Sept 21- back to the hospital
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Sept 21 – Back to the Hospital
We were all dreading today. Jake and I barely slept last night, knowing this marks the beginning of Avry’s second transplant hospital stay. Our time at home felt like a miracle—after weeks of chaos, it finally seemed like we had “the home fires under control.”
But this morning, the air in our home was heavy. Jake and I were exhausted, and Avry was irritable, as if she sensed what was coming. I slipped into my closet pinching myself, ‘Get it together, Rose. This is how it went last transplant. You have to dig deep and set the tone.’ But the truth? I just wanted to be weak for once. I wanted to collapse into bed, cry, and let someone else carry me. Why does being a mother mean I’m the one who sets the tone for everyone else’s experience?
I hadn’t even packed yet—the tubs from last time still sat in the office corner. I was so glad I had repacked them right after we came home so it wouldn’t take me long to put the rest of the essentials in.
Jake and Trace went to church while I stayed behind, tending to meds and Avry’s tubies. Church takes everything out of us—a day of prep, half a day to recover, and supernatural strength just to make it through. Today it wasn’t even a question; we didn’t go. By 10:30 we were finished with meds and took a long golf cart ride. You can’t stay sad when Avry is singing at the top of her lungs—“Mom, sing with me!”
Before leaving, we had a sweet family lunch. But just before that, Jake was on the floor wrestling with the kids, carrying them both through the house as they squealed with laughter. Belly laughs. Pure joy. The kind of moment you want to freeze in time. Which only made leaving harder. The splinters of leaving Trace behind always cut deep. Leaving home for chemo is never easy—but leaving for high-dose chemo and a second transplant? It feels impossible.
On the drive in, Jake said, “What if we just elope?”—a moment of levity we needed, though of course it isn’t an option when we’re fighting for Avry’s life. Avry’s anxiety rose too. “Are we going to have to stay forever?” she whispered.
She noticed everything on the way in—the bunny-shaped cloud, an airplane landing, the thought of a road trip someday when we’re home. Then came the hard questions: Will they put in another tubie? Is it just medicine they have to give me through my tubies? She made me promise her hot chocolate when we get home.
Walking back into the hospital felt surreal. It’s only been three weeks since we were here, but it feels like a lifetime. Home allowed us to forget, just for a moment, the horrors of this life. I asked Jake once, “Have we really gone through all of this, or has it just been a nightmare?” His answer: “We’ve been living a nightmare. And somehow the nightmare has become the norm.”
But then—God. The doors opened to Three East, and there was Brooke. Avry screamed with joy, and Brooke ran straight to us with open arms. We had just been talking about her, wondering if she was here. What a gift. These halls feel different with Brooke walking them. I can’t imagine doing this without her.
At the nurses’ station, Avry noticed the ‘go
Gold’ for childhood cancer decorations. Elizabeth, the charge nurse, was on duty—just like the day we were first admitted. She’s gentle, quiet, and motherly.
But when Avry sat down on her bed, she broke. “Mom, this is NOT what I wanted! I just wanted to live at home now!” I scooped her up and asked if she was mad. “Yes!” she cried. I didn’t tell her to stop. I let her feel it. And because of that, she recovered quickly. Soon she was on the couch, pointing out things out the window, jumping around, asking over and over, “When are we going home? Do we have to stay tonight? I just love my big bed at home with my family. Please ask the doctors when we can go home.”
I know, baby. I knowwwww.
Tonight we’re already doing crafts—thank God another craft box came in the mail, because we blew through three days’ worth in just a few hours. Now she’s snuggled next to me, precious and sleepy. 🌈💖
And here we are. Somehow, through all the dread and the ache, we are being carried by your prayers. There’s no other explanation for the peace and calm in the middle of this. Trace called me and asked if it was better than last time. “Yes,” I told him. “So much better.” And I am holding onto that.
I’m hoping to rally prayer warriors in a fresh way this stay. We need it. Because nothing—nothing—can prepare you for the magnitude of watching professionals take your baby from running and laughing to teetering on the edge of survival, fighting for her life every single moment.
Right now we don’t need gifts. We need prayer.
Thank you for caring. Thank you for carrying us.
#miraclesforavryjo 🎗️🌈🦩
#neuroblastomawarrior #stage4strong #2ndtransplant
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