June 27 weekly update
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June 27
We’ve been home a week now — the longest stretch we’ve been home since March 7.
We’ve been home a week now — the longest stretch we’ve been home since March 7.
I’ll be honest… I started the week wondering, how is this even going to work?
We quickly learned that for Avry, being home but not of us being here is really hard. Trace is in Pennsylvania, Jake had to head to the Valley for work, and her little heart wasn’t just sad — it was scared. No matter how many times we FaceTimed Daddy and Trace, no matter how much I reassured her… every few minutes she’d look at me with tear-filled eyes and ask, “You very promise they’re coming back?”
Her life has been so upside down, and I know her trust feels fragile at times. The truth is, I haven’t always been able to protect her from the scary tests, painful shots, or traumatic exams. And even home doesn’t quite feel like home these days — instead of toys to clean up, the mess is mostly medical supplies, feedings, flushes, and medicine.
But one thing remains — our togetherness anchors her. It gives her peace. And I love that.
Meanwhile, Trace called me nine times the other morning while I was still in bed. I finally texted him, “Are you okay? I can’t answer or I’ll wake up Avry!” But he kept calling, so I finally answered…
“What’s up, Mom?”
Clearly… just bored. 😂
Jake called later and asked how many times Trace had called me. He said, “That boy is homesick.” Honestly, I was a little relieved — I wondered if he’d miss us at all with how excited he was to go!
He’s having a blast with cousins and on the farm, though. He says, “Everyone is really nice to me,” and apparently… Pennsylvania is hotter than Texas. It’s that humidity. 😫
It’s been so beautiful this week. Hot but not humid. And evenings cool down a bit. It feels so unusual for June.
Like Jake said — he remembers 13 years ago someone told him on the way home from work they drove with their windows down because it had cooled off so nicely and was in the low 90s. Jake thought, “Crazy old man — you’re nuts.”
Jake said — “I’m the crazy man enjoying 93 degrees in the evening.”
Earlier last week, Id been talking Gena and told her she could come down — I’d be home alone with Avry and could use the company. Her schedule was packed, so I didn’t expect anything. Fast forward to Monday morning — she called and asked, “Can I fly in Tuesday morning?”
What?? Of course!! Always yes to that.
I’m so thankful she came. We spent hours at the park swinging Avry — there’s a handicap swing that’s perfect because I can keep her feedings hooked up, and she can swing with her hat and sunglasses, soaking up the sunshine. She sings while she swings, and will go for 30 to 45 minutes. I don’t even mind the heat — it’s 1000% worth it for the smiles and giggles.
We’ve also spent hours each day on the golf cart — the only way to pass the time outside without her wearing out. She loves it. Usually never wants to stop.
She’s still fighting naps hard. I know she needs that stamina reset to help her heal faster… but oh, she fights it. Some days, driving around is the only way she finally falls asleep.
She’s still so dependent. I can leave the room for a minute… but not for long. I’m her safe place. That’s why I’m always relieved when Jake comes home. Tonight I took my time showering and getting ready for bed — usually, it’s a quick rinse with a trail left behind.
I finally tackled some house projects this week that have bugged me for months — the overflowing toy closet, the untouched corner of the laundry room, the piles of medical supplies. Gena helped so much — honestly, I wouldn’t have done it without her. Even still, I’d find myself sitting on the couch with Avry while Gena did most of it.
We got all the children’s stepping stones placed in the flower bed, which made Avry’s day! She’s been painting more — her fine motor skills very intact.
Thursday was clinic day. It wasn’t easy — Avry never likes going in. Her port dressing change still takes five of us… it’s traumatic. If you watched, you’d probably say it was awful. But compared to three months ago? She handles it very well.
She was so happy to see Shelby, our transplant nurse, and we caught up with Katelyn, the NP. Lots of preliminary transplant testing is being scheduled for a month from now — right after round 5. Ugh. Doesn’t sound fun, so I’m not thinking about that yet. But it hangs over us… this awareness that she’s probably the best she’s going to feel for a while.
As much as I soak in her smiles, giggles, belly laughs, her climbing the couch or walking around… I know the harder days are coming again. It’s this constant roller coaster — the glimpses of our girl… until the horror part of the story swoops in.
“I will fear no evil, for You are with me.”
We walked over to 3 East after clinic — Brooke, Hailey, Sam, Dr. Sasha — they all welcomed us with so much love. Avry had so much to tell them. Gena saw it firsthand and told me later, “Rose, they love her. Like… really love her. I see why you say this place is special.”
She was melted into a puddle seeing the outpouring of love for our girl… and I was overwhelmed all over again by God’s goodness — placing us with these incredible nurses and doctors.
This week, I’ve noticed Avry’s faith shining through again — asking to pray for specific things, always including her doctors, nurses, and the clinic… right after Daddy and Trace.
She’s doing so well. Jake reminded me the other day, “To think — a week ago, they had her open, touching her spine… and now look at her.” Kids heal fast — it’s incredible. She’s stronger and more agile than she’s been in months. It’s been over a month since her last chemo, and she’s feeling good. She even crawled up the steps!
We’re still working on her balance. She’s tolerating her feeds at full rate, not getting sick. Eating? Just a few bites here and there — but I’m pushing fluids through her tubie all day to keep her hydrated.
We’ve also been super careful how we pick her up. I can’t help but smile when she sits up all by herself now — she knows how to do it without hurting her incision.
She’ll still cry if it gets bumped, or if we pick her up wrong… I love how she’s so quick to ask us to pray. Last week, she sobbed in her little Texas accent, “I keep prayin’, but it’s not workin’.”
It shattered me… but her resilience never ceases to amaze me.
Oh — and I have to tell you this Costco story…
Every time we go out, people either stare like they’ve witnessed a phenomenon or smile with so much empathy. Sometimes I feel like I’m wearing a scarlet letter on my forehead.
We were in the checkout line, and this older lady kept inching her way toward us. I ignored her — hoping for optimal results. But she kept shuffling closer until she was finally next to Avry, staring and shaking her head. I thought, “Oh Lord, this isn’t going to end well.”
Sure enough, the lady reached out and touched Avry’s head.
Faster than you can blink, Avry whipped around, slapped her hand away, and growled, “Nooo. You’re mean.”
I said nothing.
I thought, “Lady, you asked for it.”
All the while dying inside trying not to laugh. 😂😂
Pre-cancer, Avry would’ve said, “Move, you’re in my bubble.” But something about being touched on her bald head flips a switch in her. And honestly… I would too! Kind of like when a tall person pats me on the head 🙈
Then later that week, Crys and I were walking from the Healing Garden back to our room when we passed a mom with her four kids coming the other way. That mom was staring so hard… she ran the little kid in the stroller smack into the wall!!
Crys and I got in the elevator and I don’t think the elevator has ever heard such laughter. We could not stop. Like… whatever??!! Clearly not enough adults got smacked into reality as a child and told to quit staring. 🙈😂
That’s when Crys joked that I should just wear a shirt that says, “Yes, she has cancer,” with a QR code on the back that says, “Would you like to donate?”
We’ve had mornings where she wakes up with a sleepy smile and says, “Good morning.” Mornings swinging in her new “Make-A-Wish” bed swing on the back porch. We’ve had fun painting and making smoothies — little hints of normal in the middle of all the hard.
When Jake came home, her little world felt almost complete. Nothing brings her peace like cuddling up between Mom and Dad.
She had called him this week and asked if they could go shopping at Walmart — she couldn’t wait! So after work, off they went. She came home glowing — new stepping stones to paint and a rainbow dress. She proudly told me how much fun they had.
This week has been good — not easy — but good.
Having Gena here was a blessing to all of us. I know that was a sacrifice for her family, tho I’m so grateful.
Saturday night Avry woke up and she remembered there were fireworks in town and she really wanted to go. We knew we’d probably miss them but jumped on the golf cart and headed to town. We found a prime spot and it was so much fun to hear her exclaim over all the pretty colors in the sky. She called Trace and so excitedly told him about it!
She doesn’t play a lot- we did playdough and side walk chalk but it’s very short lived. She is still painting and I wonder if she’ll ever get tired of it! Stickers and markers are still pretty fun too. Tonight we made her almost 4 years old- handprint out of salt dough.
Saturday night Avry woke up and she remembered there were fireworks in town and she really wanted to go. We knew we’d probably miss them but jumped on the golf cart and headed to town. We found a prime spot and it was so much fun to hear her exclaim over all the pretty colors in the sky. She called Trace and so excitedly told him about it!
She doesn’t play a lot- we did playdough and side walk chalk but it’s very short lived. She is still painting and I wonder if she’ll ever get tired of it! Stickers and markers are still pretty fun too. Tonight we made her almost 4 years old- handprint out of salt dough.
Next week looks busy — a little chaotic — with a clinic day to start off- with her hearing tests. Then “shift change,” Trace coming home, another long clinic day, our anniversary 🤔… and gearing up to head back to the hospital for most of July. (I am looking forward to Avry and I having a day or so of rest while we’re by ourselves the beginning of the week.
One day at a time. But also HOW is this the end of June?? I’m still stuck in late February…
I keep thinking about round 5 (starting next week)- and that will
Conclude the first trimester! 🙌 4.5 months into treatment. I told Jake- everything has gone so well that I’m
Expecting transplant to be a breeze. Ok not a breeze. There will be parts of it that I can’t even think about but the part I’m talking about- is everything has gone better than her team has expected so far and I just think that’s how transplant is going to go. We’re praying and believing that way! I’m so ready to just DO IT✅
I’m so grateful for this time at home. Every minute with her is a gift — and I want to treasure them all… even the moments I wouldn’t wish on anyone.
We’re also keeping the ringing of the bell in sight at the end of this- and the party to follow, where we’ll celebrate the ending of daily and weekly treatments and all the endings and beginnings that come with that chapter.
Avry and I often dream about it as we walk by the venue here in our neighborhood. It’s the thing we hold onto — and what better way to celebrate than with the people who’ve walked this journey beside us. You mean a lot to us. 💝
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