We’re Home again!!

CcaJOYrx came into Avry’s isolation room and the clinic with her guitar. She’s there every time we’ve gone to clinic, and she truly is the sweetest lady! She sings for hours to the children, and she has that special personality they instantly love and trust. She asked Avry what song she’d like to hear, and Avry said “Down by the Bay.” It’s a silly little song that doesn’t make much sense, but it sparks creativity with rhymes. 

 

One of the first times Avry was waking up from sedation, Jake sang that song to her—and she quickly corrected him for “singing it wrong.” She wasn’t even fully awake yet, still had her oxygen mask on, but she sped it up and made up a silly rhyme we’d never heard before. To her, that version was the official version, and now it’s become one of her favorites. You can imagine how thrilled she was when the guitar lady knew her song and even sang verses we had never heard before. Seeing Avry’s face light up like that was priceless! 

 

Later, when Avry woke up, we checked her temperature several times in 15-minute intervals. Thankfully it finally came down, but her heart rate still wasn’t great. While Jake stepped out to start the car, she leveled out and we all breathed a big sigh of relief. I hadn’t even thought to grab the go-bag in case we had to stay the night—honestly, it didn’t cross my mind that we might have an unexpected admission between now and September 20. But that wave of dread washed over me, and I realized just how much I wanted to be home tonight as a family. We’re still monitoring her heart rate here at home. 

 

Avry really wanted to paint pumpkins, and Jake promised to stop at Callahan’s on the way home, but we didn’t make it in time. She was so disappointed. 

 

When we got home, Meg had supper waiting. So many clinic nights we’ve come back exhausted, with nothing substantial in the house and no energy for takeout. Those nights end in PB&J or ramen for the kids. But tonight—we came home to comfort food, sat around the table, and even had the dinner mess whisked away afterwards. That’s our RICH. Holding hands around the dinner table. (Avry managed four bites of mashed potatoes and a few tiny bites of pumpkin cake.) 

 

She was so tired by bedtime. We got her ready, then went for a sunset golf cart ride. Hearing her sing “I’ve Got Peace Like a River” and “He’s Got the Whole World in His Hands” was one of those holy moments. Her faith is so strong, and she teaches us daily. She fell asleep on the cart, and now we’re heading to bed. 

 

Thank you for praying and for caring—we are so, so grateful to be home in our own beds tonight. 

Photo: Avry had fun decorating her very own ribbon today in clinic that will be displayed. (It’s GO GOLD in September for pediatric cancer awareness)