Journal entry:
Day 39: Hope for Successful Port Surgery
Today, we were clinging to the hope for a seamless port placement surgery for Owen without a single hitch.
Today, we were clinging to the hope for a seamless port placement surgery for Owen without a single hitch. The thought of facing any setback after receiving such uplifting news about his technical remission would feel like a cruel twist of fate, one we're desperate to avoid.
Owen's nerves were frayed today, the anticipation of a hospital visit weaving a thread of unease through his young mind. This anxiety manifested as a short fuse and an acute sensitivity to his surroundings.
He picks up on the moment's gravity through whispered adult conversations and their worried glances, not through the loudness of tears or tantrums but through a silent, watchful presence. Owen stands as a quiet sentinel, his observations a form of armor, as he braces himself in the only way he can for the forthcoming ordeal.
Owen's PICC line, a long, slender tube introduced into a vein in the arm and extended towards the heart, serves for long-term intravenous treatments and blood draws. Visible and external, it's a temporary fixture lasting from weeks to months. In contrast, this Port-a-Cath he will receive, situated beneath the skin in the chest, offers a less invasive, more durable solution. A silicone septum and connecting catheter facilitate repeated venous access for Owen's chemotherapy without multiple needle punctures, designed for years of service.
Owen's apprehension was palpable even before the surgery, as donning the hospital gown brought back memories of prolonged stays, a notion he dreaded. He was given a built-in dinosaur toy, which he loved. Using screws and snapping pieces of dinosaurs together, he made a Velociraptor. It, along with Mom and Dad, became comfortable between the labs and vitals and the plethora of doctors who came to the foot of his bed to ask the same questions they always ask.
The surgical team kept us anchored in a sea of nerves throughout the surgery by sending timely text updates. Their messages, a reassurance, informed us of the perfect moment to return to the waiting area.
Remarkably, the procedure was completed in just 90 minutes. Afterward, the surgeon invited us into a private sanctuary of conversation to share the heartening news: the surgery was a success, free of complications.
Mom was the first to see Owen as he emerged from the fog of anesthesia. Dad's turn came about an hour later once Owen settled back on the pre-op/post-op floor. It was there we learned of his slightly low oxygen levels—a temporary aftermath of the anesthesia, we were assured.
Despite the assurances that everything went great, it took every ounce of our strength to set aside our fears and discomfort upon seeing our little guy. Owen eventually became laser-focused back on his Dinosaur toy. He spent the time regaining his oxygen levels, unscrewing the dinosaur he had built, and then putting it back together again.
Our priority became bolstering his spirits, encouraging him to hydrate, celebrating each small victory, and seeking those precious moments of laughter or offering him our undivided attention. As parents, we need cheerleaders who affirm our actions, guide us gently when required, and remind us that we're on the right path.
Fortunately, the nursing team has been a beacon of support. While they may not directly critique our approach, their presence offers encouragement. They stand as unwavering pillars of support for Owen, subtly reinforcing our efforts and cheering him on alongside us. This shared circle of care and encouragement has become our family's backbone, providing medical support and emotional sustenance.
Among them, Heather stands out—a beacon of warmth and understanding. As a mother of two young children, Heather has an innate ability to connect with Owen on a profoundly comforting level. Her thoughtful selection of toys and carefully chosen words have provided solace for Owen, ensuring that he finds moments of joy and comfort amidst the sterile hospital environment. Her empathy and kindness are professional courtesy and a heartfelt effort to ease the burdens of those in her care.
To get discharged, Dad worked with him to elevate him, give him timely apple juice drinks, get him to cough, and clear the phlegm from his lungs. We then managed to get him dressed and ready for a short walk to get his blood moving and to increase oxygen levels in his hair. It worked, and he was discharged, and we were allowed to return home.
We left with the comforting knowledge that the stitches would dissolve on their own, and the bandages, merely temporary guardians of his new port, could be removed by Monday. This timing couldn't be more fitting, as all future chemotherapy sessions are scheduled in Portland on Mondays. This seamless alignment felt like a small, yet profoundly comforting, piece of the puzzle falling into place as we navigate this journey.
But by the time we got on the road, it was nearly 4pm, and we were hungry as Mom and Dad hadn't eaten since 9:30am, and Owen had not since the night before. But then, finally, we were on our way home. Owen curiously started to feel the bandages on his neck and chest, and there was a short discussion about the bumps before he finally slept in the car. Upon returning home, we were all tired. Owen especially. His medication had also worn off, and he was feeling the pain associated with the Port Placement—a direct result of the incision and the creation of a subdermal pocket for the port. We alleviated his discomfort with over-the-counter pain relief, confident that the intensity of his pain would subside in the coming days.
He ate some of his favorite Ramen noodles. Finally, he went to bed, as did his emotionally and physically tired parents.
With Owen asleep, a new stress enters our minds. Our family is currently navigating a challenging financial landscape. The latest phase of treatment and accompanying care costs have stretched our budget to an additional $1,083 each month. This equates to an extra $250 weekly or a daunting $13,000 annually, not including what was already donated to cover our stay and expenses in Portland for three weeks. With each penny now accounted for, this year will be stringent financial management.
These expenses are primarily driven by the need to travel to Portland for Owen's chemotherapy appointments—covering gas, meals, and occasional overnight stays for those early Monday appointments. There are also trips to Riverbend for his regular lab work. With Melissa temporarily out of the workforce, awaiting her state-issued 12 weeks of supplemental income, our initial relief from donations is quickly depleting.
Dad's business income, while a significant help, brings in around $3,800 in a good month before taxes. This amount is just enough to cover our essential monthly outlays—rent, car payments, and the like—but doesn't stretch to cover the additional costs of Owen's treatment, especially when considering the impact of self-employment taxes.
We've recalibrated our GoFundMe goal to reflect these increased financial demands for the rest of the year. This adjustment is a testament to our determination to navigate these financial hurdles and ensure that Owen receives the care he needs without compromise.
As a family, we're navigating these turbulent waters as best we can, though it's an uphill battle every step. Witnessing our toddler endure what's termed a "routine" surgery for cancer treatment port placement tugs at our heartstrings in ways unimaginable. Owen's anxiety mirrors our own, creating a cycle of shared unease that we strive to break.
For those looking to stand with us and Owen during this journey, your words of encouragement mean the world to us. Leaving comments on this journal with supportive messages helps more than you might realize, lifting our spirits and bolstering Owen's courage. Sharing our story far and wide raises awareness and amplifies our call for support, touching the hearts of many who wish to help.
For those who can, contributing to our financial efforts can ease our burden. As we look ahead, uncertain of what year 2 might bring, adjustments may be needed in 2025. However, regardless of size, every contribution accumulates and makes a tangible difference. So far, 84 kind souls have extended their generosity. If each of the 84 individuals were joined by others who contributed $145, we would meet our financial requirements for the year, significantly lightening our load until 2025.
We're deeply moved by the generosity already shown and wholeheartedly appreciate every gesture of support. If direct financial assistance is beyond your means now, your efforts in sharing our story with friends and family remain a powerful way to help. Informing others that donating $145 or more can help us reach our goal allows us to continue focusing on Owen's care and recovery. Your support, in any form, is invaluable to us.
Looking ahead to tomorrow, we sincerely hope that Owen finds relief from the discomfort of his recent port placement. Navigating the day with bandages wrapped around his neck and chest is no small feat, especially for someone so young. Our aim is to mitigate this annoyance, hoping that a carefully administered dose of Oxy in the morning, alongside regular Tylenol intervals, will dull the sharp edges of his pain. Our primary goal is to create a tranquil environment where his needs are met with unwavering attention and care.
With a return trip to Portland on the horizon this Monday and the likelihood that Owen's new port will be utilized for the first time, we're gearing up to guide him through what to expect. It's essential to us that he understands the upcoming procedure, not as a daunting ordeal but as an exciting step forward—the farewell to his "straw," or PICC line.
Through explanation and reassurance, we aim to transform this journey into anticipation, focusing on the positives and preparing him as best as possible for the next chapter in his treatment.
Owen's Treatment Calendar
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