December 21, 2025


December 12, 2025

Every day we see just a little bit more of our little Avry girl and she’s looking more and more like herself too! Her hair and eye brows are coming in dark and  Jake says he can watch her eye eyelashes  grow daily!  I’m so curious whether or not she will lose her hair over the next five months of chemo. It is a different cocktail and some lose their hair and some children just get splotchy and some don’t lose it at all. 

Yesterday we finally got a call from Dallas  asking us to come next week. That will be an overnight stay.  We will meet the different teams and she will have her ‘form’ made for radiation.   It takes 10 days to get the form back- this means we will not be able to start radiation until after the 80 day window post transplant.  This could potentially mean that we have to do a round of chemo and immunotherapy before starting radiation.  Deep sigh.  Everything in me does not want to go back into the hospital and start chemo and immunotherapy before we do radiation. But I know that there’s nothing that I can do about it and so it is what it is.  So we’re praying that maybe the form can be fast tracked and they will get it back before the 10 days. We would just love to be doing radiation over Christmas break so Trace could be with us for the two weeks! So much of our life is just completely out of our control-there is no planning, there is no schedule, we are at the mercy of treating cancer  and preserving life.  Someone asked me if I’m not freaking out about the fact that we don’t know when or where we will even be staying. And while I have had moments of  panic surge through me- I always come back to the fact that it’s out of my control and there is absolutely nothing that I can do about it and I remind myself that God is in control and his timing has always been perfect. I could write pages of miracles when we felt like we were up against a wall, and all the right doors opened. There has always been a dry path through our Red Sea and I know in my heart of hearts that there will always be.  

Last week was  Avrys sedated hearing test. The sedation part was rough- quite possibly the worst to date. In hindsight, I realize how much medication she has been on every other time we have gone through sedation. We no longer give her a pre-sedation med because it seems like it only makes it worse.  But today, I wish we would’ve tried again. We wheeled back to the OR and I was keeping her mind entertained with all the happy thoughts and trying to keep her engaged, but she knew. As soon as we wheeled through the heavy doors into the bright lights of the OR she started screaming. As if she knew what was coming. I had explained to her that she’s going to take a nap while I hold her. She was so scared. It took five of us to hold her down while they put the gas mask on. Then she somehow so quickly managed to yank off the hose which stopped ed the flow of  the meds which made her wake up even more. So while she was screaming and hollering and kicking, we are trying to sedate her. 🙈All the while I’m holding her and slowly watching her body go limp in my arms. God have mercy!!!!!!!  

I didn’t even try to not cry because this is merciless. What even is this??  The Anesthesiologist was absolutely appalled and not prepared for that hose coming off!   And part of me was filled with pride- because that kind of fight is survivor kind of fight! Without this kind of fight, this child wouldn’t have survived what she has!  I lifted her into the table and kissed her and gathered her things. The room thanked me for coming in with her. (OK now I’m so confused because I have fought tooth and nail  the whole way up the ladder to get to this point to come back to the OR with her. And so many of the anesthesiologists wouldn’t have it and now this team is thanking me?? I don’t understand). I was at the door ready to exit when I met Dr Haynes.  ‘Mom we talked about this-‘ ‘ yes we did and I told you I can’t guarantee that I’m not gonna cry, that all bets are off!’  He shook his head. I knew he would have words!  I left the room and the nurse came out behind me and hugged me and reassured me that it’s the hardest thing a mother has to do/ and that ‘I did well’ (eye roll) and she’ll keep me updated and take care of Avry!  

I found a corner and cried my eyes out. Angry at life -at what I just did to my sweet child and so hurt  for Avry. 😭💔I went to find Jake.  The ENT was going to remove ear wax and then they were going to do the ABR (auditory brainstem response / non-invasive hearing test that measures the brain's electrical activity in response to sound, tracing the path from the ear to the brainstem). It was a 2 hour test and then the Nurse Practitioner from 3 East would come down and do all of her dressing changes.  

I felt like déjà vu being back- It felt like yesterday we sat in the same preop and postop waiting for the first time. The OR hallway and the prep room for all her surgeries but especially the big surgery… it’s oddly comforting and makes you want to vomit at the same time. 

Walking back to wait- you need something to do. I think a lot of people prefer someone to sit with them during prasedures and surgeries but not me. If Jake can’t be here, I’d rather be alone. 

Holding her down and watching her fight with everything in her…

And I know it’s going to make the next couple of weeks more difficult - she will be even more insecure and scared of so many things.

 There’s a grief inside that moment that no language really captures—because it isn’t just sadness. It’s a collision of emotions that were never meant to exist in the same breath.

We waited over three hours. Why were they not letting us know what was going on?  Why is it taking so long? One could obsess over the refresh button  or pace the floors. We went to the OR station and we were taken back to the consult room. 

The audiologist, Michelle came in to discuss the results.  Her face  already told the story.  She sat down and said ‘I’m going to be very honest with you- there is severe hearing loss, and it’s  significantly more than 6 months ago. You weren’t wrong.’ 

She showed us the graph of the things that she can hear and what it  sounds like for Avry.  

Avry currently has access to 30% of conversations in the right ear and access to 52% in the left ear.  Hearing aids may  help but we need to start thinking of other options for her.  

I knew it was bad but nothing prepares you for the Dr to say how bad  it is. My heart can’t handle the idea of her world being so quiet. No wonder she is so afraid and so insecure and asks so many questions. There are sounds she will never be able to hear again. This loss is permanent. It’s not coming back. This is a side effect of the chemo that she needed to eradicate the cancer in the bone marrow.  

Michelle also said  she will

Talk to Dr Wells (our oncologist) about the next  chemos because we need to adjust the cocktail to midigate any more hearing loss. Obviously life comes before hearing. Michelle apologized for Dr Haynes. I laughed. We’ve had Dr Haynes from day 1 and we’re pretty honest with each other. He was the anesthesiologist, one of the very first times and he knew from then- it’s a big deal for this mama…he told me from the first - ‘ I tell the mamas they don’t have to cry because I’m in charge-but no matter what I tell them, they still end up crying.’ Michele just rolled her eyes. She said ‘ he’s just an adorable teddy bear. But don’t ever tell him I told you that because that will go to his head!’ 🤣(he’s probably almost 70) 

It hit me like a ton of bricks.  Probably harder than the cancer diagnosis itself. Shock riveted me into taking the next step and the next. The past 9 months have worn away the rose colored glasses Id been wearing and this- this just feels so evil.  

Dr. Wells was deeply saddened to learn that Avry’s hearing loss is even more extensive. He shared his regret, and I want to explain the context with clarity.

In order for Avry to receive the immunotherapy that offers the best possible outcome, she had to be enrolled in a documented clinical study. We were—and still are—willing participants, because if her journey can help another child in the future, that matters to us.

The study protocol required a specific chemotherapy agent that carries a very small risk of hearing loss. Unfortunately, Avry was affected by that rare side effect. We continued the medication according to protocol, hoping it would not happen again—because statistically, it is extremely uncommon.

This immunotherapy was essential. It is currently the best option for targeting disease involvement in the bone and bone marrow, and in situations like this, life must take priority over hearing.

It was, and is, a painful gamble—but one made with intention, knowledge, and care.

We are deeply grateful for Dr. Wells and his team. He made the best decisions possible with the information available at the time, always with Avry’s life and future at the center.

We’ve officially put a down payment on Honey—the service dog who will one day be Avry’s. Honey will help keep Avry safe and support her as she learns to navigate life without hearing. She’s just 8 weeks old and will head to the trainer sometime between Christmas and New Year’s. If all goes as planned, she’ll be ready to join our family in late spring. It will require extensive training for all of us. And I’ll be honest—I am not a dog lover, and I’m definitely not a house-dog person. But I am incredibly grateful this option exists for our little girl.

We also had another full week of birthdays in this house—thank you so much for all the messages and love. Mine was the 9th, Trace’s the 11th, and Jake’s the 13th. When you receive a cancer diagnosis like we have, you don’t immediately think about all the things you might miss—until they’re suddenly right in front of you. The greatest gift of all was simply being home that week and celebrating together as a family. I forget so easily how deeply little people’s joy and sparkly eyes can grab your heart and leave soul-deep imprints.

I can’t fully explain how wonderful it is to see Avry doing so well. She loves helping unload the dishwasher and often asks what she can do to help around the house. Her sparkly sass is back in full force and usually leaves her big brother laughing—much to her frustration. She’s just starting to run after Trace again, and we often hear, “Wait for me, Tracey!” She hates when he goes to school and asks me—hourly—how long until he comes home.

She is 100% off tube feeds. She’s lost a little weight and is far less puffy, but she’s holding her own. What she eats may be a bit unconventional, but the win is this: she’s digesting her own food. And that is huge. It makes us smile every time she begs for chocolate milk the moment she wakes up—it feels like she’s slowly coming back to us, piece by piece.

There are so many things she hasn’t done in the last nine months that she’s beginning to do again. One of my favorites is when she lets out a content, happy little sigh after supper and says, “And now we’re a family.”

The week of our birthdays, we are headed to San Antonio for the weekend. Every year, Jake has a work- Christmas party. So we take in the Riverwalk at night under the thousands of Christmas lights. Jake’s sister was here too and we had a great weekend. 

December 21

We were in Dallas on Thursday and Friday. We met the team and got her scans done pre radiation. 

I’ve been in knots over 13 days of sedation, after the horrific experiences.  

The team was ON IT!  I expressed my concerns and told them exactly how it has been going with sedation. I quite frankly have no words…It was the best sedation to date. They allowed both Jake and I back into the room. Jake had talked to Avry previously about this and warned her that we’re going to do the mask again and she was absolutely terrified. After the last sedation, she remembered clearly them fighting her, and she wondered why nobody was listening to her that she didn’t want it on her face?! She was so upset…  Friday morning, the anesthesiologist came in and we discussed several options and she came up with a really great plan!! Avry kept telling me ‘mama I’m gonna try to go to sleep now.’ That was her way of wanting to fall asleep so that they didn’t have to do the mask. The anesthesiologist told us she would not use the mask and she will do everything in her power to make it smooth - that this journey is horrible enough without having to be traumatized by these sedations because they happen  day after day! Avry wasn’t actually sleeping so I told her- that we’re not going to do the mask!! She relaxed. We wheeled into a dimly lit cozy room and I held her the whole time. They injected her with the meds and she fell asleep in my arms. Jake transferred her to the table and we left the room. No- it’s unnatural and goes against mother nature but it wasn’t traumatic!!!!  Thank you Jesus! We stayed in the waiting area.  They wheeled her back into the room we were waiting and she was still sleeping. When she woke up, I was holding her hand- there was no screaming or hysteria. She opened her eyes a few times and went back to sleep. When she did wake up, she asked me to lay beside her and snuggle with her. After about 20 minutes, she was  ready to sit up! Very quickly, she won over everyone in the room- asking so politely for a drink of cold water, and wanting to do stickers!  I mean—- what???? I didn’t even know this is possible!! Nine months of traumatic horrors… and we could’ve had this all along?? This I can do! This is humane.  I couldn’t even believe it. I talked to the anesthesiologist long and hard. I asked her if there’s anyway that I can request her every time obviously not every time but she has a colleague that would be fine with the treatment plan that she’s come up with. She also has an 11-year-old and a five-year-old. Her own mother just passed away from cancer. She was so kind so gentle and so much fun! She stayed and visited and didn’t leave until we left. The definition of an angel in human form. It couldn’t have gone better! We might be okay. 

If I’ve learned anything, it is to advocate for your child and never to give up. There is absolutely no reason in the world that it has to be so traumatic.  The anesthesiologist warned me that it doesn’t mean it will always be this way because when you do a sedation day after day, it does take a toll on a child’s body and sometimes they do get grumpy. But I can do grumpy!  Grumpy and crying doesn’t come anywhere close to five people restraining your child until

They fall asleep into an induced anesthetic state- and then wake up angry at the world because they can’t figure out what in the world has just happened?! The anesthesiologist also told me that the way a child goes to sleep is also the way that they wake up- not very many doctors will ever admit this part that we have experienced first hand! There was one other anesthesiologist that told us this 3 months ago- that part of the unstable vital signs post sedation is in direct correlation with the psychological trauma.  God have mercy on these poor babies!! I don’t even know how this is allowed from legal standpoint. 

As we were walking out, the anesthesiologist wondered when we would be coming back assuming that it wouldn’t be until the end of January! The only reason that we got in so quickly after today was because our 80 day window is up! It’s hard to believe that it’s been 80 days since day one of her second transplant! We are so incredibly grateful that we got in yet in December. It could not be better timing! We are excited to spend these two weeks as a family of 4! 

We felt like we were left  scrambling to find a place to stay since the Ronald McDonald house has a waiting list, we were forced to find something else nearby. Most of the long-term Airbnb’s require a 60 day minimum background check. We needed something now! We were denied a couple of places that we checked into and started looking at hotels, even though that was not our preference! We finally found a place- in the medical district,  that didn’t require a background check for the entire three weeks! I’m so grateful that we don’t have to move places partway through. It’s a 2 bedroom Air b&b just minutes from the hospital.  Dallas traffic is no joke! 35 is just miserable this time of the year.  Avry will have off of radiation over the weekends and holidays.  At this point, we do not plan to come home on the weekends- because it is a 4 Hour Dr. and that is a long way with a nauseous child!  I’m not sure what we’re going to do the whole time- we’re taking Lego kits that we’ve been saving up that have been gifts, puzzles, books, and games. Next week looks like it’s supposed to be in the mid 70s so we’re going to try to be outside as much as possible! It’s Dallas- there’s lots to do and the city to explore! Obviously all depending on how Avry is feeling. We want to make the best out of these two weeks of family time!  And we’re definitely open to having friends come by- 🥰 if you’re needing a place to visit over the holidays, Dallas is a straight through flight away! 

Meg is going home for the holidays and will come back the weekend before school starts up again in January. 

We are just so grateful that radiation is landing right over Christmas vacation so Trace can be with us for at least 2 of the weeks! 

Monday, The 22nd Avry is scheduled to get fitted for her hearing aids. They are a trial run. The hope is that she will be able to hear enough to not delay development. At this time, I’m not even thinking about the other options they mentioned. ‘God please work a miracle!’   Pray for her as she adjusts to them and that the fitting goes well! 

It’s hard to believe that we are back on the front line of fighting this horrible monster again. It’s time and we’re ready to finish the 2nd trimester of front line treatment. 

Thank you to the school classes who put together sunshine boxes and Christmas presents. I know how much time, effort, and heart it takes to give in this way, and it means more than you can imagine.

And to the teachers—thank you for leading with such beautiful intention. You are giving your students far more than lessons from a book. By guiding them in kindness, generosity, and empathy, you are shaping hearts and planting seeds that will last a lifetime. Your love and example do not go unnoticed, and we are so deeply grateful.

Thank you to the churches who have lifted offerings and given so generously. Your compassion, prayers, and willingness to step in and carry this burden alongside us have been a profound blessing. We are deeply grateful for your hearts, your faith in action, and the way you reflect Christ’s love through such tangible generosity.

Thank you for the Christmas gifts, the personal checks from strangers, the cards filled with encouragement, and the constant kindness surrounding us. I truly don’t know if we would still be standing without you. Your love, generosity, and presence have carried us in ways words can hardly express. Thank you for being here this year—and for loving us so incredibly well.

-our story for God’s Glory