July 23, 24 SCANS+SURGERY

Thursday, July 23

SCANS + SURGERY 

I woke up early this morning and couldn’t go back to sleep so I finally just got up and was met by the most beautiful pink sky. A God hug for sure. Felt like He painted it just for me to remind me that he’s got Avry Jo especially today. He’s got a plan and we can rest because he’s got all of us in the palm  of his hand.  I resisted the urge to run and wake Avry so she could see the pink sky. ‘ When God is in the details,  uncertainty doesn’t get the final say.’ 

Trace was spending the day with the neighbors and they were headed to the water so he was excited! It was the perfect distraction for him.  I packed his lunch and got all of Avry’s things set out to go and we were left by 7:30.  I noticed such a big difference in her as we prepared prepared to leave. There was very little anxiety.  She’s definitely been more clingy the last few days and there have been lots of questions and  a bit of

insecurity surrounding everyone’s plans and where we were at all times and what was going to happen next.

She snuggled down in her car seat and fell asleep on the way there! 

We headed down to imaging and 

I was reminded of all over again how incredibly grateful I am to have had her broviac catheter all this time! They needed to put in a temporary temporary site for the next two days. When I told her what we needed to do, she started wailing! 😭 ‘ this is the worst day ever and I hate these doctors and nurses because they’re so mean. I want to do this to them.’  The nurse was so kind and  compassionate. Avry wasn’t the only one with tears… 

The PICC team came down and they were so good.🙌  I had been sure to over hydrate her this morning because she has known to be a very hard stick even when they use the ultrasound machine to locate her veins. They did not have to dig around and they got the vein on the first try! Thank you, Jesus!  

After a few hours, They gave the Radioactive tracer  thro her new site and we were on our way to go find lunch.  Jake  always finds the best tacos! I asked him how he knows?? He said  he finds the most rinky-dink taco stand with a few homeless sitting nearby. That’s why he knows they’ll be good and he’s never failed me yet😋 (it’s also a great opportunity to serve.) Avry fell asleep so we stopped at target and I ran in to look at birthday gifts for her.  She didn’t ask for much- she wants a barn with animals and a real train 

With  tracks that hauls passengers 😍After the 3 hours, we headed back to the hospital. 

 The radioactive tracer was injected into her bloodstream. This tracer (called MIBG, with a tiny amount of radioactive iodine attached) travels through the blood and is naturally taken up by neuroblastoma cells because they have special transporters that absorb MIBG.

The waiting period gave the tracer time to circulate. Over the next few hours, it traveled throughout her body. Some of it was absorbed by tissues, some by any neuroblastoma cells if present, and the rest began to clear through her kidneys and bladder.

Avry begged to call

Trace. She was so

Sad he wasn’t along. She cried throughout the day ‘I miss Trace so bad.’

Once back down in imaging, we layed our terrified, screaming girl down on the imaging cot with Jake and I right beside her. She hates being strapped in to  the moving bed with her body ‘almost going in the hole’ and her head  just peeking out. 

The images checked the tracer’s distribution. The nuclear medicine team took a brief scan  to confirm the tracer had circulated and was being taken up in the expected places. They also checked for any technical issues, such as infiltration (where the tracer leaks outside the vein instead of entering the bloodstream properly). This helps ensure the main scan will produce reliable images.

The main MIBG scan is tomorrow. By tomorrow,  enough normal background activity has cleared while the tracer remained in any neuroblastoma cells. That makes it much easier to detect even small areas of disease.

A helpful way to picture it is this: Imagine pouring a glowing dye into a river. At first, the water is glowing everywhere. After some time, most of the glow washes away, but it remains attached to certain rocks along the riverbank. When you take the final picture, those rocks stand out clearly. The MIBG tracer works in a similar way—after time has passed, it highlights neuroblastoma cells much more clearly than immediately after the injection.

Avry begged to go to three E. and see Janessa. I was pretty sure she was already on maternity leave. We got to see some of Avrys nurses and she was so pleased to hand out invites to her bell ringing ceremony! Avry decided she wants her doctors and nurses and hospital staff at her ceremony and friends and family at her party so that is what we are planning.  Usually the nurses don’t get to go to the ceremony and I just think what a thankless job. They  see the family and the patient on their worst days- the least I can do is allow them to celebrate this milestone with us!! 

I think it’s safe to say they are

Just as excited as we are! 

We finally got home around 7pm. What a long  exhausting day of mostly waiting and trying to keep Avry calm and entertained.  Hospital tired as a special kind of tired.🙈 

She was so happy to be able to go home! We all were!  Jake and I were both ready to crash  and could have gone straight to bed but she  was ready to play! She was very distressed about the IV 

And didn’t use her hand which really limited her to doing much of anything.  She wondered  how she can color or play?! 

I forced myself to do some laundry to keep me busy. I put the laundry on the table and turned around and Avry started folding the little towels immediately! I was so surprised!

Avry couldn’t wait to see Trace! She hugged him so hard and wouldn’t let go of him and started sobbing. ‘Trace! I had the rough day! I had to get a needle and it hurt so bad.’ Holding out her arm to show him. ‘And then I had to go in a dark room in the hole.’ Trace just listened and held her till she was okay again. Then he proceeded to jump and somersault and till she was belly laughing. Trace is so good with her 💖 He fills such an important role. 

I was packing Avry Jo’s bag for tomorrow when she came in and asked what I was doing. I was creating little bags with supplies and directions for her NG tube replacement.  Avry stood there quietly and then finally asked ‘mom do I have to go to the OR tomorrow?’  In the most frightened tone. ‘Yes Avry. You and I are going to take a long nap tomorrow. They will change your tubie and do a lot of tests but you won’t feel anything.’  She burst into tears. 😭 ‘Do I have to get bandaids?’ Yes you will wake up with bandaids. ‘So then it will hurt very much and I hate the hospital bandaids, can I at least have pretty ones instead of ugly brown ones?!’ Thats why I’m packing your very own 🍒 cherry bandaids!  I held her and just let her cry. ‘Mom do you hate this too?’  Yes Avry, very much. ‘Hospital is just dumb and bandaids are dumb and all of it.’  She sobbed bitterly. 

Avry- you wouldn’t be running around and feeling so good if it wasn’t for the doctors and hospitals and Band-Aids. We need your hospital and your doctors and your bandaids!  I don’t like that you’re going through this right now and I hate seeing you in pain but I’m so grateful for your hospital and your doctors and your bandaids!! 

She hugged me tighter and asked for a golf cart ride.   

I finished packing and away we went! 

(I told Jake later - I really do hate all of this just like Avry said. He commented ‘ it is a necessary evil.’ 

She cried off and on all evening every time she thought  about tomorrow.  Usually the golf cart ride brings Smiles, but today she just cried. She brightened a little at the  pink sky. I held her and she cried herself to sleep on the ride.💔

Friday, July 24 

We were awake Bright and early again this morning. We left by 7:15 for the hospital.  I just appreciate all over again the team that Jake and I make and for the strong marriage foundation we had long before cancer.  None of this is easy but having a strong, supportive husband and daddy goes a long way!  We checked in and I was standing at the elevator waiting and  I turned around and he was gone. The security guard yelled laughing, ‘he ran around the corner.’ I knew exactly what he was doing… He ran down two flights of stairs with Avry to see if he would beat me on the elevator.  We’ve done this plenty of times! Of course he did! I waited for the elevator doors to open and there he and Avry were laughing!  If we’ve learned anything over the last year and a half is- your attitude/position is a choice!  Your circumstances don’t have to dominate your emotions.  Walking into this heavy day, knowing how hard this is going to be on Avry’s body, and the waiting takes forever and isn’t easy…. All while  being separated from her. It could be easy to walk into today with somber faces and weary souls and a dark and cloudy outlook. But that doesn’t serve anyone! Doesn’t mean it’s easy- it takes very strong mental and emotional muscles to choose differently than what is default  and be intentional!  This was only the beginning of choosing intentional JOY today! 

Once checked in, we were sitting in pre op waiting room and saw Dr Mitchell come down through. I nudged Jake and

Motioned -secretly we were both hoping that he would be the one doing Avry’s surgery today! 

Once back in the pre op ‘holding room’ everyone from the different teams needs to come by and get our consents.  It’s a big lineup today!  We’re looking at 6 to 7 hours of being under anesthesia❤️‍🩹 ugh that’s so long! 

CT

MIBG

ENT

ABR

Echo

NG replacement

Cath

Bone marrow aspiration

Bone marrow biopsy

The OR team was behind  schedule so that meant more time to wait. Avry was coloring and then talked to Trace. That lit her right up! He did his very best to make her laugh!  

They brought in a gown and the yellow hospital socks. No way was Avry gonna wear that! ‘ it’s such an ugly color! Mom I  don’t feel beautiful in it. I feel so ugly.’ 

I told her she can throw it over on the shelf and that made her laugh! So instead, I wrapped her up in a warm blanket.  When the OR Nurse came and I explained that she’ll have to put it on her once she gets back to the OR. The nurse laughed. She overheard the conversation yesterday about how Avry said that this was the worst day ever! She said I thought that was coming from an eight-year-old not a four-year-old and exclaimed how shockingly emotionally intelligent this little girl is. Well she’s been through a lot this year… 

We still waited for almost another 45 minutes. Avrys new favorite song is ‘this is the day that the Lord has made.’ Avry  and Jake used to sing that almost  every morning and she remembered it the other day and could say all the words!  Overall, Avry was in great spirits! So we played her song and she stood in the bed to sing.  You just can’t be sad when you sing and dance with Avry!  

Very soon Dr Scott Brandt (the lead anesthesiologist) came by we discussed pain meds, etc.  I was so happy to see he was on our case! He is most excellent.  I knew she would be in the best hands with him. He listens and takes care of Avry like she is his very own! 

They wheeled us right back to the CT first and I handed her over to Dr Brandt. He so gently scooped her up and layed her on the bed. He assured me he’d take good care of her.  The separation wasn’t without a hiccup, but I knew she wouldn’t remember it.  

It’s the most empty, feeling walking away from big heavy doors without your baby.  I’ve only ever done  38 times… but your heart never quite adjusts and I’m so grateful because it’s not ever supposed to. 

Jake and I just looked at each other like what do we do now??

Neither of us felt like going anywhere in the hospital.  At one time these hospital walls offered so much security and comfort and healing. Now they hold too many memories that make a person want to vomit..   we met up with one of the nurses in the hallway and she was on break so we went and sat down at the tables and chatted.  Neither of us were really hungry and especially not for hospital food. But also the very idea of DoorDash was gaggable. So we opted for the cafeteria. We both gagged down a few bites of our food. 

Time crept. I read about 50 messages to us. And they were so heartwarming! I didn’t nearly get through all of them-   so many people praying and thinking about us… as if you were sitting right there in the room next to us.  Your kindness and care goes further than what you could ever imagine…thank you!!!

One of the anesthesiologists called us to ask us about her NG to replacement. They did not have the same tube and wanted to make sure it was the correct one. Jake and I were so happy for the distraction and something that we could actually do so we ran over to the oncology unit and asked for the correct tube.  We got to see nurse Haleigh and that was so special! She helped with the haircut back in March after diagnosis!  

After a few more hours, Michelle the audiologist  came and talked to us with her brain stem, auditory response test. She had unbelievable news!  Avry’s hearing has improved!  Enough that we actually have to turn down her hearing aids. Which now makes so much sense why she has been saying they hurt her and why she’s not begging to wear them quite as much as she had been. 

OK but keep reading because I actually hesitated and write this in case you don’t hear what else I have to say.  This is not unusual to see a change when the child becomes just a little bit more stable. Michelle warned us to not get our hopes up that it will

stay this way. The chemo that destroyed her hearing stays in the body for years.  While this is exciting for right now she still has severe hearing loss. The hearing loss that she has directly affects a child Avry’s age -developmentally, as well as causes for severe  learning challenges. Which totally makes sense to me.  So many of the words she doesn’t close at the end and all of the silent consonants she cannot hear even with hearing  devices. 

I’m not gonna lie the last month I have wished that we knew sign language especially in public places where it is nearly impossible for her to understand what is going on. After church, she’s completely lost. In a grocery store or in a crowd- my heart just hurts for her as she is so confused and lost and shut down ❤️‍🩹That being said we’re not jumping into sign language right now as a family.  Our audiologist will connect us with the right people when the time is right. So while it is exciting to think that her hearing has improved, we know the cisplatin toxicity is what is still at play causing the instability.  Michelle teared up at the invitation to Avry’s bell ringing ceremony. We would not be standing today with our little girl  if it wouldn’t have been for these incredible doctors and nurses who came alongside with their life-saving efforts. 

Dr Mitchell was not on the schedule today. In fact when we went on three E., he was there so we assumed he was on the oncology floor this week. They informed us it would be Dr. Wells or Dr. Herod who would be performing her surgery.  At Avry’s 6 month scans, Dr. Mitchell performed the bone marrow part and we had such a different experience because he went in from the front hips instead of from the back.  It seemed to make such a difference in her recovery and pain. So we had always requested Dr. Mitchell to do it. Then there was one time where it seemed like it didn’t really make a difference because she was in so much pain.. what we realized is it was a combination of everything she was going through at the time. So maybe it didn’t actually make that much of a difference? 

Throughout the day they text us to let us know the progress in the OR. And we walk by the nurses station to watch for updates on the big screen as well. Finally, we got the message. We were waiting for all day.  

‘ please come to the nurses station so you can join your loved one.’  nothing makes us run faster than this!  Once inside the PACU, Dr Brandt was there waiting for us with the PACU Nurse. She was still sleeping.  I knew that Dr Brandt knew how important it was to both Avry and myself that I’d be there before she wakes up. He said she opened her eyes a few times, but was still very sleepy. I put my hand on her hand and she peeped immediately and squeezed my hand tight and went back to sleep. We couldn’t believe it!!  they asked me if I wanted to get in the bed with her, but she was so comfortable and I did not want to move her. She would not let go of my hand, even while sleeping!  She was so peaceful😭 and Dr Brandt himself replaced her Ng and did it precisely how I’d asked!! He even went above and beyond what I asked… He deserves a medal!  And Dr Mitchell came down just for us and performed the surgery part on Avry Jo!!! So

Many wins!! 😭 Thank you Jesus!

She stayed sleeping for about another 2 hours , not once letting go of my hand. And when I tried to let go, she squeezed tighter!  We really did find the perfect cocktail… it’s hard not to beat myself up over the past year and a half how horribly traumatic it was and how very different it could have been… but we did the best we could with what we knew at the time and I’m just so grateful that we’re finally at this place. 

Once Avry finally woke up, she was so distressed that they didn’t take out her IV while she was sleeping. Laura, the discharge nurse was incredible! Turns out she lives here in Bastrop too. She was an older lady, and she said that they will wheel her out in a coffin one day/ that she’s never quitting. She was so gentle and just full of all kinds of interesting tips. Those are pretty big Bandages  on Avry’s little arm. And it usually hurts so much to pull it off and take it out but Laura did it with so much skill, 40+ years of doing it…

She brought Avry an orange popsicle and turned a cup into a cute little saucer for Avry’s popsicle.  

When I was getting Avry dressed. she noticed her cherry Band-Aids on her hips and was full of questions. She had ZERO pain! The only thing she really complained about was her throat- from having being intubated that long, her throat was very dry and sore. Her forehead and chin were sticky from the tape used to hold her mask in place. This was exceedingly abundantly more than we asked for!! 😭🙌

She begged to go to three E. again. She wasn’t completely awake and stared off into space a bit. We were so ready to go home, but could not deny her this wish. She was so proud to have been able to see Sam and Haleigh!  By the time we were exiting the hospital, she was crying because she was so hungry but nothing sounded good to her. So we headed home. She promptly  fell asleep. It was  bed time. 

Once home she was so excited to see Trace!! She proudly  showed him her arm without an IV and just a bandaid and told him about her surgery on her hips and now she has Band-Aids there… 

This girl is so determined! She wanted to play store with Trace and Trace’s friend. She wanted to be the waitress and made a grand happy mess! Jake and I just watched in surprise and almost horror. I felt like we shouldn’t let her do this. But yet there was no keeping her on the couch.  I knew when the pain would get too much she would go lay down. It didn’t take long till she was doubling over and crying in pain. She tried to keep playing, but I finally just took her to bed.

So we headed to bed. A family of 4! God knows we could use several million dollars to pay off this hospital debt- but you could not pay me $lA million dollars to stay the night in the hospital!  🙉

The night was long. She had a very hard time getting comfortable. As the fentanyl wore off, the pain from surgery could be felt.  I gave her everything I could possibly give her and she was still in pain.  A little bit of pain is what keeps her from running around and allows for healing. But there’s gotta be more of a balance than all of this!!!  it made us more keenly aware of how very good she has been feeling!!! it’s been a while since she has been flat out. 

Saturday, July 25

Avry Jo woke up crying. She asked how she is going to play today if she hurts so much?!  I did not want to have to call in because I knew they would say come in. And I know if we can manage it from home she’s going to  feel better and she’s going to heal faster! By midmorning, I felt like we had the pain under control again- or at least it was tolerable. 

We sat on the couch all morning and played and played! Tea parties and birthday parties and puzzles and coloring and watched Little House on the Prairie. 

She was begging to go on a golf cart ride, but I knew that the bumps would jar her and send her into Pain she wasn’t expecting.  I finally gave in- and the ride didn’t last.  But she got a little sunshine and fresh HOT air.

Sunday July 26 

This morning, I can tell she is turning a corner! She’s feeling so much better. She’s not running around and is very content to sit beside me on the couch to play or snuggle up close while I read to her. 

It’s a very quiet day here at home. Very relaxing. Exactly what we need before our big week! 

I whipped up a batch of biscuits and sausage  gravy, and Avry was so excited! Usually we have cinnamon rolls on Sunday morning, but instead we opted for brunch and she was so excited to help me with the biscuits.  She sat at the barstool and happily ‘helped.’ 

We’re not panicking about tomorrow, but we’re not really thinking about it too much either.

It’s more like a cloudy haze.

While Avry was in surgery, I somehow fell going up the stairs. Three different times. Jake just looked at me, completely bewildered. “How do you fall going up the stairs?” he made sure we took the elevator every time after that! 

He finally said, “This is exactly why I never leave you alone when Avry is in surgery for hours. I’m afraid you’d walk out into traffic.”

As strange as that sounds, there actually was a mama whose child was in the operating room for hours, and she unknowingly started walking into traffic. Her husband caught her just in time.

I think something very unique happens in a mother’s brain when she’s separated from her child like that.

After enough time passes, it’s almost as if your brain quietly goes offline—not because you’re imagining the worst, and not because you’re unaware. Your nervous system simply recognizes that you’re carrying more than a human heart was designed to hold. It narrows your world to the next breath, the next step, the next moment.

Your body keeps moving, but part of you is somewhere behind those operating room doors.

Tomorrow morning, we find out whether Avry is indeed cancer free.

Even typing those words feels vulnerable. Do we dare say them out loud?

We’re believing with everything in us that she is. But at the same time, our hearts can’t fully hold those words until we hear them spoken by her oncologist.

Being home over the past month has been such a gift. Slowly, we’ve been coming out of survival mode. After a year and a half of living in fight-or-flight, we’ve started feeling again—more deeply, more fully.

It’s not that we’ve never waited anxiously for scan results before.

It’s that every other time we waited, we knew treatment would continue regardless of what we heard. There was always another round of chemotherapy, another transplant, another surgery, another immunotherapy treatment. We were still actively fighting.

Now treatment is over.

If tomorrow brings the answer we’ve prayed for, we will step into a new chapter with immeasurable gratitude.

If it doesn’t… there are no standard treatments left. Her body has already endured everything modern medicine had to offer and has developed resistance to many of the drugs that once fought for her. 

(I know there will be plenty of people, offering us all kinds of alternative treatments available and that’s not something we’re looking at

Just now, so please hold off.) 

Those are the two realities we’re holding in our hands.

Hope… and surrender.

When Avry was first diagnosed, the only words that continually played through my mind were, “Only Jesus.”

Today, the words that keep returning are different:

“And if not… He is still good.”

Not because we’ve lost hope.

But because we’ve come to know the character of God more deeply than we knew it before. Our faith has never been that God is good only if He answers our prayers the way we hope. He is good because that is who He is.

Tomorrow morning we meet with our oncology team at 9:00 a.m. to hear the results. After that, Avry has an appointment to have her hearing aids adjusted.

If you would, please hold us close tomorrow.

Pray that we would be able to fully receive the richness and fullness of answered prayers if that’s what tomorrow brings.

And if it isn’t, pray that grace would carry us the way it has carried us every single day of this journey.

Whatever tomorrow holds, we trust the One who holds tomorrow.

Thank you for loving our family so well throughout this intense journey. Thank you for standing beside us, carrying us when we were weary, and reminding us that we were never alone.

Most of all, thank you for showing us Jesus. Your compassion, generosity, faithfulness, and prayers have been a tangible reflection of His love, and we will never forget it. 💖

-our story for God’s glory