Day 135 — Between Endings and Beginnings.2827
Day 135 — Between Endings and Beginnings 🌙🦋
It’s strange how numbers can carry so much weight.
One hundred and thirty-five days.
That’s how long we’ve been here — living inside this fight, breathing through every fear, waiting for every test result as if it were a message from fate itself.
And now, there are only four days left.
Four days until we say goodbye to the “smart drug” treatment.
Four more mornings of watching the nurse hang the IV bag, four more nights of whispering prayers under hospital lights.
After that, a break — a small pause before the next storm, before the next chapter of this endless story begins.
They’ll soon test him again, searching for any trace of leukemia cells.
But I’ve already decided what the answer will be.
There won’t be any.
There can’t be any.
It will be gone.
Finished.
Because that’s the only ending I can accept.
This week, I met a new mother in the ward.
Her son had just been diagnosed.
She came from a nearby town — from my world, my streets, my language.
And when she spoke, it was like hearing my own voice echo from five months ago.
Her eyes were wide, shimmering with confusion and fear.
Her hands fidgeted as she tried to look brave in front of her little boy.
She asked me softly, “How long will the treatment take?”
I wanted to tell her something hopeful, something solid.
But I couldn’t.
“When will he get better?” she asked again.
I looked at her — and at the tiny boy sitting beside her, holding a stuffed bear tighter than anything else in the world — and I realized how fragile every word felt.
How could I promise her healing when I was still standing in the middle of the battlefield myself?
“What’s waiting for us?” she asked finally, her voice breaking.
And once again, I had no answer.
Because no one ever truly knows.
So I smiled as gently as I could and said the only truth I’ve learned in this place:
“Every child with leukemia writes their own book. Welcome to ours.”
She nodded, but her eyes filled with tears.
I saw the war beginning inside her — the mix of hope and despair, of faith and fear.
She reminded me of myself from those early days: sleepless, terrified, clinging to any fragment of reassurance that might keep me standing.
I remember those nights — how the hospital corridor seemed to stretch forever, how every beep of the machines sounded like a heartbeat counting down.
Back then, I thought I’d never find my way through the dark.
But somehow, we did.
Somehow, my little boy and I are still here — breathing, fighting, believing.
Now, as I look at him sleeping beside me, with tubes running to his tiny arms and the faint hum of machines keeping rhythm with his breaths, I feel something I didn’t before.
Peace — fragile, trembling peace.
The kind that comes only after you’ve walked through fire and survived.
Still, I don’t know what lies ahead.
After this treatment ends, what comes next?
Maybe a bone marrow transplant.
Maybe another round of waiting, testing, hoping.
Even the doctors speak in uncertain tones: “If everything goes as expected,” they say, as if afraid to promise too much.
That’s the hardest part of this journey — the not knowing.
The way the future feels like a room you can’t see into, only feel through the cracks.
Leukemia runs this war.
It dictates when we move, when we rest, when we hope.
But what it doesn’t know is that we’re stronger than it thinks.
Because we are still standing.
Still waking up every morning.
Still whispering goodnight prayers.
Still loving, even when the fear screams louder than anything else.
And that, I’ve learned, is how you win.
Not with certainty.
Not with control.
But with quiet, relentless faith — the kind that refuses to die.
Sometimes, when I watch the IV drip into his veins, I imagine the medicine as light — tiny golden drops fighting their way through the darkness inside him.
Each drop whispers: “You’re not alone. I’m here to help.”
And I think, maybe, that’s what healing really is.
Not the sudden disappearance of pain, but the slow, steady arrival of hope.
These last few days feel like a ceremony.
A farewell to the bad cells, a quiet welcome to the new.
A sacred ritual of endings and beginnings.
As if his body is hosting its own celebration — saying goodbye to what tried to destroy it, and inviting what will help it live.
Sometimes I close my eyes and imagine that inside him, tiny wars are being fought — the bad cells fading like shadows at dawn, the good ones rising, shining, taking their place.
A world within him being rebuilt from the ruins.
That’s what this journey feels like: standing in a ceremony of rebirth.
A world where pain and beauty coexist, where destruction and creation happen in the same breath.
Where we say goodbye with trembling lips but open our hearts wide for whatever comes next.
And though I don’t know how many more days or weeks or months we have ahead, I know this:
We are winning.
He is winning.
Leukemia just hasn’t realized it yet.
Five months ago, I couldn’t have imagined feeling this kind of strength.
Back then, everything was chaos — fear, confusion, grief.
Now, even in the unknown, I’ve learned to find small anchors: the warmth of his hand in mine, the way his eyelashes flutter in sleep, the laughter that sometimes escapes even in the middle of pain.
Maybe healing isn’t something that happens all at once.
Maybe it’s something that builds quietly, moment by moment, heartbeat by heartbeat.
So I’ll keep showing up.
I’ll keep watching the sunrise over the hospital roof.
I’ll keep whispering to him that everything is going to be okay — even on the days I’m not sure myself.
Because that’s what mothers do.
We believe until belief becomes reality.
And someday, when this chapter ends, I’ll look back and realize that we didn’t just survive — we transformed.
That this fight, as cruel as it has been, also taught us what love looks like when it’s stripped to its purest form.
Right now, I’m standing in that space between goodbye and hello — between what we’ve lost and what we’re about to gain.
It’s a sacred space, fragile but alive.
A ceremony of hope.
A dance between darkness and dawn.
A quiet promise whispered to the stars:
We’re still here.
We’re still fighting.
And we are not giving up.
Because somewhere in this world where the bad fades and the good rises again, my son’s story — our story — is still being written.
And it will end with the words:
“He made it.” 🦋💛
Hope in the Operating Room: Evie’s Story of Strength.1522
Evie’s Journey Through Surgery and Hope
When the doors of the operating room finally opened, our hearts skipped a beat. Hours of waiting had felt like days, each minute stretching endlessly as we prayed, hoped, and clung to every ounce of faith we had. Then, the moment came: Evie was out of surgery.
The doctor greeted us with that calm tone we’ve learned to lean on—steady, reassuring, though never dismissing the seriousness of what our little girl had just endured. He carried with him not just words, but also images—pictures taken during the procedure. These images were both medical and deeply personal, because they showed the hidden world inside Evie’s body, the place where her battle has been quietly raging.
He explained the process with patience, carefully walking us through each step. First, he placed a balloon into Evie’s pylorus. The pylorus, the small muscular valve that controls the passage of food from the stomach into the small intestine, has been one of the major culprits in her struggles. For Evie, it has been too tight, too uncooperative, holding things in when they need to move forward. The doctor dilated and stretched that area with the balloon, gently easing open what had been closed off.
Then came a step we hadn’t expected: Botox. Not for cosmetic reasons, of course, but as a medical intervention. He explained how Botox could be injected into the pylorus to temporarily paralyze the sphincter muscle, forcing it to relax. By doing this, the muscle could stop fighting against the natural movement of food and fluids, improving gastric emptying. The word “relax” became something more than a medical term—it was a promise of potential relief, a hope that Evie’s body could finally find some rest from the constant strain.
But that wasn’t all. The procedure continued into Evie’s small bowel, where another balloon was used to dilate and stretch the narrowed passage. It was during this part that the doctor noticed an inflamed, red area at the entrance of her small bowel. Concern flickered across his face, but his voice remained steady as he told us he had taken extra biopsies there. He also took additional samples throughout, wanting to be thorough and leave no questions unanswered.
We were told that biopsy results should be ready by Friday. Just a few days, but in the world of waiting for answers about your child’s health, even a few days can feel like an eternity. Until then, we hold our breath, balancing fear and hope.
Through all of this, Evie amazed everyone once again. The doctor smiled as he said, “She did really well during all of it.” Words that felt like music to our ears. The surgical team had been not only skilled but also kind, providing comfort that extended beyond the operating table. For parents like us, that comfort is almost as important as the procedure itself.
And in a small, sweet detail that warmed our hearts, Evie wasn’t alone when she went in. She brought Fiona with her—her cherished companion, a symbol of safety and love. For those from Cincinnati, Fiona needs no introduction. For us, Fiona is more than just a stuffed animal or a character—she’s Evie’s anchor, her little piece of home carried into the sterile, intimidating world of surgery.
After the operation, we gathered in a small conference room where the medical team updated us. They told us that a comprehensive treatment plan had already been sent to her team at CHOP (Children’s Hospital of Philadelphia). This plan is not just a single document; it’s a roadmap for Evie’s future care. Every word on that paper represents another set of minds thinking, planning, and fighting for our daughter’s well-being.
The next step, we were told, will be getting Evie into the Autonomic Clinic. This clinic specializes in conditions like hers, where the nervous system struggles to regulate basic functions that most of us take for granted. For Evie, that means a chance at more targeted care, more answers, and hopefully more stability in her day-to-day life.
As we sat and absorbed everything, one thought echoed in my mind: gratitude. Gratitude for the doctors and nurses who stood by her side. Gratitude for every prayer whispered by friends, family, and even strangers. Gratitude for Evie’s own strength—the quiet resilience of a little girl who has faced more in her short years than many adults ever will.
When we finally saw her in recovery, my breath caught. There she was, resting peacefully, her small body surrounded by wires and monitors, but her spirit shining through even in that vulnerable state. The breathing mask had left a bit of swelling and irritation, but it was nothing compared to the battles she’s already fought. She stirred, eyelids fluttering, and then opened her eyes just enough to recognize us. That moment—her gaze, her presence—was everything.
She is doing well, the doctors reminded us. Better than expected, in fact. And as I looked at her, I realized how much courage is contained in such a tiny frame. Evie doesn’t complain, doesn’t ask why. She simply endures, day by day, trusting us to be her voice, her advocates, her unwavering support.
Later that evening, as she continued to rest, I replayed the day in my mind. The fear, the waiting, the relief, the cautious optimism. Each stage of this journey carries its own weight, but also its own gifts. Today’s gift is this: Evie came through. She is resting. She is here.
Friday’s biopsy results will bring clarity, perhaps new challenges, perhaps new hope. But for tonight, we choose to focus on the victories we have. The successful dilation. The Botox treatment that may give her stomach a chance to work more freely. The biopsies that may finally provide answers. The treatment plan already in motion. And above all, Evie’s strength, shining brighter than any fear we carry.
We continue to ask for prayers—for healing, for comfort, for guidance for her medical team. Every kind word, every thought sent her way, is felt and cherished. Evie is our warrior, our bright light, and we will continue walking this road with her, step by step, hand in hand, heart to heart.
Tonight, as she sleeps beside me, I watch her chest rise and fall, and I whisper my own silent prayer. For peace. For strength. For better days ahead. For the little girl who deserves nothing less than a life full of love, laughter, and freedom from pain.
And as I tuck Fiona back into her arms, I realize that hope is not just something we hold onto—it’s something Evie teaches us, every single day.
