JANUARY 30- FEBRUARY 14

Friday, January 30

(I know this update is so very long as it’s been two weeks in the writing, but I promise you’ll want to read to the very end. Thank you for being here)

We arrived at the clinic for Avry‘s 845 appointment with Dr. Wells and were downstairs in preop at 10:30.   They weren’t sure if we were going to be admitted after all due to  the winter storm and a delay in the immunotherapy drug.

We went through all the pre op consents and met her team of physicians and nurses that would care for her. They were starting out in nuclear medicine for her MIBG scan, then walking down to the OR. They predicted it to be a 5-6 hour sedation. 

The best part was meeting our anesthesiologist. She’s a mother
And Avry‘s comfort was of utmost importance to her.  When I explained that she reacts to the pre meds and that they do not work for her, she listened with her whole heart  . She was 100% open to what has worked for Avry in the past and pivoted and we came up with a plan that worked beautifully. When it was go time, we wheeled down the hall and then right outside of nuclear medicine, I jumped out of the bed and scooped her up and held her. As they injected  with the sedative, I sang her to sleep in my arms. It couldn’t have gone better!! The anesthesiologist took her from me, cradling her close and they were off.   Handing your child over to the doctors and surgeons is one of the hardest things to do. 
And they have all the power in the world to make it  miserable and traumatizing or as smooth  as handing over your child can be. 

It was almost 1 o’clock, so Jake and I headed to the cafeteria. That was when we found out that the drug had indeed arrived, and we would be admitted today! We set up Avry‘s room- Janessa had already been there! It was so precious to see  her warm welcome in the form of signs and special presents waiting for her in our very familiar room.

Jake fell asleep on the couch  in Avrys room and I was missing Avry so much. I went back downstairs to post op to wait for her- I just wanted to be as close as I could to her. Down in post op, I caught up with the PACU team while waiting. Everyone wanted to see ‘the princess/ pajama queen’ and  wanted to know how she’s doing. It’s hard to believe we were discharged three months ago post transplant!   I kept ‘refreshing’ the app watching her progress. Time creeps when you’re waiting like this. 

Jake headed back to Bastrop to take Trace to baseball tryouts. We didn’t think they were until next week, but he was selected pre-tryouts for a specific team. Jake did not want to leave but- this is very important too! It’s hard to believe that we are back in baseball season already.  But it’s one place Trace gets to be  cheered on and he needs something ‘that’s his’!
He has taken the backseat over the past year in every other circumstance and this is one thing that forces Jake and him to connect intentionally every single day, not to mention a really great way to channel all that energy.

I met with Michelle, the audiologist. She got new impressions since the first hearing pieces didn’t fit perfectly.  She reported that Avry has indeed lost more of her hearing, but informed me that a few months ago when she did the last test- it’s very unusual to have different  percentages of hearing loss. With neurotoxicity it’s usually the same in both ears so she fully expected her to even out. Avry now has access to 30% of conversation in both ears. This is not easy. It complicates our long-term treatment plan. However, there are options.It was a comfort to know that the audiologist expected this.   Obviously life comes before hearing.

Michelle walked back with me to PACU as soon as Avry came out of the OR. The wake up was so smooth- because I was able to sing her to sleep and she wasn’t at war with herself  while she was sleeping.  🙌thank you Jesus!  She wanted me to lay with her in her very groggy voice.  Michelle stayed with us and chatted. She is so wonderful to have on our team!   As soon as Avry was awake, she was begging to go to 3East to her own bed!

The night was uneventful as we started  chemo around 9 PM.  We were able to keep her pain managed post surgery. She was quite awake after her day of sleeping and we began crafting and crafted into the night. And went for wagon rides.

Saturday January 31
Avry woke up and was her smiley self! She got out of bed herself and wanted to go downstairs! I was absolutely shocked that she was not in pain!
She walked the whole way down to the second floor and out to the healing gardens to feed the fish! She has not done this since diagnosis!!  we walked past the sedation suite where ‘Anna lives’
And Avry posed  by her door for a picture. When we came in, she was pretty tired, but we managed to scrapbook for Janessa and Odessa. Since Avry is not allowed to see Odessa post transplant/ Janessa has a scrapbook where Avry and Odessa exchange the scrapbook with photos and letters.

The day was uneventful. Because we started the chemo at 9 PM for the first dose, and the drug is a timed administration -this is when it will start every night. Unfortunately, that means immunotherapy will proceed.

As I wrote in the last update, the immunotherapy  drug is new for us. They need to premed and start the continuous pain drip  2 hours pre antibody. 

This has been a difficult decision- during transplant, we used morphine as the main med. One of the side effects of morphine is itching. Avry had a very severe case of itching and it would drive her absolutely nuts to the point that she would scratch herself till she was bleeding. Mostly in her sleep.
Then we would give Narcan to offset the itching.  Unfortunately, Narcan is not compatible with a bunch of her other meds so then we would have to turn off the Narcan over over a period of time-and that’s when she would scratch herself raw. Being neutropenic (her white blood cells are depleted- thus disposing of her ability for her body to heal)
and having open sores is not an option as we do anything to minimize the risk of infection.  So we agreed to use fentanyl. It’s 40 times stronger than morphine and is micro dosed. They warned us that finding her sweet spot for pain management will be difficult. And it most certainly was. It was a night of our little girls body going from being ridged to visibly trembling in bed to screaming. For hours. Jake was about to be tired. It lasted from midnight till 5AM when she finally passed out  from pure exhaustion. Dr Mitchell was the attending and we were so grateful for his calm presence in the room. He stayed and assisted  the nurses Morgan and Lydia with the doseages. He overrode and gave several clinicians doses. They need to go up very very slowly as too much fentanyl will kill you. But the minutes felt like a lifetime of watching pure torture.  It took me right back to the first doses of immunotherapy.  I remember one day in particular when she was unstable and crying under my breath to Jake ‘WHY ARE WE PLAYING GOD???’
(it’s a mother’s instinct to fight for her child’s life at any cost. And it’s absolute torture to see your child in agony looking to you to relieve the pain and there’s nothing you can do except hold them. 💔💔💔 we couldn’t have asked for better nurses to get us Through the night.

Immunotherapy drug was administered over 10 hours.  Nikki was our nurse on Sunday. Trace stayed with Simons for the weekend.   It was almost noon and we were running fentanyl for the remaining 2 hours post immunotherapy drug. Avry was napping on and off. I’d just come back from a long walk and a chat with Ange over FaceTime.  I was standing at the end of the bed and Nikki and Jake and I were taking. I thought that time Avry began to stir and wake up.  Except she wasn’t really awake. Except her eyes were wide open. I smiled and said good morning to her and she didn’t respond. I continued to talk to her. Still no response.  I leaned close and Jake commented that she’s just waking up, but couldn’t actually see her face. Nikki  leaned in close  and I got right up in front of Avry’s face. I continued to talk to her and still no response. “What’s wrong with her???” There wasn’t just panic in my voice, I was decompensating fast inside. I slung off my ‘fuzzie’ and threw it across the room and I was getting hot and dizzy. I touched Under Avry‘s nose to make sure she was still breathing. Her eyes were glazed, and there was no facial expressions, no blinking, zero focus. Her stats were fine on the monitor so I began checking the monitors on her. Keeping calm on the outside and talking to her. ‘ something is so wrong with her get help now.!!!’ Nikki alerted the Dr and Charge STAT. She checked her pupils and Avry looked right at me. ‘Avry, who am I?’ This time she smiled but it was an unfamiliar look. ‘Avry do you know who I am?’ This time she shook her head no. 
“What is wrong with her???” I wanted to hit code blue button but she wasn’t coding!!!!
Kelsey, the Charge  Nurse came in and did a quick evaluation. Avry was scared- she don’t know anyone in the room. She looked so frightened. Kelsey asked to see her nails and Avry yelled ‘No!’
Well that was a relief!! All of this happened in micro seconds. I stepped back and left the nurses do their  thing- then I popped my
Face back in hoping her brain would reset- ‘Avry! Who am I?’ And she faintly smiled and I knew she recognized me! She was looking all around the room trying to make sense of what was going on.  The NP came and assessed her- she was ‘back’ but lethargic.
What just happened??? 
After about 15 , Avry asked me to hold her. 
Fentanyl is a very strong opioid that affects:
 • the brain’s alertness center
 • breathing drive
 • blood pressure
 • nervous system signaling. When a drip is running continuously, the brain adapts to a steady level of medication. If the drip suddenly stops, the nervous system can temporarily misfire while it recalibrates.
That sudden change can cause:
👉 transient unresponsiveness
👉 slowed breathing
👉 drop in blood pressure
👉 altered consciousness
👉 staring / non-reactive state
👉 muscle slackness or stiffness
👉 seizure-like appearance without an actual seizure
It can look like a stroke or silent seizure because the brain briefly isn’t processing normally — but it’s often a medication effect, not structural brain damage.
Think of it like:

The brain went offline for a moment while the chemistry shifted.
That’s why the team reacts fast: they’re watching oxygen, blood pressure, and brain responsiveness while the body re-stabilizes.

The body is incredibly adaptive. Once the medication level stabilized the brain resumed normal signaling and she woke back up. That return to baseline is a key sign that it wasn’t a stroke.

A stroke would not resolve in minutes.
A true seizure usually has a recovery phase (postictal confusion) that looks different from medication sedation.
It’s a transient medication-induced neurological suppression.
Scary? Yes.
Permanent injury? No!

Watching your child become unresponsive is one of the most primal fears a parent can experience. 💔My  nervous system stored that moment and it’s been replaying it in slow motion in my subconscious.🙈

We all remained calm. Both Nikki and I were NOT calm on the inside. She stayed very professional but her eyes and her face told me she was slipping.  And obviously so because all the nurses knew about it and came to see us throughout the day.

Death is not the worst thing that can happen.  Being trapped in a body that cannot respond.
A mind awake but unable to speak. A life reduced to survival without agency. A consciousness that feels caged. 💔

This was so coincidental, but just a previous week I sat with my colleagues and Dr Paul and we discussed this very thing. Somehow we think that if we talk about death, it just might kill us.  There’s so many places we don’t go on our mind because well what if death? Somehow death is always the worst case scenario. Dr Paul has a friend who fell out of a hunting stand, and became a paraplegic. Death is not the worst case scenario!  (that doesn’t mean we are laying around wishing for death!) And there were so many people who are walking around in their ‘carbon based earth suit’  fully alive, but are not living. They are …breathing, but not awake.
Existing, but not inhabiting their lives. Moving through routines, but disconnected from wonder, risk, intimacy, and truth.
They’ve made safety their highest god and in doing so traded aliveness for control.
And the irony is — the thing we’re trying so hard to avoid is the very thing that teaches us how to live! Death is not just an ending to fear; it’s a mirror. It asks: Are you here? Are you actually here? Or are you hiding in a padded version of life where nothing hurts but nothing burns bright either?

When you sit close enough to mortality — whether through illness, loss, or simply the courage to think about it — the trivial falls away. What remains is startlingly simple: love, presence, meaning, connection, God, breath. The people in front of you. The moment you’re standing in.
Some people never die until the day their body stops.
Others meet death once — in awareness — and finally begin to live. And that’s the paradox: talking about death doesn’t shrink life.
It stretches it.

It was a very stark reminder to me that when Avry is screaming because we are changing her dressings or so hysterical and out of control because of the apprehension of shots and Dr visits or ‘going in the hole’ of the CT machine—-I can with my whole mind and body and soul  appreciate the scream, appreciate the fight, appreciate the out of control-ness! It means she is very alive.

February 2- Monday,
Dr Cohn called Jake  to report that Avry has no evidence of disease. Her Currie score continues to be at ZERO! Dr  Wells left a message on my phone and Dr Caitlyn brought me the paperwork through tears. She again reminded me that the therapies that Avry has received over the past 11 months is the harshest treatment they give to kids with Cancer and every one that gets a score of ZERO is nothing short of a miracle!! I told her I never imagined without Avry, however getting to the post consolidation phase of inpatient treatment seemed unreachable and therefore I only could always focus on what’s right in front of us. How well I remember the day they gave us the 18 month schedule for her inpatient care- and I really couldn’t see past the first month! These scan results are our best case scenario and every time I look at the paperwork, I can’t help but get tears!

Only Jesus has parted our Red Sea and made a dry path for us to walk. I picture our prayer warriors like quiet angels beside us interceding for all
Of us when we didn’t have the strength to stand.

We wouldn’t still be walking without a faith that was firmly rooted before cancer — and without you. Your encouragement, your prayers, your kindness… you’ve held up our arms in this battle.

We are still moving forward because we are carried. Thank you for walking with us. 🤍

February 4, Wednesday
they discharged us. Why is it on days that they discharge us- it seems like she’s often pain or she’s so tired or just doesn’t feel well?? was it premature? I couldn’t say it was because this was supposed to be so much easier than anything else we’ve been through up until this point. The pain was somewhat better, but I also knew that it would get worse as we began giving her the GSF  shots to stimulate the white blood cells, as that always gives her extreme bone pain. She was still having severe diarrhea, but they had warned us about this and we had actually started medication pre-round and they assured us it would clear up in a day or two. If nothing else, I had the reassurance that I would go back in on Friday and that was my security.

Gena came on Wednesday! We had this planned for a while now that she would come while Jake and Trace headed to Utah for a few days with  others from the SHB for a father/son weekend. Jake and Trace were looking forward to this for a few months and I really wanted them to go and have some quality time together with friends. Little did we know that we would just be getting home from the hospital- and going right back in.

We got home and Avry was so tired and had pain. Aaron was there for the night as well and the guys left around 3:00 AM. We did not get any sleep. Avry had explosive diarrhea every hour and up to three times an hour. 

February 5, Thursday
-I was a zombie. Five nights of being up every hour- it was fast catching up to me.  We spent the day sleeping. We did go out on the golf cart for a ride, but that really wore her out. By the afternoon, I was really concerned about her because she was lethargic and in so much pain so I called into the clinic. I really didn’t want to  have to go in today unless they really felt like it was emergency so we decided on switching meds and we agreed I would go in first thing in the morning as scheduled. It was another very long night and I was so relieved to go to the clinic. Caitlin, the nurse practitioner, took one look at her and said we need to bring her into the hospital. They gave her 3 L of fluids and it took over 6 hours for her to pee😢 how in the world was this child that dehydrated when I was giving her fluids at home?? (in hindsight, I should have pushed harder-I felt like she was dehydrated the entire time we were in the hospital because of the extreme diarrhea). By Friday night, Avry had finally perked up and she was sitting up. They changed the meds and she finally got a few hours of relief from the diarrhea. The chemo name is Irinotecan (There’s a reason they call it I-run-to-the-can) it’s in the same family as Topotecan (chemo they used for the first three rounds). Irinotecan is mostly used for relapse patients, and post consolidation phase. It’s not as strong as the chemos that were used during transplant, but it targets the metastatic, advanced cancers. It is AWFUL.

Saturday she was bright eyed again and much more herself. I don’t think I realized how low she was simply because I was so beyond exhausted. I was so glad that Gena was here because she brought in things that we needed from home since we were not planning to stay. She also brought us lots of crafts because Avry was so bored. 

There are so few people that Avry trusts anymore, but Gena is the one of them. They share something very special-they both were hearing aids and Gena has spent a lot of time in the hospital with her son. Avry has become such an empath and the idea of anyone hurting or being in the hospital or having to take medicine by mouth-she often just bursts into tears for them. 

Avry had gone most of the day Saturday without diarrhea and we were so excited at the idea of going home on Sunday! Sunday morning, she had two more massive blow outs and I wondered how much the medicine was still working-the doctor said as long as she is drinking we are allowed to go home. My gut told me it was the wrong thing to do and that we need to stay, but also, I am not the adult in this situation and I fully own it! If the doctor as much as me suggests home, you may as well have told the kid that they’re going to the Candy store. They assured me we could come to the clinic on Tues  if that made me feel better about going home and so  we were headed home!!

We were only home a few hours when  diarrhea started up with a vengeance. A few every hour. I asked Charity if she could take care of delegating the school run because there’s no way I’m taking this child anywhere!   Gena left on Sunday and Jake and Trace arrived home by evening.

Monday, February 9
Andy and Dory Baer were staying at Paul’s as they were up from Mexico to renew visas. Andy texted Jake on Sunday and asked if they could come see us on Monday. I was a little bit worried because Avry seemed so fragile and I was not sure how it would go. Avry woke up bright and happy on Monday morning and seemed to have a lot less pain. (we had given her the last of the shots  so I knew she should be feeling better.
Gena did so well! I would not trust anyone else other than Jake or medical professional to give my daughter these shots except for the fact that Gena has to do it on a regular basis with her son. I feel so incredibly blessed to have a friend like Gena!) so we told Andy’s to bring their family and come! It’s been 14 years since we connected and it was great to have them!

I couldn’t shake this feeling with Avry. They called from the clinic and asked if we still wanted to come in for an appointment tomorrow? They made sure to say that they’re not worried about Avry, but this is for mom’s comfort. Well, that doesn’t make me spiral at all and wonder if I’m crazy?! by Monday night, Avry was so dark under the eyes and  sunken in-I had given her her full fluid needs but I felt like it wasn’t enough for the amount of diarrhea, she was still having. She was clearly losing weight. Jake had other commitments and I am so sick and tired of asking everyone to help us. So I braved the hour drive to the clinic by myself with Avry. I don’t mind the drive. In fact, I love that part. But the part that is so hard is the nausea and vomiting and having to pull aside on crazy interstate
For outfit changes when cars are racing past you at 85 mph. I’ve done it before- but I would not recommend it!  The whole way and I just kept asking God to stop the bowels of my child for just one hour and to please give us a parking spot so I don’t have to park on the sixth floor! God came through!!! we got a parking spot on the first floor and  let me tell you that never happens! As soon as we entered the clinic, Avry had a massive blowout—-thank you Jesus!!

We weren’t in the room very long at all until Dr. Wells came in and said we need to admit her. AGAIN. Her fluid balance was off and one look at her told him that she was very dehydrated again. He said we have to get this diarrhea Stopped today. That he has never seen such long side effects like this.   (sometimes I just want to be wrong. Last night I laid in bed and I really wrestled with. Am I just being over paranoid?? But my intuition has never been wrong when it comes to Avry’s Care. And that is  simply because God and I have teamed up for this whole thing we call life-(that’s not any self-promotion.)
But sometimes I just want tombe wrong!!! but again I could not shake the feeling that I had as I fell asleep last night as I couldn’t unsee  the dark circles under her eyes.)  so it’s time that I questioned Dr. Wells. I thought this post consolidation phase is supposed to be easy. I also feel like the doctors in the clinic are not communicating effectively with the doctors impatient because why in the world recent  home? The doctors inpatient strictly treating the dehydration with very little emphasis on the diarrhea. And what does this mean for us because we’re supposed to come back inpatient in 2 1/2 weeks for the next round.
I expressed my very uneasy feeling that I’ve been carrying around for the last week- I pre-warned him that I’m sleep deprived that I’m not losing my mind, but I am gonna cry. If she can’t tolerate this chemo-is there an alternative? And why can she not tolerate this chemo? What is going on in her digestive tract?
If we cannot continue treatment- what is the percentage of relapse? We put this baby girl through 11 months of hell -and I’m not gonna prematurely. Yes, she is doing amazingly well! Only to relapse now because her body can’t handle any more chemo?? You’ve got to be kidding! (this was something they warned us about early on that sometimes after transplant, their body can’t handle anymore treatments)

Dr. Wells was so steady and so calm and so kind. He validated every single one of my concerns. These are his concerns too.

Dr. Wells went out to consult the other oncologists.

Dr Caitlyn came in. ‘ your  rare and beautiful flower of a daughter continuing to demand us to stay on our toes and be in that fine print of the 1% .’ It wouldn’t be our Avry Jo if she followed protocol and make it ‘easy!’  she explained that there are a lot of hospitals that don’t even do the post consolidation phase but their relapse rates are a lot higher than what this hospitals are. And honestly, that’s what’s given me so much comfort knowing that this hospital dots their I-s  and crosses their T-s and goes above and beyond.

The first thing they did was quarantined us just in case there was some kind of bacterial infection or blood infection. They also began treating as if it were both. It would take approximately four days to get a test results back and because the diarrhea has been going on for so long already, they didn’t feel like they have any time to mess around.   They also got infectious disease involved as well as the G.I. team.
I went over the same jargon half a dozen times to all the different teams and explained exactly which meds at what dosages I was using what worked and what hasn’t worked.  At this point, I really should just become a full oncologist instead of just  a momcologist.

Avry feels really good! I cannot believe she doesn’t even have any skin breakdown (but also in 11 months I have learned what works and I have all my special tinctures  and have perfected that aspect). So it’s a waiting game. We are not allowed out of the room so she’s pretty sad about that. If she can’t go out of the room, she doesn’t even want to get out of bed.  I DoorDashed a bunch more crafts and she has been painting nonstop.   Jordana went to the house and gathered some things for Avry and I and brought them into the hospital since Jake is out of town working. As soon as he learned that we are back in the hospital he turned around and started for Home. Trace is with Simons- which is the best place for him to land! There’s boys and Charity is excellent at keeping him busy. She’s packing Traces lunch and making sure he has a ride to and from school every day.

Jake hasn’t worked for the past 2 weeks and feels the pressure to get back to work. I’m OK with staying with Avry in the hospital the entire time but the days can get really long and if I’m up most of the night- eventually I feel like I’m going to lose it.  Avry and I just about go bonkers if they don’t come in to see us in the evenings. And Trace does best in his own bed every night- it’s been very unsettling for him but if him and Jake can go to bed together and have breakfast in the morning before school, it really does seem to set him off to a good start for  the day. 

Jake had work scheduled for Tuesday and I called him and said he needs to come and give me a break before I break.  He canceled his workday and came in by noon. I took the laundry home because this washer is broken in here (Avry is going through 6 to 8 pairs of pajamas a day). I went home and I crawled into my own bed!! Jake called Charity and asked to keep Trace until 5:30 so I could sleep!  For the first time in two weeks, I woke up without a headache, and I actually felt rested! I really just wanted to stay in bed for another week. But I knew Trace was coming home soon, so I got up and did the stinky dishes in the sink, scrub a bunch of Avry’s clothes, wiped down the kitchen as to get the stinky smell out of the house. Charity brought Trace and stayed and we chatted, which was so good for my heart! She also brought really delicious hot home-cooked food (which is so incredibly comforting when you have been eating trash from
A vending machine.)  Trace I ran to town and washed our  dirty vehicle. (obviously Meg is not here to keep after all of the details anymore and is shows🙈)
We ran to Hobby lobby so I could get a poster for Avry’s room that she wanted to decorate. 

Thursday morning I woke up in my own bed after such a good night of sleep. It’s amazing how much clearer you can think  when you sleep more than two hours straight! I forgot how good it is to feel good when you wake up! I really just wanted to stay in bed. I imagined being able to stay in bed for a whole week and while that sounds deliciously wonderful— I love having kids and a busy life and when I’m old I can lay in bed for days if I want to, and so  right now while it feels like the thing I really really want and need, I so badly want to embrace this season because we could be living without our little girl, and so I want to find so much gratitude in these hard exhausting days  that take away my appetite and leave me energy less and feeling like I could vomit all day, every day. 

I got up early and finished the laundry and then ran upstairs with my cup of coffee, and Trace joined me on the couch. Sometimes I feel like I don’t have the emotional energy to listen to all his ideas and theories— but he is such a breath of fresh air! We chatted for almost an hour until I realized it was time for him to get his breakfast and soon head out the door for school!

Jake had a rough night again.  We traded places and he went home to do some work on his truck. Most of his work right now is three hours away and he wanted to be home this evening for Trace so instead he spent the day fixing his equipment. 

Avry FaceTimed Trace the night before and begged him to ‘meet her’ at the hospital tonight so she’s been excitedly waiting all day for him to come home from school!

She was so excited to see him. She jumped on the bed!! they played hide and seek in the room and we played the famous Uno attack and a new magnet game Jake picked up. I absolutely adore our family time together.
I don’t know how else to explain it except it is pure magic. Not all the time. But there is a piece of heaven that is present  when we’re all together.  I don’t know how else to describe it. I wouldn’t wish this journey on anyone but I also wouldn’t trade the piece of heaven that we get to hold and experience.


Friday Feb 13
Dr Mitchell is our Oncologist this week so I know that good things will happen! He came in to talk for awhile.  Her ANC dropped significantly which is alarming. We’re going to restart G-CSF today.

We got the test results back and she indeed does not have an infection which is in part a relief -it is very good to know what we’re dealing with but also this complicates further treatment.  The oncologiy team met yesterday to discuss Avrys future treatment. It seems post transplant/ post radiation, her organs are too fragile for chemo.

I’m going to try a very hard to explain in my own words what I understand is going on.

The Chemo doesn’t just hit cancer. It hits every fast-dividing cell in the body. The three fastest-dividing systems are:
• bone marrow (blood counts)
• gut lining (diarrhea, nausea)
• immune system (infection risk)

In Avry’s case , the chemo  injury is delayed and prolonged.

Why diarrhea can last this long—
The intestinal lining is like a shag carpet of cells that replace themselves every few days. Chemo strips that lining.
Imagine:

a chemical burn inside the gut

Until those cells regenerate, the intestine can’t absorb water normally. That causes:

• severe diarrhea
• electrolyte loss
• dehydration
• inflammation
• risk of infection

If the lining is still raw, adding more chemo is like pouring acid on a wound that hasn’t healed.

It’s not just uncomfortable — it becomes medically dangerous.

Why her blood counts are still dropping??

Bone marrow suppression is also delayed.

Chemo damages the “factory” that produces:
• white blood cells
• red blood cells
• platelets

The cells that were already in circulation keep working for a few days. But once they die off, the marrow hasn’t recovered yet — so counts crash.

Why giving more chemo could be more dangerous than stopping-

This is the part that feels counterintuitive emotionally.

We think:
More chemo = more fighting cancer

But medicine has a different rule:

A body that can’t survive treatment can’t survive the cure.

If they give chemo when:

• she’s dehydrated
• her gut lining is destroyed
• her immune system is suppressed
• her marrow isn’t recovering

then the risk becomes:

• life-threatening infection
• sepsis
• organ damage
• inability to recover at all

At that point, chemo isn’t fighting cancer.

It’s fighting her. 💔💔💔

Doctors pause chemo when the treatment risk outweighs the cancer benefit. Not because they’re giving up — but because they’re protecting the body that has to carry her through the rest of therapy.


If it helps, think of chemo like wildfire:

It burns the bad forest.
But you have to let the soil recover
or nothing grows back.


I know the fear underneath is:

Are we losing ground?

But in pediatric oncology, survival depends on dose intensity balanced with recovery. Children who are pushed past what their bodies can tolerate don’t do better — they die.


It’s a lot to carry. Right now it feels like we’re throwing spaghetti at the wall, trying anything that might help the diarrhea because even the doctors admit they’ve never seen this exact complication before. 

We still don’t have answers about what this means long-term. She’s lost some weight,
but it doesn’t seem
Like she’s too weak to fight. And today we started trickle feeds at 5 ml an hour, and so far her little body is tolerating it. We’re taking that as a win.

And yet… the uncertainty is heavy. These circumstances don’t feel good. Some days the fear sits in my stomach and the best thing I can offer myself is to just acknowledge the fear and not let it drive or run.

So we go back to what has held us steady from the beginning:

“God has always made a dry path for us.
He has opened doors no man could open.
Even though we walk through the valley of the shadow of death, we will fear no evil — because He is with us.
He who began a good work will continue it.
No weapon formed against us will prosper.
We shall live and not die.”

When everything feels fragile, those words become our footing. We don’t pretend this is easy. We just choose, again and again, to stand on what has carried us this far.

Please continue to pray for Avry’s oncology team — that God would guide every decision with wisdom beyond their training and clarity beyond their understanding. Pray that the choices made today would protect her future and lead her closer to complete healing.

Pray for Jake and I — for peace that steadies us, reassurance that anchors us, and trust that runs deeper than fear. When the unknown feels loud, pray that God’s presence feels louder.

Pray that the Lord continues to place the right people in our path — encouragers, helpers, prayer warriors — those willing to link arms with us and hold them up when ours grow tired.

Pray for Trace as he navigates emotions no child should have to carry. Pray that in the middle of the schedule changes and hospital days, he never feels overlooked. Pray courage into his heart, and a deep, unshakable knowing that he is treasured and fiercely loved.

And please pray over our sweet, sassy Avry — that her body would be strengthened for the road ahead. Pray healing over her organs, restoration over every system, and resilience in every cell. Pray comfort in her pain, and peace in her little mind. Above all, pray that she feels surrounded — wrapped in love, held by God, and covered in prayer.

Pray for endurance for our family. Pray for protection over our home. Pray for miracles in the quiet places we cannot see yet. And pray that even here — especially here — hope keeps breathing.

Thank you for standing with us.

-our story for God’s glory

P.S. I include more photos on theother platform 👇
https://avrystory.my.canva.site/avryjo-links