Yesterday was a sleepy day. 

 

Esther and Trace came in late afternoon. Trace really hates coming in here—especially when Avry isn’t feeling well. 
This room is much smaller than our normal one, and I’m so grateful for the comfy hide-a-bed on the oncology floor. That makes such a difference for all of us. 

 

Jake stayed with Avry while I went out for a good, long walk. I’ve got to get more exercise in. I’m way too young to feel this stiff and old! 

 

I explained all
Of Avry’s signs of pain to the staff again today-her high heart rate, the pained expressions, the way she cries out when she moves. She will never actually say she’s in pain at the hospital. At home, yes. But here, in her mind, pain means something worse is coming—a shot, a med, a doctor’s exam. It’s heartbreaking. We’ve built strong trust with our oncology team, but there’s still this tension. Some providers get nervous that parents just want to sedate their kids. 🙈 Jake had some words with the anesthesiologist—he’s the one who controls the PCA—and Jake was advocating hard. 

 

Around 6 PM, our girl finally woke up and wanted to sit up and play! The nurse had been encouraging me to get her up and walking, but I just couldn’t force her. When she’s ready and feels strong enough, she will be the one asking to get out of this bed and out of this room. That’s just who she is. I know that’s not every child—but I know  her. 

 

She sat up with my help, and I propped her with pillows. She was so happy—smiling, cheerful, herself. She wanted to call Crystal and ask if she was coming to the hospital today! Crystal didn’t answer at first, so we FaceTimed Miss Amy. Then Crystal called us back, and I could not believe how well Avry seemed to be doing. Avry was so pleased! 

 

She played for a bit with the sticker books Kelli had brought—totally focused and content. Then Brooke popped in from 3 East! Avry lit up the second she saw her and couldn’t wait to tell her all about everything that’s been going on. 

 

It reminded me—again—how deeply Brooke knows her. She’s probably been with Avry more than any other nurse. She understands her. And their conversation? It felt like family. These people truly are part of our lives. 

 

This recovery process is a delicate dance. We have to manage Avry’s pain well enough so she can sit up, stand, and eventually walk—because the sooner she moves, the sooner her intestines will wake up. That means we can start feedings. But we also want to start weaning her off the morphine drip—and we can’t do that until she’s able to eat. Everything is connected. One step at a time. 

 

Tonight, she’s very tired. 

But it’s been a good day. 

 

Wednesday, June 19 

This morning started with a boom and a bang! We weren’t even awake yet before a swarm of departments came hustling into the room. The anesthesiologist was clearly frustrated—there had been a miscommunication between doctors about whether to continue the morphine or start oxycodone while decreasing the morphine. 

 

I’m strongly against starting oxy. Her stomach is completely empty, and giving her oxycodone will only cause vomiting. She just had surgery. We cannot risk vomiting. But they’re very anti–morphine drip. They’re always so paranoid about parents relying too much on it. 🙈 clearly oncology isn’t their specialty. 

This isn’t our first rodeo. We literally just did two weeks of recovery with a morphine drip three weeks ago. 

 

Jake had words again—this time with both the anesthesiologist and the nurse practitioner. His drill sergeant background can come across intimidating at first (no surprise to me), but every single time, they come around. And when they do, there’s appreciation and deep respect for the way he fights for our girl. 

 

Then the nurse started having issues with the feeding tube. It was placed differently in the OR this time, and it wasn’t working right. She brought in the charge nurse to help troubleshoot. I was exhausted and my brain just wasn’t working. So I asked Jake. Calmly, he made a few suggestions—and sure enough, it worked. He is amazing at this stuff. He always has been. 

 

Jake had originally planned to go to work today, but neither of us felt ready to do this alone yet. Still, he insisted I go home to the chiropractor. I’ve had a headache for over a week straight, and I know it’s from laying in these hospital beds for too long—my neck is totally out of  whack. 

 

So I buzzed home, went to the chiropractor, and was almost back to the hospital when Jake called: Dr. Cohn came in and granted our request—we’re moving back to the oncology floor! This is nothing they can’t handle over there- besides they know Avry better. 

 

We packed up and moved, and Avry was so excited to be “home.” 

 

We tried a new pain medication, and soon after, she sat straight up on her own! She had us all laughing—being her witty, hilarious self again. It felt so good to see that spark. 

 

She even asked for rice. 

 

Jake ran to the café to get some—but they didn’t have any. He came back with chocolate cake instead. At this point, we just need her to eat something solid so we can determine if she’s ready to start feedings. It may be Thursday afternoon (72 hours post-op) before her intestines are awake enough to begin. Once we start feeds, we can slowly begin to wean her off the continuous morphine. 

 

She still needs a lot of rest to heal, but also enough movement to make progress. And with a three-year-old, it’s such a fine line to walk. 

 

She wanted so badly to go outside! We got the green light, and Michael brought her wheelchair over. Lifting her takes some strategy, but we’re well-equipped for that by now. 

 

She can’t wait to get the IV out of her arm. We’re so thankful we don’t have to deal with these all the time, thanks to the Broviac catheter. 

 

We took her outside to blow bubbles for a few minutes—it was so good for all of us. I sent Esther to Target for rice and yogurt, and Avry sat up and painted a little while I tidied up her space. 

 

Then Jake and Trace arrived! Avry asked Jake to bring her karaoke machine in. It was the sweetest thing to hear her little voice singing again. 

Today is such a good day. 

She is doing incredibly well—and we’re just so grateful. 

 

Today, my team is in Dallas. I’ve received so many messages filled with prayer, love, and support—and it means the world to us. If you’re reading this, please know: we can’t believe we’re not there with you this year… but at the same time, there’s truly no place we’d rather be than right here with our sweet girl. We love yall and miss you! 

 

We are grateful for God’s protection. 

Grateful for the healing we’re witnessing with our own eyes. 

Grateful for the Dell children’s medical oncology floor that feels like home. 

And so deeply grateful for the financial provision that allowed Jake to be here with us this week. 

 

From the bottom of our hearts—thank you!! We deeply appreciate every single one of you.