I’ve gone back and forth on sharing our story for months now and that's not an exaggerated statement. My hope and goal in sharing isn't for acknowledgment or pity, but instead, as a way to honor and celebrate all that we've been through and overcome. I'm writing this to share our story so I can walk with confidence into the next chapter of our lives. We've had a helluva year, but now that we’ve gotten through the storm, I've decided I’m ready to share everything we’ve been through. Starting from the beginning…
After years of trying to conceive a second child, we were ecstatic (but also cautiously optimistic) to find out we were pregnant last August. My struggles with secondary infertility and having multiple miscarriages really shook me to my core... It was just so unexpected. We conceived Emma without actually "trying" and I had a healthy, non-eventful pregnancy. I've always wanted multiple children and had envisioned that they'd be close in age, just as my brother and I are. However, due to Jared's deployment schedule, our difficulty trying to conceive, and having multiple miscarriages it felt almost impossible that we'd ever get pregnant with another child. So when I hit the 13-week mark in mid-October, we felt such a sigh of relief because we had made it further than our previous 2 pregnancies. Finally, it felt like our prayers were answered - our miracle baby was due in April 2021.
Unfortunately, this period of calm was short-lived. The night before we were set to leave for Virginia to "house hunt" for our upcoming PCS I suddenly began to experience severe pain in my neck and back. We're talking excruciating pain... I could barely walk without feeling so sick to my stomach from the pain and discomfort. I tried everything to remedy the pain - physical therapy, massages, visiting a chiropractor, stretching, pregnancy-safe medications, and acupuncture but nothing worked and I was absolutely miserable. The pain made it impossible to sleep, I lost my appetite and started having other troublesome symptoms. The only positive was that during this time Jared was on his "house hunting" leave so he was home able to help and entertain Emma.
Fast forward to Jared's first day back to work after his house hunting leave ended and my first day alone with Emma... the pain still hadn't subsided. I jokingly thought, maybe I need to go for a run or something to loosen up whatever's going on! Phew, I'm glad I didn't attempt that! Around mid-day, I started to feel extremely dizzy and light-headed. I called my Dad (whom my family lovingly refers to as Doctor Dad) and he suggested I try eating and drink a big ol' glass of water, if that didn't help within an hour I should probably head to the ER. Sure enough, it did nothing. I tried texting and calling Jared, but because he works on a big metal ship, he rarely has cell service. After several attempts, I finally decided to call the ship Ombudsmen - I explained to her that I desperately needed to get a hold of my husband. It took longer than I wanted to wait, but after about 30 minutes, Jared called. I told him I needed to go to the ER but couldn't drive myself and obviously needed him home for Emma since she wasn't allowed to go into the ER due to COVID. Two hours later we were headed for the ER at the Mayo Clinic. I thank my lucky stars that I had the good sense to go to the Mayo Clinic ER and not just an Urgent Care because I'm sure my symptoms would have easily been dismissed as pregnancy-related.
After being checked in and triaged, I shared all of my symptoms with the Doctor in the ER. Since I was pregnant he decided to do an ultrasound to check on the baby. It was then that I told him about how my the upper ride side of my stomach (just under my rib cage) had felt really hard in comparison to the rest of my abdomen. He decided to do an ultrasound of that portion of my stomach and discovered a very large mass near my liver. Initially because my hemoglobin levels were low and decreasing, they thought the tumor was actively bleeding so they rushed me in for multiple scans to try to get a clearer picture of what was going on. The scans revealed that the tumor was not bleeding, which was a relief. However, they had NO clue what to make of this large mass. I met with multiple specialists at Mayo and each one had a different suggestion for how to handle the tumor - one suggested I wait until after delivering the baby to surgically remove it. Another thought I should transfer to a different hospital for care because this particular Mayo Clinic doesn't have an OB Department. However, we opted to wait for the Liver Surgeon/Specialists opinion who happened to be off that weekend. I spent those first couple of days in the ICU being constantly monitored until I was able to meet with the Liver Surgeon. Similar to another doctor, he initially thought we should wait until the baby was bigger/closer to delivery to discuss removing the mass but the pain had only intensified and the thought of waiting months for relief literally brought me to tears. I begged for him to reconsider all of my options. After a week or so, they decided to do a biopsy of the tumor to help aid in the decision-making process of how to move forward. The biopsy determined it was worst case scenario: the 20cm tumor was cancer - specifically a rare kind of sarcoma, and I would need a complicated and risky surgery to remove it. I was terrified not only for myself but for our baby as well - what would this mean for our baby's viability? The baby we had waited years for... the baby we had prayed and hoped for... The baby I had already envisioned as part of our life... The baby that completed our family. Because the Mayo Clinic didn't have an OB department, I consulted my OB-GYN for more information and security in the decision to move forward with surgery. He was great and helped to put my mind at ease, he stated that the second trimester was the absolute best time for this type of surgery because a baby in the first trimester would be too susceptible to the drugs and stress put on my body caused by the surgery and a baby in the third trimester would be too big for this type of surgery. He also shared that babies have a 90% chance of survival during maternal surgeries, such as mine. This all helped to put my mind at ease and I mean really, what choice did I have? Without me, the baby wouldn't be able to survive AND I have a family to consider. So with that, we moved forward with scheduling the surgery, which happened within a matter of days once the biopsy results were in.
After a 6-hour surgery, both baby and I pulled through and the doctors were confident that they were able to remove every last bit of the tumor with clean margins, which was the best news to hear post-surgery. My recovery was loooong and painful but I was thankful because I was alive and so was our miracle baby. Despite having clean margins and removing the entire tumor, I was told cancer could still exist in my cells, and therefore chemotherapy would be absolutely necessary. And ideally, it would take place within 3 months of surgery. Considering the baby was not due until April, the days and months ahead suddenly looked quite scary and uncertain.
A few days after being discharged from the hospital, Jared and I went to the OB to check on the baby more thoroughly and it was then that we learned our miracle baby was a girl! We were thrilled and we knew Emma would be over the moon to find out she was going to have a baby sister. Almost immediately Jared and I knew what her name would be… Riley was a top contender when we were brainstorming names for Emma and we always knew our second child (boy or girl) would have the middle name Aaron, after Jared’s late brother.
In the midst of all of this, our family was still preparing for a PCS (permanent change of stations) from Jacksonville to Virginia Beach. Jared took over handling all the details with terminating our current lease, signing paperwork for our new rental in Virginia, coordinating movers, and packing things up! Talk about stress on top of stress. We also knew that due to the nature of Jared's career, he wouldn't be able to support me in my recovery, help with Emma or attend any of the weekly doctor's appointments I'd have to monitor my incision and check on baby (who was now considered high-risk). While Jared handled the packing and moving to Virginia, Emma and I headed back to Michigan to be with family during my recovery and the remainder of my pregnancy. After moving back to Michigan, I met with Maternal-Fetal Medicine (which is just a fancy way of saying high-risk OB-GYN) and my Oncologist at the University of Michigan and we came up with a game plan. Initially, the plan was for me to carry Riley until approximately 28-30 weeks, at which point they would induce so that I could begin chemotherapy immediately following. However, a baby born that early is at a huuuuuuge risk and the list of complications is longer than I could regurgitate now. So we discussed another option, I would undergo chemotherapy while still pregnant. Of course, I was incredibly nervous and hesitant about this plan because there's very little data/research out there outlining the effects of chemotherapy on a baby in utero, but the little bit of data that was shared was promising, plus it allowed her more time inside the womb which is the safest place she could be. Jared and I discussed all of our options and decided that the best path forward would be to undergo chemotherapy while still pregnant, then when Riley was 36 weeks, I would deliver her via c-section and continue my treatment.
Just when we had wrapped our minds around this plan, everything changed, again. I started to experience heavier than normal bleeding and some mild contractions. I went to the hospital to have everything checked out and it was discovered that my surgery had resulted in a placenta abruption, which was causing the bleeding and initiating contractions. I was admitted to the hospital early on the morning of Saturday, January 2nd. After 24 hours of contractions, it quickly became clear that the contractions were not going to go away, but instead were becoming more intense and frequent. The OB and I discussed my options and since she was positioned breach, a c-section was the best delivery option. I called Jared immediately (he was in Virginia working) and told him that things were escalating and that he needed to get to Michigan ASAP.
Emma was born vaginally so I had no idea what to expect for a c-section... All I can say is, what an experience… the lights, the number of people in the room, the lack of modesty, it was all overwhelming and I felt nauseous a couple of times because it was just a lot to take in so suddenly. Within 15 minutes of entering the operating room, they got started. It’s weird to feel what’s going on during surgery but not experience any sensation or pain with it, just pressure and movement. I could literally feel them make the incision, but it didn’t hurt. I could feel them stretch things and pull things, but again, no pain. After a couple of minutes, I remember hearing the doctor say, ok, it’s almost time to pull her out and I held my breath in anticipation.
On January 3rd, 2021, at 11:54 am, Riley Aaron Olah was born at 24 weeks, weighing only 1lb 4oz. Riley came out screeching, taking breaths on her own and wiggling around... the doctor and nurses were amazed because a micro-preemie doesn't usually exhibit that kind of behavior when born. I thought to myself, that's my Riley girl- strong, resilient, and brave, which is what she's been since day one. They took her over to the incubator immediately to get to work, inserting a ventilator to administer medication into her lungs to help them open up and make breathing a little easier. After they got her situated and stabilized they wheeled her over to me so I could see her before they took her down to the NICU. Riley Aaron took my breath away - so little, so perfect, and just simply amazing! To see her that little but healthy and strong made my heart soar with such pride and love. From there she went down to the NICU and I went into a recovery room for the next 2 hours where I spent time well, in recovery. I called Jared to tell him everything went well and that she was absolutely perfect! After about an hour and 30 minutes, one of the NICU nurses came up to tell us Riley was doing great and that I could come down to see her - It was so surreal to see her in person - so very little yet, somehow bigger and stronger than I had anticipated her being. I spent the next 15 minutes just staring at Riley in awe while the nurse filled me in on everything that had happened in her first 2 hours of life on the outside. The nurses and doctors were blown away by how well she was doing, which was such a relief because I never wanted any of this for her, I didn’t want her to have to start her life-fighting.
My bond with Riley was different, she got me through some of the darkest and scariest times of my life. She was with me when I got the news about my cancer, she was with me during my very long and intensive abdominal surgery. She was with me throughout my recovery. Riley's fight and will to live and thrive kept me going, it gave me purpose and a reason to stay strong when all I wanted to do was break down and cry. Riley was our miracle baby, she gave me faith when I questioned everything and strength when I needed it most.
We spent the next two weeks splitting our time between the NICU with Riley and at home with Emma. I felt guilty when I wasn't at the NICU with Riley because I wanted nothing more than to be there for her, to read and sing to her, sit with her, give her lots of "hand hugs", to feel like her Mom. Being a parent to a baby in the NICU is rough... You give birth to this perfect little baby, who is an extension of you, a part of you but yet, they're not with you. You walk in and out of the hospital empty-handed and it's rough. To yearn for your baby and to desperately want the late-night feedings, spit-up on your clothes, dirty diapers, the chaos that most parents complain about. It obviously wasn't what we experienced with Emma and it left me feeling incredibly sad, like I had this massive void. But we managed because we knew there was no better place for her but the NICU and that she needed that time there to grow and get stronger so she could eventually be sent home with us.
Two weeks after Riley was born I started chemotherapy. I was scared as hell to undergo chemotherapy and I spent my fair share of time crying for fear of the unknown. As emotional as I was about this next chapter, I was also ready for it. Ready to start the last and final step of this journey. Once my hair started to thin (which by the way, it doesn't happen the way they depict it in the movies - it doesn't come out in massive chunks, just gradually thins until you reach the point that you no longer have hair) we decided to buzz my hair because constantly "shedding" was more emotional than just moving forward with the next step. We had fun with it... I let Jared give me a mullet. We laughed, a lot, and surprisingly, I didn't cry like I thought I would. I felt so great after my first round of chemotherapy, I remember thinking to myself - you've got this girl, one down, five more to go and by the time you get done, Riley will be joining us at home too! You've got this, you've got this, you've got this! I channeled that, I chanted that, I believed that... you've got this!
Then, as if our world hadn’t been rocked enough, 3 weeks after Riley was born she was taken from us due to an infection that her tiny little body just couldn’t fight off. I started to write more about her time in the NICU and the day we lost her, but in full transparency, I'm just not ready to go there yet. It still hurts too much... maybe I'll get there one day, maybe I won't and that's ok. What I can say is that it was completely unexpected and happened so very quickly. Losing Riley has been by far the hardest thing we’ve dealt with during this chapter of our lives and I think about her every. single. day. It’s a day I’ll never, ever forget for the rest of my life. I honestly never expected this, how could I?! Think of all that we'd already been through, endured, overcome... there was just no way my baby could be taken away. It wasn’t supposed to happen. Riley girl and I had been through so much and without her, I don’t know how I would have gotten through each day - she gave me hope, my little miracle baby. She gave me strength daily and reminded me what I was fighting so hard for. No amount of time will heal the hole in my heart. I never got to be her Mommy in the way I had prayed and hoped for, the only Mommy I can be for her now is one who honors her, remembers her, and continues to LOVE her from the earth, until we meet again.
We lost Riley in between chemotherapy treatments and I'll never forget going to my second appointment and having the Doctor ask me about her, about how she was doing... I lost it. I mean really sobbed, like full-on ugly crying with snot all over the place. It was brutal.
I was on a 21-day cycle so here's an example of what that looked like...
Week One: Chemo Week
- Day One: Bloodwork/labs, meet with my Oncologist & Chemotherapy (Day 1) - I was in the hopsital for chemo for approximately 8-10 hours each day, they were incredibly loooooooong days, and no one was allowed to accompany me due to COVID.
- Day Two: Bloodwork/labs and then I'd begin Chemotherapy Day 2
- Day Three: Bloodwork/labs and then I'd begin Chemotherapy Day 3
- The rest of the week is when I'd feel my crappiest... mostly just nausea and fatigue. Thankfully the medications I was prescribed helped immensely which made my symptoms manageable.
Week Two: We called this my "Red Week"
- During this week I felt mostly fine, just extremely tired. It was during this point in the cycle that my levels (white blood cell count, red blood cell count, hemoglobin levels, etc.) werea at their lowest which meant my immune system was basically nothing and I was most susceptible to infection. Because of this, I never went anywhere during this week to eliminate my risk of getting sick.
Week Three: We called this my "Green Week"
- During this week I felt 100% back to normal! We'd get outside for walks, I'd do grocery pick-ups, play with Emma, hell, I even went for a few runs during this time. Then we'd start the cycle all over again.
At the recommendation of my oncologist, I did 6 rounds of chemotherapy. All in all, I'd say my experience with chemotherapy wasn’t awful and with the help of medication my nausea symptoms were mild and for the most part, my body handled it well. I did however lose ALL of hair… body hair, my head hair, eyelashes and eyebrows, everything! That rocked me to my core… you don’t realize how foundational those things are until they’re gone. I never cried about losing my hair like I thought I would but boy did I lose it when it came to losing my eyelashes and eyebrows... multiple times. You just lose all sense of feminitiy when those things are gone and I hated the way that I looked, no amount of makeup ever seemed to help. Jared was great, he always made me feel beautiful and loved despite how I felt about myself. Emma was also pretty darn cute about it, she lovingly once called my wig a mullet and that stuck! Now, we all refer to my wigs as mullets. Haha.
The emotional toll of chemotherapy and having cancer has been much harder for me to cope with. To be "sick" but not actually feel sick is so weird... In all the time leading up to my diagnosis, I never felt "sick", I never had any indications that something wasn't right. And then to deal with the loss of a child, the absolute worst experience you can go through, was more than I could ever accurately describe in a blog post. It was brutal. Everything reminded me of Riley, of the family I had envisioned and dealing with those constant triggers was exhausting. I'm thankful everyday that I had my husband with me AND Emma, my little ray of sunshine.
It still doesn't feel real and the realization that I'll deal with this the rest. of. my. life. despite being "done" with chemotherapy makes every day both challenging but also a true gift. I can't technically consider myself cancer-free yet, I won't get to use that phrase for another couple of years, but so far all of my scans post-surgery and chemo have been clear and for that, I'm so very very thankful. I'm trying, really really trying, to stay positive, choose joy and live life to the fullest doing the things that I enjoy most because time isn't guaranteed and if this past year taught me anything, it's just that.
Lastly, in the spirit of finding sunshine amidst the storm, I'm grateful that this very difficult season strengthened my relationship with my husband. Any one of our hurdles could have easily ripped our relationship to threads, but instead, it made ours stronger. I truly don't know how I would have gotten through this past year without him. Thank you Jared for loving me through the lowest of lows and continuing to love me even when I looked like a naked mole-rat. I also need to thank my friends and family. My family was beyond amazing, the love and support I received was unparalleled and I honestly think that it's because of my support system that I'm still standing. My friends... wow. I was so blown away by the generosity, support, acts of kindness, and just love that I received from all of them throughout this challenging time. It literally brought me to tears several times during this journey. For all of my friends that showed up when I needed you most, thank you, from the bottom of my heart.
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