Monday, June 16 – Surgery Day

We arrived at the hospital at 8:00 this morning. Labs were drawn, and to our surprise, Avry didn’t need platelets after all—which gave us two hours before needing to check in for surgery.

NP Katelyn discussed the schedule with us. After transplant and radiation- there’s 5 more cycles of chemo
And immunotherapy followed by 2 years of a drug she’ll need to take.  They told us this in  March. We just didn’t hear it. We certainly heard it today. 

We decided to drive to the park to soak up some calm. Avry lit up when she saw the ducks, especially watching a little lady feed them.  The swings overlooking the lake caught her attention, but it wasn’t long before the tiredness started to show.

Right then, we got a call saying we could come in early. So we headed back to the hospital, and I finally got to meet a fellow neuroblastoma mama I’ve been chatting with. Her son is Avry’s age and just finished radiation. We hugged, and in that hug was a quiet understanding—two moms who still smile even while carrying so much pain.

Back inside, Avry was devastated that she didn’t get to go to her white bed in her room. She hates the pre-op rooms—they terrify her. The trauma has worn deep, and even we, her parents, aren’t always trusted in those moments.

Dr. Naiditch came in to talk with us. She’s incredibly kind and gentle. Jake’s first comment was, “She knows how to shake hands”—a firm grip and eye contact, which in his book says a lot about someone’s character. We needed to mark Avry’s right side for surgery, and she was completely distraught.

The consents were next—those familiar pages that spell out every possible risk, ending with the haunting phrase “including death.” We’ve signed so many of them by now that it feels almost automatic. But when you get a new nurse who explains every word like it’s your first time, it all lands heavy again.

Friday, Jake had a long conversation with Dr. Wells—and it was heard. 🙌🙌 There will be no more separation trauma. They suited me up in a full bunny suit so I could go all the way into the OR with Avry. She and Jake couldn’t stop laughing—I joked that I needed a bumper sticker on the back: “Caution: Objects appear larger than they are.”

Jake’s eyes were red most of the morning. I couldn’t look at him. One of us has to stay composed.

We rolled down the hallway with Janessa beside us. Avry was smiling big, even through the fear. But when we entered the OR, her smile faded. She was scared.

They gave her meds, and she fell asleep in my arms. The nurse anesthetist was a true gift—so kind and steady, promising: “I love Avry’s story. I’ve got her.”

Janessa and I stepped out and found Jake.

It was another hour before the surgery actually began. At 1:30, they called to say Dr. Naiditch had made the first incision.

We’re not really okay. But we have each other. And for that—we are deeply, overwhelmingly grateful.

Thank you to our prayer warriors for holding us up today. You are felt. You are carrying us.  We couldn’t do it without you.