“This will be a vulnerable post, one that I wish with all my heart I never had to write.
The last few days have been a blur, and I’ve been unable to share an update, but now in this small pocket of quiet, I find the strength to put words together.
Cylus has been through more than most adults could ever imagine, and yet he is just a child.
After a grueling week working to resolve kidney stone issues, Sunday night came crashing down on us in a way that none of us expected.
It was during a football game that Cylus woke up.
I noticed something was wrong immediately—his left eye was closing slower than the right.
We tried to test him at home, asking him to engage, to smile, to respond, hoping it was nothing.
But the signs became clearer and clearer.
From Friday through Saturday, he had been complaining about headaches, pain in his left eye, and discomfort in his left ear.
Within an hour of waking that Sunday night, the left side of his face stopped responding altogether.
Panic surged through us, and we rushed him to the emergency room.
Doctors immediately began ruling out the worst possibilities—stroke, brain mass, brain bleed.
CT scans came back, and for a brief moment, we were able to exhale.
But the fear did not leave.
We were admitted into the hospital, and within 24 hours, his face remained paralyzed.
The next step was an MRI.
Waiting for those results felt like an eternity, every second heavy with dread.
Finally, the answers came.
Cylus has a new mass at the base of his skull on the left side.
The mass is pressing against his facial nerve, causing the paralysis we see.
And yet, in that moment of despair, there was also relief.
His cancer had not spread to his brain.
There were no other new masses discovered.
It is hard to explain what it feels like to hold both devastation and relief in the same breath.
As parents, we are grateful it isn’t worse.
But we are still broken by what it is.
Tomorrow, we are scheduled to move forward with MIBG therapy.
It is a treatment of liquid radiation that lasts four days.
Four days of isolation.
Four days of watching as our little boy undergoes something no child should ever have to endure.
The goal is to “nuke” the cancer that keeps advancing, to try to stop what feels unstoppable.
In previous updates, I have shared the list of battles Cylus has faced.
It is a list no child should carry.
He was declared refractory.
He has new lesions in his pelvis and femur.
He suffered a knee fracture.
He went through COVID.
He endured the agony of a kidney stone.
And now, this facial paralysis caused by a new mass.
Every time we think we’ve seen the worst, another storm arrives.
And still, Cylus fights.
He fights with the quiet strength of a child who refuses to surrender, even as his body is exhausted from carrying the weight of it all.
We are praying with every fiber of our beings.
Praying from the pits of our souls.
Praying with every fragment of humility left inside of us.
Please, God, let this treatment work.
We desperately need a miracle.
We are holding on to the belief that it can happen.
That somehow, against the odds, the tide can turn.
But watching this disease take over his little body has been a grief like no other.
There are no words to describe the helplessness.
No words to describe the agony of watching your child fade in ways you cannot stop.
And yet, we cling to hope because it is all we have left.
We are asking for prayers—not just casual words, but deep, earnest prayers.
Prayers for healing.
Prayers for strength.
Prayers for a miracle.
We ask that you hold Cylus in your hearts as tightly as we do in ours.
We ask that you believe with us, even when it feels impossible.
We ask that you stand with us in this fight.
To our family, our friends, and every single supporter who has walked with us through this hell—thank you.
We could not do this without you.
Your love, your messages, your prayers—they hold us up when we cannot stand on our own.
This journey has stripped us bare.
It has broken us in ways we never thought possible.
But it has also shown us the depth of community, the strength of love, and the power of faith.
Cylus is more than his illness.
He is a light.
He is a fighter.
He is our baby, and we believe still in a miracle for him.
Please, God.
Please let this work.
Please let us hold on to our boy a little longer.”
Cylus’s mother.
