“The Day We Returned to the Floor Where Hope Began to Fade”.5744

Today was the first day we stepped back onto the 8 QB floor at Children’s Hospital since Will rang the bell after his last dose of chemotherapy, and I did not realize how heavy that single step would feel until my feet actually touched the floor again.

It felt like walking into a memory that still had teeth, a place that remembered us even when we wished, for just a moment, that we could forget.

We stopped by after finishing our clinic day, telling ourselves it was just another visit, just another hallway, just another floor, but nothing about it felt ordinary the second the doors opened.

Back then, the last time we stood there, everything was drenched in hope, and every smile felt earned, and every exhausted breath felt like it was leading us toward something better.

We were seeing positive signs.

We were watching numbers improve.

We were telling ourselves that the poison being pumped into his small, exhausted body was doing exactly what it was supposed to do, that it was winning the war we never asked to fight.

Walking back into that space today felt completely different, as if the walls themselves knew that hope had thinned, stretched, and been asked to carry far more weight than before.

Will, for the most part, had been managing.

His breathing had been under control.

The chest pain that once stole his breath had eased just enough to let him exist instead of simply endure.

The last couple of days had been almost normal, the kind of normal you cling to when your definition of “good” has been rewritten by illness.

Then, on the drive to the hospital this morning, in the quiet space between traffic lights and familiar roads, he casually said, “Mom, I must have slept wrong on my shoulder last night. It’s hurting.”

He lifted his hand and pointed, and the second I saw where his fingers landed, my stomach dropped in a way that words cannot fully explain.

I knew immediately.

The PET scan.

The clavicle tumor.

The spot I had memorized without ever wanting to.

My heart sank so fast it felt like my body forgot how to breathe for a second.

We went through the motions that have become second nature now.

Bloodwork.

Vitals.

Waiting rooms filled with muted televisions and people pretending not to listen to each other’s fears.

Then we sat with his oncologist, trying to read faces the way parents of sick children learn to do, searching for answers before they are spoken out loud.

Will’s alkaline phosphatase was up three hundred points from last week.

Eight hundred.

The highest it has ever been.

If you are familiar with osteosarcoma, you know this number matters more than most, and you know how loudly it can speak without ever making a sound.

It was five hundred at his stage four diagnosis.

It had dropped to one hundred seventy at his last chemotherapy treatment in September, a number we celebrated quietly, carefully, afraid to jinx the relief it gave us.

It is a known tumor marker.

And now it sits in my mind like a pit that refuses to close, whispering over and over again that the cancer may be growing faster than we can keep up with.

As I asked the oncologist questions, trying to sound composed, trying to sound like a mother who still had control over something, Will looked at me and said, “Does that mean the Cabo drug is working, Mama?”

That moment almost broke me in half.

We have never hidden the truth from him.

Not once.

From the day of diagnosis, we made a promise to be honest, because we believe that even children deserve the dignity of knowing what their bodies are facing.

But watching a fourteen-year-old process bad news again, and again, and again is a kind of pain that does not have a name.

How does a child not get beaten down by that weight.

How does he keep believing when his body keeps betraying him.

How does he hold onto faith when the answers never come wrapped in certainty or comfort.

And when he does fall short, when the fear catches up to him, how does he find the strength to stand back up and keep going.

I am so tired.

I am the kind of tired that sleep does not touch.

The kind of tired that settles into your bones and stays there.

I am too tired to even cry, and that somehow scares me more than the tears ever did.

The unknown looms over everything.

The waiting stretches each day longer than the last.

The next scans on January eighth feel close enough to haunt my thoughts but far enough away to feel cruel.

The bloodwork numbers replay in my head on a loop, making it feel like this disease is literally eating him alive while I stand by, helpless, clinging to a mustard seed of hope for a miracle.

For mountains to move.

For something impossible to bend, just once, in our favor.

I am mentally drained in ways I did not know were possible.

I am spiritually worn, scraped thin by prayers that feel heavy on my tongue.

And tonight, after everything, all I can say is this.

God, we need a miracle.

Not a small one.

Not a subtle one.

We need something undeniable.

Whatever Your plan may be, please give me the strength You gave Will just yesterday, the strength to pick myself back up when my legs feel like they cannot carry me another step.

God, I know You will not forsake me, but I need something, anything, to feel Your presence near enough to touch so I can continue on.

Please be with my family.

Please hold Will when I cannot protect him from what his body is facing.

Please remind us that we are not walking this road alone, even when it feels impossibly lonely.

In Jesus’ name,

Amen.

 

Saying Goodbye to Christina, Three Days Before Christmas.5819

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