Day 1 Post Transplant – September 30

This morning I woke up instantly alert to find three nurses and a doctor gathered around Avry’s bed, working steadily in hushed tones. My heart dropped—what did I miss? I blinked wildly, straining to see the numbers recording her vital signs.

In the night she spiked a fever and her oxygen levels were dropping. Her fluid balance is negative, meaning she’s dehydrated after so much diarrhea. And because some of her fluids are outside the vascular system. None of this is surprising given all her body is going through, but it’s still sobering to watch.

NP Jason was right there—hands on, calm, and present. He doesn’t just direct; he stands shoulder-to-shoulder with the nurses, offering support and reassurance. He stayed with us, explaining, monitoring, making sure Avry was stable.

She’s not outside the rejection or reaction window, so every shift feels weighty. She needs extra support, and we need steady hands, quick eyes, and calm hearts. This morning, we had all of that here in our room.

She’s getting saline on the pump to see if we can’t raise her blood pressure.

Fluid balance is of utmost importance. We do daily weights twice a day, and record all input and output. This is just one of the many very hands-on daily tasks.

Sunday night we were fluid positive, which is an even more severe issue that results in very scary stuff. In a few hours though, Avry’s vitals were stable!

Jake and I have been discussing at length radiation and how to make all of this work. It would be very easy for both of us to be discouraged.  I know I can handle radiation by myself, but I can’t promise I’ll be OK afterwards. That puts me at a decision—one I wish with all my heart I did not have to make.

I would rather Jake go work two to three days a week now and try to handle the hospital post-transplant with Avry alone, than do radiation in another city all by myself.

It’s choosing between hard and hard. Everything in me screams, “I can’t do it.” But what choice do I have?
This is when I want to feel a little bit salty and compare my life with yours— comparison would love to jump in the drivers seat and take me for a ride. And if I wanted to feel exceedingly crappy and angry, I would jump in and take an adventure. 

But instead, I’m choosing to dig deeper than ever before and do what mothers of warriors do—the humanly impossible—because I’m trusting God to give me supernatural strength.

So Jake and I have decided that he will go to work three days a week—jobs where he isn’t in contact with people—so that he is allowed back in here with us for nights.

Jake left this morning at 6 AM for his job just when the vomiting and diarrhea began. Ugh. 

Post high-dose chemo is designed for teamwork, to keep clear lines of contamination. I honestly don’t hate doing it—like I said yesterday, I even “enjoy” the challenge. The hard part is when you haven’t slept more than four hours over the past five nights. I sat beside Avry, holding her emesis bag, dozing off in between.

“We CAN do hard things.”
I called the nurses to come and change all her tubes because there was no way I could sanitize them after such a horrific episode.

I gave her another sponge bath, stripped the bed linens, and got her sitting in the chair while I sanitized her bed and the room. I scrubbed all her clothes and they’re ready to go to the washer once shift change is completed.

Avry was awake and not ready to go back to sleep right away.


Jake’s not here to get us both coffee, so I DoorDashed breakfast  and placed an order from Target. I’m going to try a wipe warmer.

We use a special solution to disinfect Avry’s skin every time we change her. The solution has a cooling effect and often leaves her shivering for an hour afterwards. There has got to be a better way!
So I’m going to put the wipes inside the solution, inside of a biohazard bag, inside of the wipes warmer.

The nurses were so impressed!

This is why it takes mothers with experience to be part of the design of the future—to ease even the tiniest piece of the journey for those coming behind. This is just one of the many comforts we get to offer her- it’s something we CAN do and that feels so good! 



October 4 – Saturday Update

Jake went to sleep about 10 PM. I was just about dozing off at 10:30 when I noticed Avry’s vitals trending low. I kept watching her oxygen drop and wondered why no one was coming in the room. I watched for another hour, and about that time the nurse popped in. We started her on oxygen immediately. I watched her body relax and her pained expression fade.

At 12:30 I joined Jake on the couch when the nurse assured me she’d monitor Avry so I could sleep. At 2:00, Jake woke me up to help him. They were coming in to do an X-ray of her chest.

She did so well! There was no hysteria. Just like yesterday when we went down for that CT scan—she was unbelievably calm. We talked everything through, and she held my hands tightly. She is pure amazing. It’s taken 7 long months of many tears for both of us - to get here.


After the X-ray, they gave her Lasix to balance her fluids. Lasix during the night is not fun! She got a dose late in the afternoon and all we’ve been doing since then is bed baths, stripping the bed, and sanitizing.

Then it hit with a vengeance—diarrhea and vomiting back-to-back, right after we had finished re-sanitizing everything. Poor girlie! The last time she vomited, her tube came up with it. She was so distressed.

“Mama, I tried so hard to hold it down but I made a mistake.”

How can such a tiny human be so heartbreakingly sweet while going through the unimaginable?

We got the room cleaned up, and Jake and I sat there a bit dazed. We were so tired.

They gave her a dose of steroids, and we watched her oxygen come back up to 95% and her heart rate climb to 178. Not great—but so much better than what we’ve seen all week.

Simone came in and asked when we wanted to put the feeding tube back in. We were NOT in the mood. But I wanted Jake to be there, so we decided to do it right away.

At first, Avry was hysterical. I was holding her, Jake and nurse Simone were trying to place the tube, and nurse Emily was getting her to take sips of water. That ended up in vomiting, so we took a break.

Then Avry asked if she could help. Yes!! She sat straight up and said:

“I got this, I got this.”

“Do you need help?” we asked.

“No, I got this.”

She was so dialed in, focused, steady, and confident. She said: “I can’t see my show.” But she sat up, threaded the tube up  her nose and down her throat so gently, so carefully, while taking sips of water and swallowing it down.

She did it without sedation, without even a sedative. She did it all by herself.

She is so incredibly brave and so strong. The nurses told us even teenagers don’t do that!

It’s as if she went from 3 to 5 overnight.

Our saying has always been, when met with opposition: “I can do hard things.” And Avry is walking that out in front of us day after day.

Dr. Mian and NP Kristina exclaimed that in their 30 years of pediatric oncology, they have never witnessed a child—or anyone—do that themselves. It is so uncomfortable and painful.

Kristina’s words:

“Avry is going to rule the world one day, and we are here for it!”


This morning, Dr. Mian said, “I think she’s stable.”

I think?? Well, that’s not exactly convincing or consoling. He went on to explain that we are in the trenches. (He knows I base my gauge on his level of confidence.)

Her liver enzymes are trending in a way that we don’t like to see. We’re giving steroids again today to knock out the fever she has again this morning. We’re also doing another chest X-ray to look at her lungs after needing oxygen.

The steroids give us false positives. They make it look like she is well and on the mend when in reality her organs are taking a hit.

Still—this morning she sat up and colored for an hour. We had only hoped for 30 minutes. We sat and talked about snow and sleigh rides and Christmas and hamsters and baby goats, and the little farm she’s planning on her Daddy  building her in our backyard! (Wouldn’t the HOA love that?!)
She has so many big little-girl dreams.

Jake needed to finish up a job this morning and is gone most of the day. Burke took Trace for the day to go have fun. No doubt he’ll come home tired but with his love tank full!

We are so appreciative of Ethan and Burke for scooping him up once in a while and spending one-on-one time with him—just letting him be a boy.

I used to tell my sisters:

“The best way to love me is to love my kids.”

And Ethan and Burke have done well at that. 💖



It’s been over a week of very little sleep, and I haven’t been taking care of myself properly—drinking enough or eating the right way. This is when you HAVE to force yourself to nourish your body when you’re not getting sleep, because the toll compounded by stress will take you down fast.

I struggle with low blood pressure and high cortisol after a week like this. And low blood pressure is no joke.

Avry is the epitome of sweet. She’s constantly checking in to make sure we’re okay—not exhausted, not tired of caring for her—and asking for the things she needs.

This is another reason we don’t allow negativity, or really anything but positivity, in this room. Only kindness, compassion, and gentleness.

So if you need to cry, stub your toe on purpose, or whine—we kick each other out until we can be sunshine again. Avry soaks up all the energy, and it’s got to be positive.- the ultimate healing energy! 


Tonight
I’m Ubering home for the night. I feel pretty awful leaving Jake behind, because nights here are really a two-person job. But my blood pressure is too low, and sleep is the only thing that will kick this flu-like feeling.

Please pray Jake has an uneventful night. 🙏

Heart talk
This week has been full
Of musings. There was once a pastor who told us about a situation- 
‘ we don’t have experience with this and so we just don’t know how to relate to it’ as if that was license  to wash his hands of showing up, offering empathy and compassion, and walking  along side.  My question was- if a handicap child was born into your family- would that also be your position?

Jesus did not avoid the broken- he sat with them. He didn’t pass by because he couldn’t relate. He leaned in with compassion, presence and love. Jesus didn’t shy away from the hurting—He drew near. He sat with the broken, the outcasts, the ones society avoided, because His love was never dependent on comfort or understanding. He didn’t pass them by out of fear he’d say the wrong thing  or worry of disconnect; He entered into their pain with presence, compassion, and truth. His example shows us that love doesn’t require us to have all the answers—it simply asks us to show up, to listen, and to sit with those who are hurting so they know they’re not alone.

But it makes me pause and ask… am I being the Good Samaritan, or am I the passerby? Am I more concerned with my own presentation of ‘being there’ than someone else’s pain? Do I step back because I don’t know how to relate—choosing distance to make myself comfortable? If so, I risk missing the very thing Jesus modeled- the very reason we are here in this earth: leaning into the uncomfortable with love like His. 

Because the greatest letdown isn’t when someone can’t fix your pain -it’s when they checkout the moment you get vulnerable. 

It's not about fixing It's not about rushing in with solutions or platitudes.
It's listening without judgment, honoring the  journey, and carrying the weight with them even in just for a little bit.

We often overthink compassion-afraid of
• saying the wrong thing or not having the perfect words- or shrug our shoulders, and think well- Someone else is better at it so we step back and do/ show nothing. 

Honoring another's journey isn't complicated; it's simply human.
Practicing empathy. Put on the moccasins of another. Ask yourself- what if that was me?? 
It's choosing to show up, to listen, to lean in with empathy rather than retreat in fear.
Because in the end, it's not polished answers that heal, but a willing heart-and that simple presence makes all the difference. 

Back when I shifted my business platform to Avry’s story, the sole reason for sharing was because I believe with my whole heart that God knows our potential and if we allow Him- He will bring things into your life to bring about that potential.  He created every single one of us for a very unique purpose. It’s easy to get comfortable in the space we occupy or let ourselves be poured into a mold, and float along like a leaf in the water. But 
“If the devil isn’t on your back, it’s because you’re not a threat to him.” And Because if we are not growing and becoming, then we are slowly dying. Through this heartbreaking journey, our family is looking for every opportunity to step forward, to rise higher, and to draw closer to Jesus. If youre only here to soak up the details, you’ll miss the opportunity for more. Our prayer is that Avry’s story would light a fire in your own heart to become a better version of yourself and to step more fully into the person God has created you to be. 

-our story for Gods glory