July 24, Thursday
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#miraclesforAvryJo
July 24, Day 1 MIBG/outpatient
Proverbs 24:10 (TPT)
Proverbs 24:10 (TPT)
“If you faint under pressure, you have need of courage.”
When the pressure rises—do I shrink back or rise up?
This verse doesn’t shame weakness—it invites growth.
A deeper kind of strength. A call to courage.
Today, I’m asking myself:
• Where am I being tempted to give up?
• What pressure in my life is revealing a need for God’s strength instead of my own?
• What would it look like to lean into grace—even here?
I’ll be honest: I didn’t want to do today. I’m tired of being strong and holding it together.
I wanted to stay in bed, pull the covers over my head, and “call in sick” for the rest of the month.
My knee, back, and foot throbbed through the night, and I finally slept from 3–6. I can handle pain. I can handle sleepless nights.But when it starts affecting my ability to care for Avry? That’s where it gets Me.
We got through today.
The clinic appointment was easy and breezy, thank God. Dr. Wells—our lead oncologist—and Avry actually have one thing in common: their love for chocolate milk. (Although these days, chemo has ruined the taste for her, and she doesn’t really care for it anymore.) Still, it’s their “thing.”
Every time he walks into the room, he pulls out his laptop and his little mouse, then awkwardly searches for a surface to make it work on. I chuckle every single time. So Avry and I picked out a mousepad for him—a picture of a milk carton shaking hands with a chocolate bar. He was delighted. Used it immediately. He’s just the kindest “grandpa” of a man, with a twinkle in his eye that makes you feel safe. I’m so thankful we have him on our team. Avry still doesn’t lovehim—she’s usually scared of him during appointments—but she sure talks about him a lot at home. That made our morning sweet.
Then we headed down to imaging. We were a good 30 minutes late—because Dr. Wells, bless him, is always running behind. He just loves chatting with all his patients. But by the time we got to imaging, it was chaos. Esther couldn’t come the whole way back with us, so I ended up wheeling myself—with Avry in my lap—through the halls, which was anything but ideal.
They did a few X-rays, (Esther could hear her from on the other end of the the floor) then took us into the holding room to administer the dye for tomorrow’s MIBG scan. Then came the CT scan.
Avry HATES CTs. She’s absolutely terrified of “going in the hole.” They strap her down tight to the table, and she panics. Full-body panic. Screaming. Thrashing. She’s completely claustrophobic, and every inch of that moment triggers her trauma. 😭
They needed images of her lungs and wanted her to be still and quiet. I wanted to laugh. You have got to be kidding. We’ve done this probably ten times in the past few months—she doesn’t “settle.” Unless she’s sedated, this is what you get. So… yeah. Thats not happening today. Hurry up and get your scans because she’s not going to quit- And the sooner the better. Pretty sure the entire floor heard her. 😭
Do I condone screaming? Of course not. But her fear is real. This child has been through absolute hell. There’s nothing I can say or do in that moment to fix it. And it’s in those exact moments I wish Jake was here. Not to fix it either. But just to be here. So I’m not holding all of it alone.
The nurse came and put the radioactive dye into Avry’s little body. We had about an hour and a half to wait before we could come back and check the placement. Avry wanted to go see her nurses on 3 East, so we obliged. She was tired, but it brought a little light to her day.
We still had time to kill, so we headed to the café. She just wanted to sleep. She was so exhausted. And I won’t even go into all the details of what the lunch hour entailed—it was a complete disaster just trying to get anywhere. Esther was juggling both of us, and I just wanted to curl up in a corner and disappear.
It felt like the stupidest day that ever existed. I’m supposed to be the caregiver of my child—and I’m lame. LAME. No pun intended. 🙈
We finally made it back to the holding room again. And mind you—my sister is pushing both me and Avry in the wheelchair. All over the hospital. I couldn’t even carry her myself. We get down there, and Avry’s begging to leave. She knows what’s coming.
The tech comes to get us, and once again, we go through those heavy doors—alone—because Esther can’t come with us. Somehow, I managed to lift Avry onto the table, strap her down, and do all the things. And she is absolutely hysterical again.
Where’s the husband???? God what is the point of all this torture??
I wanted to scream too.
Eventually, she stopped. The MRI room is dark—maybe a little less terrifying than the CT room. We got through it, and I somehow managed to lift her back into the wheelchair. I just keep thinking: what’s the worst that can happen? My foot finally breaks all the way? I have to stay off it until transplant? Well whoopty doo! Not like we’re already dealing with stage 4, high risk cancer— what’s a foot???
I don’t usually take painkillers, but today I am taking them around the clock. I’m not as shaky as I was yesterday with the pain less , but I still don’t trust myself to carry her.
We left and Avry was so happy. Almost asleep—her little eyes fluttering open with that big sleepy grin.
As soon as we got home, she was wide awake and ready to play. Me? I was done. Like “I need a hard cry and a week-long nap” kind of done.
But no- I restarted her feeds, gave all the afternoon meds, and we went to bed. I didn’t sleep much—but at least I got the foot propped and rewrapped. Later we went on a long golf cart ride and tried to prep ourselves for tomorrow. Early bedtime.
We will Leave for the hospital after 5 AM. Esther is planning to drop us off since she can’t go down with us anyway. And I’m determined—I’m walking. I’m going to push Avry in the stroller and pray I can get a shoe on in the morning. 🙏
Because if I can’t walk, I probably won’t be allowed to go back into the OR with her. And I have to go back with her. The sedation meds don’t touch her. She’s completely awake, going into the OR surrounded by strangers, and bright lights. She’s so traumatized. Then Her vitals are unstable in the OR, and she always wakes up so agitated, still
Unstable, ripping off her oxygen—it’s imperative I’m there.
Honestly? It feels like it’s going to take an act of Congress, all the stars aligning, and nothing short of a miracle to pull off tomorrow by myself.
Part of me wants to run away into the woods with her and disappear for the rest of our lives. Not like that’s in the cards today. 😳
So it’s time to “saddle up and buckle down.”
Everything in me is screaming, “I can’t do this!”
But I don’t have a choice.
So—we’re doing it.
Again.
Tonight I reread this mornings reading. Tomorrow I’m choosing to stay steady because I’ve got no other choice. She’s walking into a surgery tomorrow that’s going to tell us which way this pendulum is really swinging. No- I don’t want to do tomorrow because I’m physically weak, and exhausted and lack the energy I need to do all the physical things. Not to mention being strong for my girl! And being ready to hold whatever the prognosis be. I can’t physically or emotionally handle tomorrow. In any way. So there’s only one thing left to do- To let the pressure become my training ground, not my breaking point.
Because we are braver than we feel, And call on His grace to carry- because His grace really is sufficient and I’m choosing to walk in boldness tomorrow carrying that strength that only He can give.
I keep thinking of the scan- I saw the screen. I am anxiously waiting for the results. If not Friday night, we should know first thing Monday morning!
Please tag me tomorrow if you choose to wear your shirt for our brave warrior girl @romanianeyes90
If you’re needing shirt, the link is below.
Thank you for being here in the raw and the gritty.
Your messages have been like little lifelines—helping me crawl out from under the weight, one word at a time.
I don’t take it lightly. It means the world.
Prayer warriors;
Please Check out the prayer requests tomorrow.
Comments
John Neuenschwander
Jewel Nolt
It feels impossible, but you can do this with Gods help!😘
colleen hata
Gdimirova
ROSALYNN NOLT