Chemo day four arrived quietly, without ceremony, like a storm that had already been announced but still managed to steal the breath from everyone who stood beneath its sky.
Immunotherapy day three followed closely behind it, stacking weight upon weight onto a body that was already exhausted, already bruised by months of fighting a disease that did not care how small or young its opponent was.
Cylus lay in his hospital bed, his body still, but his pain loud and relentless, echoing through every nerve that the treatment touched.
The immunotherapy caused significant nerve pain, a kind of pain that could not be localized or reasoned with, because it did not belong to one place, but to his entire nervous system.
It traveled like electricity through his limbs, across his back, into his chest, and down to places that words could not easily describe.
A PCA pump worked steadily beside him, delivering controlled relief, doing its best to soften the edges of suffering that no child should ever have to endure.
Even with medication, the pain remained heavy, pressing down on him in waves that came without warning.
High fevers flared, then receded, only to return again, as his immune system reacted fiercely to a treatment designed to save him but that demanded so much in return.
Neuroblastoma is not a gentle disease.
It is an immature nerve cell cancer of the sympathetic nervous system, meaning it lives where the body’s most basic signals are born.
It grows where fear, movement, and survival instincts reside, and when it is attacked, the body feels that assault everywhere.
Dinutuximab, the immunotherapy drug being used, is an antibody that binds to GD2 antigens found on the surface of neuroblastoma cells.
In doing so, it damages those cancer cells, but it also harms healthy nerve cells in the process.
The result is pain that feels infinite to the one experiencing it, even if it is measured in milligrams and monitored on charts by professionals.
On Friday morning, an X-ray of Cylus’s pelvis was ordered.
It was a small test compared to the CT scans and MIBG scans that had become familiar landmarks on this long road.
An X-ray does not offer the same level of clarity, and no one expected miracles from it.
Still, when the results came back, the room felt different.
For the first time in many months, there were no visible new tumors.
There was no clear sign of progression in that area.
The word “stable” appeared in the report, quiet but powerful.
It was not a declaration of victory, but it was a pause in the attack, a moment where the disease had not advanced.
For a family that had been living in constant forward motion of bad news, stability felt like oxygen.
As a mother, she stood at his bedside holding that word carefully, knowing how fragile it was.
She had learned not to celebrate too loudly, not to let hope run ahead unguarded.
But she also knew that moments like this mattered, because they were proof that the fight was not meaningless.
Only a week earlier, they had celebrated Cylus’s birthday.
He had been walking then.
He had been eating his favorite foods, smiling with crumbs at the corners of his mouth.
He had been playing, laughing, and moving through the world like a child who did not carry a diagnosis heavier than his own body.
Those memories were still fresh, still painful in their contrast.
Because now, he was back in bed, wires and tubes surrounding him, his small body fighting a battle he did not understand.
He did not know what chemotherapy meant.
He did not understand immunotherapy, antibodies, or antigens.
He only knew that his body hurt, and that it kept hurting again and again.
Nothing had ever broken his mother’s heart the way watching this cycle repeat itself did.
The helplessness was absolute.
The instinct to protect screamed inside her, demanding that she take the pain away, that she trade places with him, that she carry this burden herself.
But biology does not allow that kind of exchange.
She could only stay.
She could only hold his hand, speak softly, and remind him that he was not alone, even when the pain made the world feel very small.
This round of immunotherapy was not his first.
Back in August, during his initial exposure to this medication, his reactions had been more severe.
This time, his body was responding slightly better, adapting in small ways that doctors recognized and quietly noted.
Even so, “better” was a relative word, and pain was still pain.
And as always, his mother wished she could endure it for him.
Still, Cylus was incredible.
Even in agony, he found ways to push through, to breathe, to exist within moments that were unbearably difficult.
Strength did not always look like bravery.
Sometimes it looked like simply staying awake, or choosing to take one more breath when everything hurt.
News also came from CHOP, offering another fragile thread of hope.
Initial approval issues had been resolved.
They were now one step closer to potential clinical trials that could offer a better outcome against this violent disease.
It was not a promise.
It was not a cure.
But it was a door that had cracked open, and for families like theirs, doors mattered.
Neuroblastoma is the most common solid tumor cancer in children under the age of five.
It is also among the top five deadliest pediatric cancers.
Those facts lived in the background of every decision, every sleepless night, every whispered prayer.
They had hoped to go home on Tuesday.
Home had become a concept filled with longing, a place associated with normalcy and rest.
But blood transfusions were needed the day before, pushing their departure back by nearly half a day.
Plans shifted, as they always did.
Expectations bent under the reality of treatment.
Still, Cylus pushed forward.
And his parents walked every step beside him, adjusting their pace to match his strength.
Then, in the evening, complications arrived without warning.
About an hour earlier, Cylus’s oxygen levels suddenly dropped.
The numbers fell fast, plunging to 50 percent without explanation.
Alarms sounded.
Nurses and doctors rushed into the room, their movements fast but controlled.
An emergency chest X-ray was ordered immediately.
The image revealed significant fluid buildup in his lungs.
Immunotherapy, while powerful, carries risks.
One of those risks is capillary leak syndrome, a condition where fluid escapes from blood vessels and accumulates where it should not.
Instead of being filtered out through urine, the fluid had collected in Cylus’s lungs.
Breathing became harder.
The room filled again with tension, with urgency, with the familiar fear that no family ever truly gets used to.
Additional medications were started to help remove the fluid.
The goal was clear.
The sooner the fluid left his lungs, the better his chances of stabilizing.
Despite everything, Cylus remained stable.
He was holding on.
He was still fighting.
So close to the finish line of this round, they just needed to get there.
This was hard.
There was no denying it.
But they had learned something important along the way.
They could do hard things.
And together, they would keep going.
