Chemo day four. Immunotherapy day three. The words sound clinical, almost routine, but there is nothing routine about what Cylus is enduring. Each day arrives heavy with pain, uncertainty, and a kind of exhaustion that seeps into the bones. The immunotherapy that is meant to save his life ignites intense nerve pain that ripples through his small body, a cruel paradox where healing and suffering walk hand in hand. Even with the support of a PCA to dull the edges, the discomfort never fully fades. It lingers—constant, relentless, and devastating to witness, especially through the eyes of a mother who would trade places with her child without hesitation.
Watching Cylus fight neuroblastoma means living in a world where time is measured not in hours, but in infusions, fevers, scans, and moments of relief. The pain touches everything—from the tips of his fingers to the soles of his feet. One moment, he is a little boy celebrating a birthday, laughing, walking, playing, eating with joy. The next, treatment steals those simple freedoms away. He doesn’t understand why his body hurts so much or why the medicine that promises hope feels like punishment. He only knows the ache, the fatigue, and the deep unfairness of it all.
And yet, in the midst of this storm, Cylus continues to astonish everyone around him.
Last Friday brought a small but powerful moment of hope. An X-ray of his pelvis—far less detailed than a CT or MIBG scan—offered something we had not seen in months: stability. No signs of new tumors. No visible progression. Just the quiet, precious word “stable.” It may seem small to the outside world, but for us, it felt like air after being underwater too long. In a journey defined by uncertainty, that single moment became a lifeline.
Neuroblastoma is an unforgiving disease. It rises from immature nerve cells and strikes most often in children under five, stealing innocence with ruthless efficiency. The treatment Cylus is receiving targets cancer cells with precision, but in doing so, it also affects healthy nerve cells, triggering severe pain, high fevers, and immune reactions that push his little body to its limits. As his mother, there are moments when the helplessness is unbearable. To love your child is to want to protect them from harm—and there is no greater agony than watching harm come in the name of healing.
Still, Cylus pushes forward.
Despite everything, he shows a resilience that defies logic and age. His courage humbles doctors, nurses, and everyone lucky enough to witness it. He endures days that would break most adults, and somehow, he finds the strength to smile. He reminds us—again and again—why this fight matters. Why every tear, every sleepless night, every moment of fear is worth enduring.
There are glimmers of progress, even within the hardship. Compared to his first rounds of immunotherapy back in August, his body seems to be tolerating the treatment better this time. The pain is still real, still fierce, but there is a sense that his system is learning how to cope. His spirit, though tested daily, has not dimmed. Even in the depths of fever and exhaustion, there are moments when his eyes light up, when he reaches out to interact, when his laughter briefly cuts through the heaviness of the room. Those moments are everything.
Life during treatment is also filled with countless logistical challenges that outsiders rarely see. Plans are made and broken constantly. We hoped to return home by Tuesday, but the need for additional blood transfusions delayed us by nearly half a day. These delays may seem small, but they serve as constant reminders that nothing is predictable when your child is fighting cancer. Control becomes an illusion. Patience becomes a necessity.
Yet hope continues to find its way in. Recently, we received encouraging news that initial approval issues for potential clinical trials have been resolved. It is a crucial step forward—one that opens doors to new possibilities and better options. In a journey where the future often feels uncertain, even a small step toward progress feels monumental. It is another reminder that science is advancing, that people are fighting alongside us, and that there is reason to believe in tomorrow.
Every day with Cylus is a delicate balance. Pain management. Medical decisions. Emotional support. Each infusion carries risk and promise. Each fever spike sends hearts racing. And through it all, Cylus meets every challenge with a bravery that leaves us in awe. He is not defined by hospital rooms or IV lines. He is defined by determination, by spirit, by the way he continues to show up to life even when life has been unbearably unfair to him.
As his mother, my role is both simple and impossibly hard. I cannot take the pain away. I cannot carry the disease for him. All I can do is stay. Hold his hand. Whisper comfort. Advocate fiercely. Love him with everything I have. In the quiet moments—when the machines hum softly and the world seems to pause—I am reminded that love itself is a form of resistance. A declaration that cancer will not have the final word.
We know the statistics. We are painfully aware of how ruthless neuroblastoma can be. But we also know the power of hope, prayer, and persistence. We cling to the small victories: a better appetite, a few steps taken, a smile after a hard day. These moments, fleeting as they may be, are monumental to us. They are proof that joy can still exist alongside pain.
Cylus is a warrior in every sense of the word. His fight is not only about survival—it is about life. About laughter. About moments most of us take for granted. He teaches us that courage is not the absence of fear, but the decision to keep moving forward despite it. Through chemo, immunotherapy, transfusions, and nerve pain, he shows us what true bravery looks like.
This journey is far from over. There will be more scans, more treatments, more unknowns. But each day also brings new strength. New insight. New reasons to hope. Cylus is not his diagnosis. He is a little boy with an unbreakable spirit, surrounded by love that refuses to give up.
In the end, this story is not only about medicine or disease. It is about a child who refuses to surrender, parents who stand unwavering beside him, and the quiet, powerful force of hope that shines even in the darkest moments. Please keep Cylus in your thoughts. Pray for his comfort, his healing, and the courage that continues to carry this tiny warrior forward—one brave day at a time. 🌟💛💙