Journal entry:
Month 6: Challenges, Triumphs, and Unexpected Blessings
We share Owen's progress through the Delay Intensification phase, our family's adaptation to home-based treatments, and the humbling experiences that have shaped our perspective.
As we mark the sixth month of Owen's leukemia treatment, we find ourselves at a crossroads of reflection, challenge, and hope. Each day brings new experiences, some difficult and others unexpectedly joyful, and we're grateful for the opportunity to share this journey with you. Your unwavering support continues to be our beacon of light through these turbulent times.
We're now a full month into Owen's Delay Intensification phase, a critical juncture in his treatment that has brought both familiar hurdles and new territories to navigate. This phase is aptly named, as it intensifies the fight against any remaining leukemia cells, delaying their potential resurgence.
One of the most significant challenges this month has been Owen's return to Dexamethasone. Those of you who've been following our journey might remember the dramatic effects this steroid had during the induction phase. True to form, Dexamethasone has once again brought its entourage of side effects - weight gain, bloating, and what we've come to call "sour attitude syndrome."
However, there's a silver lining this time around. The current regimen alternates between a week on Dexamethasone and a week off, which has made the side effects somewhat more manageable. It's a small mercy, but one we're deeply thankful for. Watching Owen's body and mood transform during the 'on' weeks, then slowly return to normal during the 'off' weeks, is like witnessing a tide ebb and flow. It's a stark reminder of the powerful medicines coursing through our little boy's body.
The past two weeks have introduced a new player to Owen's treatment lineup: cytarabine. This powerful chemotherapy drug has brought with it a new routine of hospital visits and home care that has tested our adaptability as a family.
For those curious about the science behind Owen's treatment (and we know many of you are), here's a bit about cytarabine:
Cytarabine, also known as cytosine arabinoside or Ara-C, is a crucial weapon in the fight against B-cell acute lymphoblastic leukemia (B-ALL). It works by interfering with DNA synthesis, effectively putting a wrench in the machinery that cancer cells need to replicate. What makes it particularly effective is its ability to target rapidly dividing cells - like leukemia cells - more than normal cells. It's also able to cross the blood-brain barrier, helping to prevent or treat any central nervous system involvement.
The cytarabine treatment has established a new rhythm to our weeks. Every two weeks, we make the journey to Doernbecher's for Owen to get accessed - a process where a needle is inserted into his port to allow for medication administration. Then comes the truly novel part: Owen comes home still accessed, with the port needle in place for four days.
This four-day course is carefully designed to maximize the drug's effectiveness while balancing the need to minimize toxicity. It ensures that the medication levels remain consistent, increasing the chances of targeting those sneaky leukemia cells as they enter vulnerable phases of their life cycle.
For us as parents, this has meant stepping into new roles as at-home nurses. Administering medication ourselves was initially a daunting prospect. The weight of responsibility - knowing that this crucial medication needs to be given correctly and on time - felt heavy on our shoulders. But as with so many aspects of this journey, we've found strength and capability we didn't know we possessed.
Perhaps the most nerve-wracking part was learning to deaccess Owen's port ourselves. The idea of removing a 1-inch needle from our son's chest was, frankly, terrifying. But after taking turns and supporting each other through the process, we've found that it's manageable. It's amazing how quickly the extraordinary can become ordinary when it's for the sake of your child.
This at-home treatment serves as a preview of what's to come. Soon, Owen will be port accessed at home for 28 days straight, with a slow-drip chemo backpack. It's a daunting prospect, but one that comes with a silver lining: this approach will increase Owen's chances of relapse reduction by an additional 2-5%. In the world of cancer treatment, every percentage point counts, and we're grateful for this opportunity to tip the scales further in Owen's favor.
This next phase will bring nurses to our home once a week to change Owen's dressing, sparing us the frequent drives to and from Portland. It's a small comfort, but one we appreciate deeply. Every minute saved on travel is a minute we can spend together as a family, focusing on Owen's comfort and our collective well-being.
Throughout all of these changes and challenges, Owen's spirit remains our guiding light. His ability to adapt to new routines - from Mom giving medication to having an accessed port for days on end - continues to amaze and inspire us. There's a special kind of strength in children that allows them to face extraordinary circumstances with ordinary grace, and Owen embodies this every day.
His resilience in the face of such intense treatment is a constant reminder of why we push through the hard days. When we see him smile, play, or simply rest peacefully despite everything his body is going through, it renews our determination to see this journey through to its end.
Amidst the medical routines and daily challenges, we were blessed with an extraordinary experience this month. A few months ago, we were approached by members of Fore For Four, a cancer fundraiser here in Eugene-Springfield, OR. They hold an annual golf tournament where all proceeds, along with money earned through a raffle and auction, go to a fund for four cancer fighters. Owen was chosen to be one of these recipients.
Attending the tournament was an eye-opening and deeply humbling experience. We met the other three recipients, individuals who are literally fighting for their lives against rare forms of cancer with no clear path to recovery. It was a stark reminder of the spectrum of experiences within the cancer community.
As parents of a child with cancer, it's natural to feel that our situation is uniquely devastating. And it is, in its own way. But meeting these individuals, whose lives hang so precariously in the balance, gave us a new perspective. We were acutely aware of Owen's relative fortune - his good chances of survival and his blissful unawareness of the gravity of his situation.
This is not to diminish our own struggles or Owen's fight. Every cancer journey is valid and challenging in its own right. But it was a powerful reminder of the strength of the human spirit and the diverse faces of this disease.
The generosity shown at this event left us speechless. When all was said and done, we received $20,000 in donations. The timing of this gift couldn't have been more perfect, as our family faces new financial challenges.
Melissa has made the choice to leave her job due to significant changes in her role and work environment. After three years with the company and consistently glowing reviews, the shift in her position from accounting assistant to taking on training responsibilities and the work of several other accountants who had left was becoming untenable — especially with Owen's situation.
The company's decision to freeze raises and bring in remote contractors from Atlanta only added to the stress. When Melissa finally gave her two weeks' notice, the company initially asked her to stay but ultimately agreed to let her go after she explained her concerns about company culture, constantly changing SOPs, and lack of raises despite changes in her responsibilities and massive inflation over the last two years.
This transition brings its own set of stresses, but we're choosing to view it as an opportunity. Melissa will use this time to decompress from the work-related stress and begin looking for a position that better aligns with our family's current needs. If anyone in our network knows of opportunities in accounting, banking, or reception, we'd be incredibly grateful for any leads. Melissa has an associate's degree and a wealth of experience, and we're hopeful that the right opportunity will present itself.
As we close this update, we're overwhelmed with gratitude. For the medical teams that guide Owen's treatment with such expertise and care. For the organizers and participants of the Fore For Four fundraiser who have eased our financial burden. For our employers, past and present, who have shown understanding during this challenging time.
But most of all, for you - our friends, family, and supporters. Your love, encouragement, and practical help have been invaluable in getting us through each day. The meals you've prepared, the encouraging messages you've sent, the shoulders you've offered to cry on - each gesture, no matter how small it might seem to you, has been a crucial thread in the safety net that catches us on the hardest days.
We couldn't do this without you. Your support means more than words can express, but we hope that by sharing these updates, we can give you a glimpse into the impact you're having on our lives and on Owen's journey.
Thank you for being part of our story, for your unwavering support, and for keeping Owen in your thoughts and prayers. We're stronger together, and with your continued support, we know we can face whatever comes next on this journey.
With love, gratitude, and hope,
— Owen's Parents
Owen's Treatment Calendar
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