Journal entry:
Day 38: Eve of Port Placement
We travel to Portland for Owen's Port Placement, and we explain why he requires more treatment despite remission.
Today, we prepared for an early departure to Portland, setting out to stay in a hotel as we anticipate Owen's surgical appointment at 7:30 am tomorrow for his Port Placement. Amid the bustle of packing, Owen's mood swung towards the grumpy side—a typical toddler response, we assume, rather than anything linked to his condition. Whenever we inquire about pain, his emphatic "NOOO!" makes it clear he's had his fill of our parental probing.
Owen has no treatments or medications today, as we're paused before the next phase of his treatment begins. Next week marks the start of a new regimen of oral medications for his Consolidation phase, aimed at preventing his Leukemia from making a comeback.
Fortunately, Owen's condition remains stable without any new setbacks. He's bounced back to his usual self following the Dexamethasone taken during his induction phase. It's heartening to see him more active, engaging in walking and playing without any prompting. However, the exhaustion set in by early afternoon, leading Owen to use his "whiney voice" as a strategy to be carried around the house, a small concession we're all too happy to grant.
In the early morning, Owen found comfort and entertainment with his mom, watching his favorite shows and playing with his toys. Meanwhile, Dad was engrossed in tying up some loose ends with client work, needing to finish by 3 pm to set off for Portland. Amidst this, Melissa skillfully packed necessities and fitted Owen's new booster seat—a timely update prompted by his recent growth spurt from the steroids, now tipping him over 40lbs and into the height requirement for a booster. This change, small but significant, promised more comfort for Owen during our long drives to Portland.
By 4 pm, with Dad's work done, we embarked on our journey, sweetened by a treat from Dutch Bro's for the road. The drive was smooth and traffic-free, leading us to our familiar hotel in Portland. Owen's excitement to return to a setting reminiscent of our extended stay during his Induction period was palpable and comforting.
That evening, we engaged Owen in a heartfelt discussion about the upcoming procedure. He was attentive and inquisitive and even pointed out where the new port would be. The assurance that he would be asleep during the procedure eased his mind, allowing him to sleep peacefully.
However, the night was far less kind to us, with anxiety weaving through our thoughts, leaving us tossing and turning. The weight of the unknown, the details, and the risks associated with the procedure hung heavily, painting our night with restlessness.
Since sharing the news of Owen's "technical" remission, we've encountered a mix of curiosity and confusion from those unaware of the complexities behind his ongoing treatment, especially with the upcoming surgical Port Placement. It's been a journey of explaining to friends and families—some with puzzled looks—why, despite this remission, Owen faces another one to two years of treatment, including the need for a port placement now.
The concept of induction therapy leading to remission, yet not signifying a complete cure, often requires clarification. We've learned to outline the critical reasons why treatment extends well beyond reaching remission:
- Microscopic Disease: Remission might hide tiny, undetectable leukemia cells within the body, which, if left unchecked, can cause a relapse. These lingering cells necessitate continued treatment.
- Sanctuary Sites: Some body areas, like the brain and spinal fluid, are more complex for chemotherapy to reach. Leukemia cells can take refuge in these "sanctuary sites," posing a risk of relapse. Ongoing treatment aims to eradicate cells from these hidden nooks.
- Preventing Resistance: Constant treatment helps thwart the leukemia cells' potential resistance to chemotherapy. Without continuous treatment, these cells could mutate, becoming impervious to the once-effective drugs.
- Consolidation and Maintenance Therapy: Following the initial remission, consolidation therapy reduces leukemia cell numbers further, succeeded by maintenance therapy to sustain remission. This stage is vital for a lasting cure.
- Immature Immune System: Owen's young, developing immune system isn't as equipped to fight off the residual cancer cells as an adult's. The prolonged treatment period is designed to bolster his body's ability to eliminate Leukemia completely.
Explaining these aspects helps us understand that continued treatment post-remission is not just necessary but critical in curing Owen. This journey is about ensuring a thorough victory over the disease, armed with patience, knowledge, and hope.
We sincerely appreciate our community's outpouring of support and solidarity during this challenging time. If you wish to extend support, feel free to share your thoughts in the comments, spread the word about our journey across your preferred social media platforms, or consider donating to our GoFundMe page. Every gesture, big or small, fortifies our resolve and aids in our battle.
As we look towards tomorrow, our hearts are buoyed by hope yet heavy with anticipation. Our singular wish is for Owen's port placement surgery to proceed without a hitch, devoid of any complications. Following the uplifting news of his remission, our path forward must remain steady, without unforeseen obstacles that could undermine our hard-won progress.
Owen's Treatment Calendar
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