type of cancer I had.
No two stories of cancer are the same and no two cases of cancer are the same. While I pray that cancer is something you never have to deal with, the reality is you may. The worst thing that ever happened to me pre-cancer was broken bones. Something like this can never happen to you, until it does. My hope in sharing my story today is two fold. One, it did happen to me, to us, and it’s forever a part of us. We’d give anything, anything, to change that, to have our Hallie and a sense of peace with my health forever restored but we can’t and we won’t in this lifetime. We won’t get the why we like with all we’ve lost but we can find God’s purpose in our story by sharing and connecting, because everyone has a story. Two, I share because if this awkward girl can survive all of this, you can too. Take care of yourself and don’t skip your appointments. If you haven’t been to the doctor in a while, schedule an appointment today! I’m not just talking for a PAP, I mean see your regular doctor too! Sure your insurance just reset but hey, a $15 copay for the opportunity to hear “all clear” is beyond worth it. I’d give anything to mightily celebrate something seemingly so simple! And in the 1% chance something isn’t all clear, like it was for me, life and death with cancer is often determined by how early it’s found so give yourself a fighting chance.
We had it all. We were happily pregnant with Hallie, we had just bought an amazing home to raise her in (#burblife), we had big plans for us all. This was the last picture I could find of the three of us in that ‘normal life.’ I remember being so annoyed at how hot it was that day since it was fall. You’re supposed to flannel & vest while picking apples! Real life problems, right? 😂
And then, two years ago today, in the time it took a doctor to say, “you have cancer, you’ll lose your baby and you’ll never again have biological children,” we lost everything about that normal life. I’m still traumatized by how the doctor handled it. Let me be the first to tell you that PTSD is a very real thing!
3 days later, I was officially diagnosed. The type of cancer I had confirmed that the worst case scenario that was so flippantly laid out for us, was now instantly our reality.
Today is marked with so much emotion. Haunting memories of that appointment and the phone calls to our families & closest friends. The numbness. The shock. The tears and the hugs. The Christmas music, oddly. I turned to it instantly the minute we left the hospital because who could tell me no?! This day sparks a long few weeks of anniversaries that don’t get any easier, including the day we lost Hallie. Being diagnosed with cancer is a long process. Fighting cancer is a long process. Losing your sense of normalcy and your sense of security is a long process. Losing your child is an even longer process. Grieving your child and what your life should’ve been is a long process. Adoption is a long process. Seemingly everything in our life still, two years removed, is a long process.
We continue to trust that God is hard at work on His master plan to weave all of this perfectly together. That all of these hardships will one day unfold into great joy. We have had moments of hope and we hold onto those tight. We are working really hard to honor Hallie through the Foundation, as it’s all we have of her, for now. We also eagerly wait to make Hallie a big sister through the miracle of adoption.
But for today, I really, really hate cancer & I really, really hate this day. And you better believe I am listening to Christmas music today. 🧡
Processing, they say, leads to healing. I say that whoever said time heals all wounds should spend a day in this body of mine. Dealers choice on whether it’s physically, mentally, emotionally or spiritually.
I’ve written many blog posts over the past couple of months, none of which seem worth sharing. I find it harder and harder to articulate meaningfully what my post-cancer-grieving-mom life really looks & feels like. It sure ain’t pretty at times and sadly, it isn’t fixed by slapping a quick joke or big smile on it, my signature go-to. I’ve tried to keep that rusty lining mentality through it all though. It’s messy because you’re processing. Processing is progress. And that progress will one day turn into healing.
I have my 18-month-post-treatment appointment next Tuesday. That means I’m 22-months-post-surgery, the last day I had cancer in my body. I’m still not sure what the correct anniversary is to celebrate. I don’t have scans scheduled for this appointment, those are every 6 months now (next up in December), this is the physical exam and PAP. I, of course, find myself overanalyzing every ache and pain right now. Each and every one is obviously cancer, right?! ‘What if’ is a dangerous game to play, I know that, but there’s also no escaping the thoughts filtered through that lense. There are moments of anger, there are moments of gratitude and there are a million moments of every other emotion that exists on the spectrum between those two. Keep us in your prayers!
Boy does 22 months ago feel like it was yesterday and a million years ago all at the same time. I made it out in my mind that the second year of anniversaries would be easier, wouldn’t be as emotional. I’m finding instead that it is an entirely different experience, thanks to that whole, “processing,” thing. Last year, I wanted to fast forward through it all. This year, I find myself not even being able to think to October, when I was diagnosed. Or November. November 3rd specifically. That day haunts me right now. How do we navigate a day that cruelly stole our first and only biological daughter, but granted me a miraculous second chance at life? I don’t play the stats game with cancer, you can’t, you simply can’t, but I was scrolling through Facebook the other day (dangerous) and saw a post from a woman who had my cancer and was celebrating five years cancer free (amazing!). She said our cancer had a 15% (15%!) survival rate at the two year mark. I’m sure I knew a version of this along the way, I do recall that my doctor said early on that two years would be a significant milestone. Clearly I never grasped that, although I’m starting to now. I felt that most at my sister’s wedding recently. I had a very specific moment where the emotions hit me really hard, as if I finally realized how much of a miracle it was that I was even there. The idea that I could’ve missed out on being my sister’s matron of honor struck me to my core. It was a moment marked by the deepest sense of gratitude I can remember feeling since 10/20/16, paired also though with the deepest ache. Hallie is my greatest miracle and my greatest heartbreak, all in one.
I saw this posted the other day and as I read each need, I found myself silently screaming, ‘retweet’ to each one. Simple yet profound, my head & heart at this point in time, perfectly captured. In reading it, consider this your invitation ‘in’ as we tackle this incredibly difficult (and long) stretch of appointments, anniversaries and holidays …again. And thank you for your continued role in keeping Hallie alive for us.
Here’s to a clean bill of health on Tuesday. Thanks again for your prayers!
I would be lying if I didn’t say this is one of the hardest days of the year. This day growing up was always so special because I was so fortunate to grow up with an awesome father to celebrate and I genuinely want to wish him and all the great Dad’s out there a Happy Father’s Day! For me, this Father’s Day makes me so aware that the word Dad, the meaning of a father, what being a father is, is something I see so differently now, after everything we’ve been through.
There are Dad’s of all kinds – biological dad’s, step dad’s, adoptive dad’s, foster dad’s, and father figures. I knew some versions of these through different friendships and family relationships growing up. What I never knew about though are the Dad’s that no one talks about much, because it’s uncomfortable for ‘outsiders.’ The Dad’s that have lost their children or the Dad’s that can never have their own biological children. The Dad I am this year. It’s still surreal that this is our story, but now that I am one, I realize how much these Dad’s need to know how much they are absolutely are just that, Dad’s, like all of the other versions I’ve met along the way.
I never got to hold our sweet Hallie girl, which continues to be so difficult to deal with. What’s funny though, is how much I’ve learned that life is about perspective. I consider us lucky that we got her foot prints, handprints, and ultrasound pictures. We have a piece of her here on earth and they mean everything to me. I had her foot prints tattooed on the inside of my left arm to have her with me every minute of every day. They make me feel like she’s close to me. Those of you who know me well know that I would have thoroughly enjoyed putting the fear of God into her boyfriend or prom date when she was older. I would kill for those years hearing her say “Daaaaadddd,” followed by, “He doesn’t mean that,” even though I secretly did. I never stopped picturing the song, “Cleaning this Gun,” by Rodney Atkins when we found out we were pregnant.
Our best friends recently lost their baby boy Maddox. It’s so sad, I can’t even put it into words. I could’ve never imagined when we met in college that one day we’d share a hug over a new bond, a bond nobody wants, a bond nobody should ever share – a hug over our lost children. We sat for hours, in a haze, and yet it was what all four of us needed. It almost gave a purpose to our loss of Hallie because it gave us the ability to simply sit with them and to know the deep ache they were feeling without needing to say one word about it.
I know that there are so many other Dad’s, like us, out there today that feel the hurt over the child/children they have lost, the ones that they never got to hold, the ones that never got to hear a heartbeat for or see an ultrasound picture of. The ones that never got to hear their kids first word, throw their first pitch, watch them shoot a basketball for the first time. Yes I am very sports oriented, as Bethany and I were both pretty good athletes, best in our families, actually (just ask them!). I would’ve given anything to coach Hallie.
I could get lost in the ‘what could’ve been’ forever. Hallie, as your Dad, I couldn’t be more proud of you. I am so sorry I couldn’t protect you and save you. I know you are with me everyday and I love you darlin. This has been the hardest road we’ve ever had to travel without a doubt but we will make it through, for you.
And for all the Dad’s out there that are also just, “making it through,” today, I am here. You are not alone! You are a Dad and your kid is looking down on you today, smiling.
We are happy to report that my scans came back, “perfect,” today! We sure love hearing those words from Dr. Potkul. For those counting, this marks 19 months since I’ve had cancer in my body & 15 months since I completed treatment. Here’s to 19 million more months of perfect scans.
The lead up to scans is always quite daunting, so a big thanks for all your prayers. Let me tell you, there’s no bigger sigh of relief known to man than when a cancer survivor hears, “all clear.” It is not lost on us that nothing is a given with cancer, no matter how much time has passed. We are always, always very aware of the many routes this day could’ve gone, so we are deeply grateful for the continued clean bill of health.
What was most exciting (and distracting!) for us this scan week was our ability to spread Hallie’s Hope during our time at the hospital. Thanks to so many generous sock donations, we were able to drop off 12 care packages to the children’s oncology unit & 20 to the regular chemo unit where I received treatment. The kid socks were amazing- most of them were super hero themed – could that be any more appropriate for these tiny humans conquering this brutal disease?! Cancer really is the worst but we couldn’t be prouder to do this in honor of Hallie. Doing anything we can to make lemonade out of our lemons. If you haven’t followed us yet on our Foundation website/blog – check it out today: http://www.halliestrong.org.
And those shirts! These came today and they are going to be available for purchase soon through the Foundation, as a fundraiser for the care packages! This all makes us so happy. Considering, of course.
Keep praying for us as we continue to tackle this post cancer life & as we continue to (sort of) patiently wait to be matched in the adoption process. For today, thank you, thank you, thank you for getting us through another round of scans.
All our love,
Beef & Kevin
Nothing about this post is my actual Mother’s Day dream, it is instead our version of making lemonade out of the lemons that life has given us.
This Mother’s Day should feature Hallie tormenting our morning, waking us up far too early, coffee galore. Instead, it features her empty room and our empty arms. Kevin asked me today how I was feeling leading up to Sunday and while I feel a million things, all I could muster was simply, “I’m just sad.”
And I am sad. I will be sad for the rest of my life over what our life should have been, what Hallie’s life could’ve been. We are 18 months removed from cancer, 14 months removed from treatment and it’s still impossible to come to grips with our reality. We are working hard at that, though. We vowed to make a difference in Hallie’s name and on what would’ve been her first birthday we announced plans for The HallieStrong Foundation. Since then, we’ve worked our butts off to launch it all and we couldn’t be prouder this Mother’s Day weekend to officially launch the first phase of it in our sweet Hallie’s memory.
And so, we humbly present to you today, The HallieStrong Foundation & our official website: halliestrong.org. We are also on Facebook, Instagram & Twitter. While we have big plans of where we want to go with the Foundation, we launch today with our first two initiatives: Hallie’s Hope & the #HallieStrongWarriors blog.
The mission of Hallie’s Hope is to deliver acts of hope, by way of care packages featuring socks, to those battling cancer today. Why socks? Check out why on the website! Our hope is that each care package spurs some much needed encouragement & laughter amidst impossible situations. That was, after all, our saving grace.
The mission of the #HallieStrongWarriors blog is to surface the stories of those battling cancer in an effort to minimize the isolating nature of cancer, to normalize the highs and lows of the fight and most importantly, to celebrate the incredible stories of the fierce courage and strength inevitably born in such impossible circumstances. We believe that by doing so, we can create a community that is better equipped to talk about cancer and it’s overreaching impact. No #HallieStrongWarrior fights alone!
Our big ask today is to visit, follow and share our website & social media pages. Read about our mission & support us in our efforts! We are currently in the process of becoming a 501(c) tax exempt organization. We simply want to positively impact as many people as we possibly can, across every platform that means so much to us. Hallie deserves nothing but the best and we have big plans to deliver on that.
Thank you for your continued support and we wish every Mama out there a very happy Mother’s Day!
Kevin & Bethany
This is your day Hallie! A day that has our hearts in a million pieces, so much so that we don’t quite have the words to articulate it to the world. Instead of even trying, we use this day instead to announce some exciting things we have in the works to honor you, kid. You deserve the world and more and we are so proud to take these first steps in honoring your legacy.
And so, today, on your first birthday, we are excited to announce the creation of Hallie’s Hope! Our entire purpose is to honor those tiny footprints of yours that left such an enormous imprint of hope and strength on our lives, and it’s time to bring that unmatched hope and strength of yours to those who need it most.
Hallie’s Hope is designed initially to serve all the #halliestrong warriors out there battling cancer. We know firsthand the enormous battle that fighting cancer is and everybody needs (and deserves) a little hope in those dark days. We also know that the impact of cancer doesn’t magically go away with a clear scan, so we will work to bring that same strength and hope to those warriors who are learning to live as survivors. Lastly, we will honor and recognize the warriors who choose to join these cancer warriors in their journey – the close friends and family members that become care takers. Who, without pause, jump into the messy and the ugly that cancer is, to support, to aid, to do anything necessary to see their loved one through. We too know that requires enormous strength (aren’t you so proud of your Dad, Hallie?!). No one ever tells these people how much cancer will impact and change them, too, and we are going to change that!
Moments of levity are what got us through our battle so you will see a lot of that sewn into how we drive the purpose of Hallie’s Hope forward. We believe humor would’ve been one of your greatest strengths Hallie, second only to mine, right?!
What will give us the ability to act on all these initiatives and what we are ultimately so excited to also announce today is the creation of the HallieStrong Foundation. The Foundation will give us the ability to fundraise to make an even greater impact in spreading acts of Hallie’s Hope. We have visions of 5k’s, golf outings, fundraisers, etc. My biggest goal and what we are working so hard for down the road is the vision I have for a gala! Tons of people, gathered in your name, with the sole common purpose to make sure no one ever forgets your legacy. We are nearly finished with the process of becoming an official 501(c) non profit.
We clearly have so many hopes and dreams – really, you should see our business plans! Our desire is to do this right for Hallie so you’ll see this all unfold over time but we simply couldn’t pass up taking today, her birthday, to announce it all coming together. We hope it makes you proud Hallie! It’s the absolute least we could do and it brings us so much joy as your parents to serve you in such a meaningful way.
We will be launching our website & social media sites soon, we will make sure to announce everything here so you’ll be able to connect directly with it all. In the meantime, if you know a warrior (or if you are one!) that would benefit from Hallie’s Hope, email us at firstname.lastname@example.org.
You’ll also start to see updates to how we blog through the website, but have no fear, this personal blog of ours isn’t going anywhere. My hope is that because we are taking action for Hallie, I’ll find my way with words again and be able to let people in, again.
Thank you from the bottom of our hearts for hopping on this ride with us. It has made me and Kevin so happy to dive head first into it all. We have big hopes and dreams for where this can go and our daughter deserves it all. We have so many platforms because of our story and the fact that we can now go out and impact those in Hallie’s name is a opportunity that we, her parents, so desperately needed. Especially today, as we mark such a painful day. Can you imagine the party she’s having in Heaven?
As for us, we escaped to the beach this weekend to mark her birthday together in a place that we would’ve undoubtedly made a lot of family memories at. We are currently sitting under stormy skies and I can’t help but know she totally had a hand in that. Truly her Mama’s daughter. Love you forever Hallie!
Another wildly huge milestone achieved: one year post treatment, still cancer free ✔️ For the past year, I’ve celebrated these milestones with such joy & pure candor and yesterday we made a few calls, sent a few texts and were in bed by 7 with Season 6 of Parenthood. I think we can simply mark this season of life with the title of, “exhausted.”
I will share, albeit hesitantly because you know, “jinx!, but my Doctors this time around chose to forego scans and opted only for the physical exam & PAP. Because of my progress over the past year, they recommended that scans be pushed to every six months, meaning my next scan will be in June. Big deal, right?!
It’s a great milestone for us – an enormous one really. I love my doctors confidence and I’m going to ride their coattails forever on it. I’m pretty sure it’s made me “feel” things in my body at a def con 5 status over the past week and still this morning, knowing I didn’t have a scan. Is that headache a brain tumor? Is that tightness in my chest cancer spread? Or is it because I just flew to PHX and I think I got coughed on 5 times directly on the plane? 99% chance it’s the latter but rationale thinking doesn’t always work in a cancer survivors brain. I can feel myself coming to grips with being 16 months cancer free & being one year out of treatment but I can see & feel how much healing is still to be had. It has been a much bigger task that we could’ve ever imagined, tackling all the baggage that comes with cancer and in the heat of those moments, we simply say to ourselves, “progress not perfection.”
This blog has collected some cobwebs as of late as my physical desire to let people in just hasn’t been there. It’s not for lack of love for you all & it surely isn’t for lack of our need for your continued support. I just simply haven’t found myself capable of opening up. As we cross this milestone and add it to hopefully a very, very long list of similar milestones, we continue to find a way to start each morning feeling grateful that I am alive. And that I have crazy, wacky, curly hair.
We are forever grateful for the way in which you all have walked with us the past 16 months & specifically during treatment as I think back all your prayers, support & acts of kindness. It inspired me every step of the way.
We ask that you continue to keep us in your prayers!
All our love, Beef & Kevin
The power of perspective. You may see this picture and think, “ugh, chemo, the worst!” And well, you’re right, but I see this picture pop up on my timehop and I’m like what. a. week. that was. I vividly remember how happy I was to be in that chair.
Do you guys remember this week, last year?! The lead up to that picture?! The three day stay in the hospital, quarantined from germs that could’ve killed me, all while Paisley took on a skunk and lost mightily, making our home inhabitable upon my release. Every carpet & piece of furniture had to be professionally cleaned, while every piece of clothing we owned was dipped in vinegar and also washed. I was released from the hospital, stayed in a hotel until Tuesday morning, and we drove from there to chemo.
Anytime I’m frustrated, angry or having a bad day, that’s the weekend I think of as a barometer to gauge how bad my current circumstances really are. Spoiler alert, it rarely compares! It is comical now, but what a wild ride that was. A wild, wild ride. Anyone that doesn’t believe in miracles needs to understand Paisley still being loved & cared for in our family is the greatest miracle ever recorded. 😂
But. I’ve turned the tables on what this week means for us this year. I’ve conquered some big milestones!
One, I returned back to that very chair for the first time Tuesday to get my port flushed. (For all you nurses out there, my port was flushed at my scans so I’m not that bad of a patient!!) I had neglected it for a variety of reasons, all of which fall under the PTSD umbrella towards that place, the memories, cancer, that life. I’m not saying it was rational but for once, something needed to be on my terms. Long story short (and some good advice from a close friend!), I made the appointment & conquered the PTSD on Tuesday. I got to see my chemo nurse Patty for the first time in a year! She took care of me as if I were her daughter, she fought alongside me! That hug is one I’ll never forget! Do you know that she had no idea that I had red hair, just like her?! That stopped me in my tracks. She only knew me as bald! We chatted, she had tears in her eyes. She asked me about Kevin, about adoption, about everything. She remembered every detail of my life. What a saint. My hero! I felt like I made her proud and apparently that is quite a love language of mine.
I walked out with my head held high. I felt a sense of peace. That was progress in healing.
That night, I felt led to continue to push myself. I tackled the box in the corner of my room – yes, the one filled with every card, every gift, everything we’ve been given since this all started. It has the jersey I gave Kevin to tell him we were pregnant, the elephant blanket my parents bought for Hallie the day we told them they were going to be grandparents. The Hawks bib my brother & sister in law bought for their niece at a farmers market. Every physical thing we had for Hallie. I started with the smaller cards and created a scrapbook as I never want to part ways with any card. I re-read every word of every card and while it’s infinitely difficult, I was blown away again by the incredible care people showed for us & how loved Hallie is. I only got about a fourth of the way through the box, but there was such peace in that. I don’t think that’s going to be a process I speed through with as emotional as it is but in a weird way I felt like we honored Hallie a bit that night by starting to find a home for all the physical pieces of her life that mean so much to us. She sure doesn’t belong in a box!
I like this idea of wiping out awful memories with actions that conquer the control cancer had over our lives for too long. I find a lot of hope in that as we look towards the next few months and what they mean for us now vs. what they were last year and ultimately what they should’ve been. Slowly finding my way back to being a control freak – in a way that heals!