Life has an extraordinary way of throwing curveballs, often when you least expect them. For those who have been part of the CenterCutCook family over the past year, you’re already well-acquainted with our journey through unexpected twists and turns. It feels like just yesterday, in December, when Ryan and I were celebrating the joyous news that we were expecting our first child. That profound happiness, however, was swiftly overshadowed by a shocking discovery just one week later: Ryan, at the young age of 29, was diagnosed with colon cancer. The news hit us like a tidal wave, pulling us into a world we never imagined. We were suddenly navigating the complexities of a cancer diagnosis while simultaneously preparing for the arrival of a new life. This initial challenge was monumental, forcing us to confront mortality and embrace resilience even before our son had taken his first breath. The subsequent months brought further devastating clarity when we learned that Ryan’s battle was far more severe; he had Stage 4 colon cancer, with the disease having metastasized to his lungs and lymph nodes in his abdomen. Our world, already shaken, felt like it had been turned completely upside down. Yet, amidst the fear and uncertainty, a tiny flicker of hope continued to burn brightly within us, fueled by the anticipation of our miracle boy.
Then, this past August, our beautiful little miracle, Miles, arrived. You remember meeting Miles, don’t you? He entered the world full-term, vibrant, healthy, and brimming with happiness. His birth was a beacon of light after months of darkness, a testament to enduring hope. We cherished every moment with him, finding immense joy in the simple acts of parenthood. Life, for a brief period, seemed to settle into a rhythm of new beginnings and profound love. However, just when we thought we had weathered the worst of life’s storms, another, even more terrifying one, emerged. On October 5th, as I was getting Miles ready for bed, changing his diaper, I witnessed him have a seizure. My heart instantly seized with panic. We rushed him to the emergency room, convinced he might be suffering from some form of seizure disorder. Nothing, however, could have prepared us for the profound shock and disbelief we felt when the doctors delivered the harrowing news: our precious little boy was in end-stage kidney failure. The words echoed in our ears, incomprehensible and utterly devastating, marking the beginning of yet another unexpected and challenging chapter in our family’s life.
The journey to understand Miles’s condition was agonizing and protracted. After two harrowing ambulance rides and consultations at three different hospitals, an entire week passed before we finally had a diagnosis: Primary Hyperoxaluria Type 1. This revelation brought a mix of relief and renewed despair. Relief, because we finally had a name for what was afflicting our son, but despair, because of the gravity and rarity of the condition. Primary Hyperoxaluria Type 1 is an extremely rare recessive genetic disease, which means that both Ryan and I had to be carriers of the gene for Miles to inherit it. When I emphasize its rarity, I truly mean it – in infants, this condition occurs in approximately one in five million births. This statistic alone underscores the unique and challenging path we found ourselves on. The immediate catalyst for Miles’s seizure, we learned, was an alarmingly low sodium level, a critical electrolyte that the kidneys are responsible for regulating. For those familiar with sodium ranges, Miles’s level was a dangerously low 110, a stark indicator of how compromised his kidney function had become and the immediate threat it posed to his tiny body. This diagnosis unveiled a whole new layer of complexity to our family’s health journey, far beyond anything we could have ever anticipated.
The very idea of my sweet baby boy needing a kidney transplant was an overwhelming thought in itself, a mountain of worry that felt insurmountable. So, you can only begin to imagine the profound shock and additional emotional weight that crushed us when we learned the full extent of Miles’s needs: not only does he require a kidney transplant, but he also needs a liver transplant. This was a revelation that turned our understanding of his illness on its head. We initially thought the problem stemmed solely from his kidneys, but the truth was far more complex. Miles, in fact, was born with perfectly formed, healthy little kidneys. The insidious problem all along resided with his liver, which was unable to process certain substances correctly, leading to a harmful buildup of oxalate that ultimately caused his kidneys to fail. The realization that his liver was the root cause of his kidney disease was a difficult pill to swallow, adding another layer of complexity and urgency to his medical care. It meant that a single organ transplant wouldn’t be enough; a dual organ transplant presented an even greater challenge, a longer road, and an intensified search for suitable donors for our tiny, vulnerable son. This expanded diagnosis shifted our focus from simply treating symptoms to addressing the fundamental genetic issue, reinforcing the severity and unique nature of Primary Hyperoxaluria Type 1.
Following this daunting diagnosis, we embarked on a challenging four-week stay in the hospital, a period dedicated to stabilizing Miles and initiating his dialysis treatment. It was an intense and emotionally draining time, filled with steep learning curves for us as parents. With little to no kidney function remaining, dialysis became his lifeline, literally keeping our sweet little boy alive. Witnessing him connected to machines, so small and fragile, was heartbreaking, yet we were simultaneously awestruck by the capabilities of modern medicine. The advancements in medical technology are truly amazing, offering a glimmer of hope in the darkest of times. For now, we are incredibly fortunate that I am able to administer his dialysis treatments at home each night. This means hooking him up to the machine for 10 hours while he peacefully sleeps. This nightly ritual is a testament to our dedication and the critical care he requires. It’s a demanding routine, one that shapes our evenings and nights, but it’s also a profound comfort knowing that we are actively contributing to his well-being and keeping him stable as we prepare for the next critical steps in his medical journey. The hum of the dialysis machine has become the soundtrack to our nights, a constant reminder of both his fragility and his incredible fighting spirit.
So, where do we stand now in this ongoing saga? We have been home for almost two weeks, navigating a new normal filled with complex medical care and a relentless schedule. Miles is now three months old, and our immediate, all-consuming goal is simply to get him to grow. Before he can even be considered for the life-saving liver and kidney transplants, he desperately needs to gain weight. This, however, is far easier said than done when you’re battling end-stage kidney failure, which significantly impacts appetite, nutrient absorption, and overall growth. Our home has transformed into a miniature medical unit, equipped with everything necessary for his intricate daily care. He came home with a PICC line for administering crucial medications directly into his bloodstream and an NG tube for feeding, ensuring he receives the vital nutrition necessary for growth. Between managing his nightly dialysis sessions, administering a staggering nine different medications throughout the day, diligently keeping track of his blood pressure, and weighing him twice daily to monitor his progress, our days are nothing short of hectic. Each task is performed with meticulous care, knowing that every detail contributes to his fragile stability and long-term health. It’s a demanding and exhausting routine, both physically and emotionally, yet every small gain in weight, every peaceful night of dialysis, fuels our determination. We understand that this journey towards securing a liver and kidney transplant will be a long and arduous road, stretching out over the next year, but we face it with unwavering hope. I am confident that our sweet little boy, with his incredible strength and our relentless dedication, will eventually be okay, and will thrive beyond these challenging times.
So, to recap the extraordinary and often overwhelming challenges our family has faced: yes, my beloved husband, Ryan, is battling Stage 4 colon cancer. And yes, our precious baby boy, Miles, requires a life-saving liver and kidney transplant. If you were wondering, the answer is a resounding yes, I am incredibly stressed out. The weight of these two major health crises is immense, often feeling like an unbearable burden. There are days when the exhaustion is profound, and the worry casts a long shadow over everything. Yet, despite the immense stress and the constant anxiety, we have been profoundly blessed to witness countless tender mercies along the way. Whether you call them God winks, moments of grace, or simply incredible acts of kindness, we have experienced them firsthand. From the unwavering support of our medical teams to the endless outpouring of love from family, friends, and even strangers, these blessings have been our anchor. They are powerful reminders that we are not alone in this fight and that there is an abundance of good in the world. We hold onto the steadfast belief that eventually, everything will be okay. This faith, coupled with the daily miracles we witness in Miles’s resilience and Ryan’s strength, keeps us going, instilling a deep sense of gratitude even amidst the toughest days.
If things have been a little quiet around here on the blog, and if I haven’t been able to answer your questions or engage as frequently as before, now you understand the profound reasons why. Our bandwidth for anything beyond immediate family care has been severely limited, as we pour all our energy into navigating these complex medical landscapes. We are profoundly grateful for your understanding and for the incredible patience you’ve shown. Thank you, from the bottom of our hearts, for your continued support, your kind messages, your prayers, and your unwavering encouragement as we work our way through these two immense hurdles in our lives. Knowing that we have a community standing with us makes an indescribable difference, providing strength and comfort when we need it most.
I’ve said it before, and it bears repeating, especially now: life can truly change in an instant. This journey has taught us to cherish every single moment, to hold our loved ones closer, and to find joy in the smallest victories. Laugh hard, love harder, and always, always remember to LIVE your best life, wholeheartedly and without reservation, despite any struggles, challenges, or unexpected detours that may come your way. Find your resilience, embrace your blessings, and never lose sight of the profound beauty that exists alongside life’s difficulties. This is our mantra, and we hope it can be an inspiration to you as well.
For more frequent updates on our journey, and to join a community of support and hope, I meticulously document our progress over on the Team Ryan page on Facebook. We invite you to be a part of our extended family. Join us here.
xo,
Ashley