This is an update that no parent ever wants to write, but one we must share: Liam is struggling.
We are in a very hard place right now, caught in a maze of questions with no clear answers.
The episodes he’s been experiencing are confusing and frightening.
We don’t know if they are caused by delirium from sedation, by unbearable pain, or by brain damage from the cancer.
All we know is that he is not himself.
When Liam is awake, he is extremely agitated.
This isn’t the boy we know—the gentle, sweet child who always surprised us with his resilience.
Instead, he pinches hard, kicks with surprising force, and tries to rip out his cords and lines.
It breaks our hearts to see him like this, because it has never been who Liam is.
It feels like the disease is stealing not only his body, but his spirit too.
We do our best to hold him safely, wrapping him in what we call a “love hold,” so that he doesn’t hurt himself.
It is not restraint out of punishment, but out of love, out of a desperate attempt to protect him from the pain and confusion that overwhelms him.
While we hold him, the care team is doing everything they can to figure out how to ease his suffering, to bring him back even a little bit of peace.
But this is hard.
Harder than words can say.
Our nerves are completely shot, our hearts exhausted, and yet we have no choice but to keep going for Liam.
We cannot take him home like this.
It would be unsafe.
He is literally hurting himself, and possibly enduring pain far greater than we can see.
His cancer has spread everywhere.
It is in his central nervous system, in his arm and leg bones, and in a spot near his cheek.
He is in extreme pain, and we are watching helplessly as he suffers.
And in that suffering, we are suffering too.
Nothing about this feels okay.
We know many people mean well when they reach out, suggesting herbs, diets, and natural remedies.
We were patient for a while, responding gently, because we understood these comments came from a place of care.
But now—we are tired.
We cannot keep answering messages about miracle cures when our child is literally fighting for his life in front of us.
We are done.
We are hurting too deeply for that.
Please, if you feel the need to tell us about something that worked for someone else, know that we will block those messages immediately.
We are not being unkind; we are protecting our hearts in the midst of unbearable pain.
To those who have lifted us up instead, who have sent prayers, words of love, and donations—we thank you with all our hearts.
You are not intruding.
You are not a burden.
You are helping us feel less alone in this crushing time.
We feel your love holding us, and it matters more than words can ever say.
Right now, Liam is also neutropenic.
That means he has no immune system at all.
The smallest germ, the tiniest touch, could cause an infection that would hasten his death.
So we must keep our boundaries firm.
We cannot allow many people to come and touch him, no matter how much we know you care.
This time is sacred family time.
This is when we are holding him close, making memories, whispering love into his ears while we still can.
If God chooses to heal Liam, we know He can.
We believe in His power.
But if His plan is different, then we will trust Him still.
We will hold on to faith, even when it feels impossibly heavy.
When that day comes, when Liam is no longer here, we will welcome everyone to come to his funeral and celebrate his life with us.
But until then, this is family time.
This is the time to surround him with love, comfort, and peace.
We pray for strength.
We pray for comfort.
We pray for God’s mercy in the face of Liam’s suffering.
Our deepest hope is that in these final days, he can find rest, that he can be freed from the agitation and pain, that he can simply know he is loved beyond measure.
Nothing about this journey is okay, but Liam is still our son.
He is still the boy who has lit up our lives in countless ways.
And until his last breath, we will be here, loving him fiercely, holding him tightly, and praying that his spirit is wrapped in peace.
