I know I have been silent for quite a while. It’s taking me a while to regain my balance on my axis! 

I’m going to try to do a recap for my own benefit to look back hopefully not at your expense. 

April 20-25

Ang came from Indiana for a week. Honestly, I had such a hard time letting her come at first. But I finally reached a point where I realized… I truly needed help. I needed a week to breathe, rest, and prepare mentally and physically for the hospital post baby loss.  Jake had work booked. Over the past year, he’s had to cancel so many jobs because it’s been nearly impossible to make plans when our life changes overnight so often. Every time we think we have a schedule figured out, something unexpected happens. He’s lost local contracts this year because of it, which has forced him to travel more for work. Right now he has long-distance hauls scheduled that he simply cannot cancel. This is where having a village matters so, so much because there’s only one of me and I can’t do it all as much as I have tried! I had my reservations about Ang coming because Avry trusts almost no one, and I worried about how it would go and if it would even be worth it for her to come if Avry would just cling to me. I also worried about pulling Ang away from her own little family. But Ang made it very clear to me to quit worrying about her and her family — that she could very easily come and wanted to be here for us. That alone meant so much to me.

And honestly, all of my fears ended up being for absolutely nothing. We were blown away by how well Avry did with her. She latched onto Ang immediately.

They spent hours at the bar coloring, crafting, painting, and playing with Play-Doh. Ang’s calm presence did something so special for Avry. It made her feel safe. Relaxed. Able to trust. That alone felt like such a gift.

And Ang didn’t just help with Avry — she stepped in and carried all of us. She made sure Trace got to and from school and baseball, filled his tank emotionally and physically, and just quietly took care of everything that needed to be done. For the first time in over a year, I was actually able to lay down and rest for several hours every day. That is something I had honestly stopped believing was possible unless Jake was home. My mind and body needed that rest more than I can even explain.

I can’t tell you how many times Ang and I just looked at each other in complete disbelief over how unbelievably well Avry did with her. It was  healing on so many levels for me.

The last time Ang and Lamar were here was right after transplant, when we had just gotten home from the hospital and Avry was still very much in her own little world. I don’t think Ang even knew Avry could talk this much now. They arranged all the beautiful bouquets that had been sent, and when Ang saw hummingbirds around Avry’s flowers, she went and bought her a hummingbird feeder and filled it with sugar water.

Avry allowed Ang to take care of her!!  They colored, painted, laughed so much, went for cupcakes, went swimming and simply lived life together. Ang… I will never forget how you swooped in and picked all of us up this week. What a gift you have been to our family!! Into all of Ang and Lamar’s family that picked up the pieces on that end- we are most grateful!

Avry had her first non-sedated hearing aid fitting today. Jake and I honestly expected the worst based on past experiences, so we went in preparing ourselves for a really hard appointment. Kaylee, our ENT tech who has been with us since the very beginning, intentionally scheduled a full 90 minutes because she was preparing for the worst outcome too. And somehow… we all ended up completely blown away by Avry.

There were definitely tears, but she wasn’t hysterical. She stayed regulated enough for us to actually complete the fitting and get everything done. What a huge win this was. It feels like we’re watching Avry change and heal by leaps and bounds right in front of our eyes. The growth we’re seeing in her lately has been so beautiful and emotional to witness.

Someone said to Avry the other day, “Isn’t it fun to be cheerful?” and while I know it was innocent, internally I rolled my eyes so hard I’m amazed they didn’t stay there. Because what we’re seeing in Avry right now is not simply a child choosing a better mood — we are witnessing healing. We are watching a little girl who is finally not living in relentless pain every second of the day. A child who is home more than she is hospitalized, who is finally beginning to feel safety, stability, predictability, and peace in her nervous system again. She literally could not help what you saw over the past year. What you witnessed was a child enduring levels of pain most adults could never comprehend, medications strong enough to take grown adults down for life, trauma after trauma, needles, sedations, fear, and survival (that unfortunately so many people just do not understand or wish to try.) It’s the same with the comments about potty training. Avry was potty trained before she was three years old, and then suddenly she regressed and we couldn’t understand why. I read books, asked questions, and even processed the psychology behind it all with Dr. Paul trying to understand what was happening beneath the surface. What we didn’t know at the time was that there was a massive tumor sitting on her adrenal gland affecting her little body in ways we couldn’t yet see or explain. So no, the week we lost our baby,  potty training was not the priority — and honestly, it still isn’t. So relax, Susan, and stay potty trained 😝 because we are not over here!!  And please don’t say things to Avry about it being “time to go potty.” She’s embarrassed. She remembers sitting on the potty unable to go, frustrated, scared, and confused in her own body. There’s trauma attached to that for her. Cancer changes you. It rearranges what matters and strips life down to what is truly important. And if our daughter feels safe, alive, connected, and at peace in her body again, then we are already celebrating miracles most people will never fully understand.

The same goes for when the youth girls called Avry a “spoiled brat” or say she “gets everything she wants,” because it tells me just how little they understand what survival mode, trauma, or care about what it actually looks like for a child fighting cancer. 😭💔 Did we say yes this past year more than we probably ever would have before cancer? Absolutely. One hundred percent. But our goal this year has been to save this child’s life — not to make sure she is socially polished, perfectly behaviorally adapted, or meeting everyone else’s parenting expectations and convictions about things like tablets, routines, sleeping habits, or what they think children “should” look like.

When your child is enduring pain most adults could not survive, when they are being pumped full of medications that would take grown adults down for life and make the child feel completely unfamiliar in their own body, 

when they are isolated, traumatized, terrified, and fighting for their life… your priorities radically change. 

Suddenly the comfort item, the iPad, the safe food, the extra snuggles, the sleeping arrangement, the little “yeses” that help regulate their nervous system — those things don’t feel excessive anymore. They feel necessary. 💔 

I’m telling you, there are so many truly beautiful people in this world whose hearts completely shatter at the sight of a child like Avry. People who choose to see her resilience, her courage, her strength, and the impossible road she has walked. People who lead with compassion instead of criticism.  Who have reached out to us as parents and encouraged and uplifted and continually poured into us not because they had the perfect words or had experience with this, but simply because they chose to care- Those people have held us together this year.

But unfortunately, we have also been met with some of the harshest judgment, criticism, and honestly evil hearts clothed in ‘righteous filthy rags’ who are on the outside put on a pedestal because of how the appear. And this is where discernment comes in. Because when people speak harshly about a suffering child, or judge parents fighting to keep their daughter alive, you learn very quickly who is safe and who is not. And that part has been heartbreaking. Especially when it comes from people you genuinely loved and to your face expressed genuine care. But hard seasons reveal people. They reveal hearts. And when someone shows you their truest self — believe them.

At the end of the day, our daughter is alive. She is healing. She is smiling again. She feels safe again. And I will never apologize for whatever it took to help carry her through the darkest year of her life. 

I am so, so grateful for my background in trauma and positive psychology because honestly, I don’t think our family would have survived this past year without it. When a family is walking through something this devastating, the last thing they need is negativity, gossip, backstabbing, or people who show up under the disguise of sympathy only to later use your vulnerability against you. And that doesn’t mean this season hasn’t been incredibly hard emotionally, because let me tell you — continuing to love people, extending grace, and choosing forgiveness after being deeply hurt has been one of the hardest parts of this journey. Sometimes forgiveness isn’t a one-time thing; sometimes it’s waking up every single day and consciously choosing not to let bitterness poison your own heart. But more than anything, this season has taught us to focus on the people who have truly been here — the people who have loved us unconditionally without judgment, criticism, gossip, or keeping score. The people willing to learn instead of instantly writing us off because we don’t fit their mold, their expectations, or their standards for what grief, trauma, and survival should look like. And then… to let the rest go. Not because the hurt was nothing, because it absolutely was not nothing. Some things cut deeply and leave real wounds. Positive psychology is not pretending pain didn’t happen or brushing things under the rug while smiling through it. It’s being honest enough to see things clearly for what they are without allowing them to harden you into someone you were never meant to become. Holding onto bitterness and unforgiveness only destroys us in the end, but acknowledging truth, having discernment, setting boundaries, and protecting your peace? That’s not bitterness. That’s wisdom.

The Church is often really good at celebration.

We know how to show up when the miracle comes.

We know how to clap when the prayers are answered, when the testimony is polished, when the family finally makes it through the fire.

But sitting in the middle of someone’s suffering?

That’s where many people disappear.

Because pain is uncomfortable.

Grief is inconvenient.

And showing up for people when nothing can be “fixed” requires something deeper than words—it requires presence.

So many stand on the sidelines analyzing, judging, or convincing themselves they “just don’t know what to do,” as if uncertainty excuses absence.

But love has never required expertise.

It requires willingness.

You don’t have to have the perfect words to bring a coffee.

You don’t need a counseling degree to send a text.

You don’t need theological answers to sit beside someone in the dark and say, “I’m here.”

Sometimes the greatest ministry isn’t preaching.

It’s showing up.

Quietly. Consistently. Without needing recognition.

Because hurting people rarely remember the perfect advice.

They remember who stayed.

Who carried the weight with them.

Who stepped into the awkwardness instead of avoiding it.

And maybe that’s the tension we need to wrestle with:

Have we mistaken Christianity for observation instead of embodiment?

Because Jesus didn’t love people from a distance.

He entered the mess.

He touched lepers.

He wept with grieving families.

He moved toward suffering, not away from it.

Real compassion costs something.

It interrupts comfort.

It requires us to stop spectating and start carrying one another.

The Church doesn’t need to become better at appearances.

It needs to become better at presence.

You know by now that I share from my heart. Not to play the victim. Not to gain sympathy. But because I’ve realized something powerful: when one person has the courage to be honest with themselves, it gives other people permission to do the same.

Honesty is uncomfortable. Vulnerability is uncomfortable. But pretending is exhausting. So many of us are walking around carrying pain, grief, disappointment, fear, resentment, confusion, overwhelm… while smiling on the outside because we think we’re supposed to “have it together.” Somewhere along the way, we created this belief that negative emotion is bad. That if we feel grief, anger, sadness, fear, disappointment—or express it in any way—then we must be unstable, weak, “too much,” or in need of fixing.

But newsflash: human emotion is not meant to be 100% positive all the time. Life is 50/50. About half of our emotional experience feels good, and half of it feels hard. That’s not dysfunction. That’s being human.

The problem is that most people spend their lives trying to outrun discomfort. Avoiding hard conversations. Suppressing pain. Numbing grief. Smiling through exhaustion. Pretending they’re okay because they think negative emotion means something is wrong with them. But healing doesn’t happen through pretending. Healing begins when truth is finally allowed into the room.

And eventually, the body keeps score. Because when you deny yourself permission to acknowledge pain, you also deny yourself access to the full depth of joy, peace, connection, gratitude, and pleasure. You flatten your emotional world. You disconnect from yourself. You become functional… but emotionally absent. Performing instead of truly living.

We were never created to be robots. We were created to feel. To grieve. To celebrate. To cry. To laugh. To ache. To heal. To hold both sorrow and gratitude at the same time. Jesus was  a perfect example of this. 

And that’s why authenticity matters so much. Because when someone shares honestly—not dramatically, not manipulatively, but truthfully—it breaks the illusion that everyone else is fine. It reminds people: “Maybe I’m not crazy. Maybe I’m not alone. Maybe I can finally be honest too.”

Real healing is not becoming emotionless. It’s learning how to experience emotion without being ruled by it. Because suppressing emotion doesn’t make it disappear. It just comes out sideways—through anxiety, burnout, chronic stress, numbness, resentment, exhaustion, disconnection, and sometimes unexplained physical sickness.

Not every hard thing needs to be hidden. Being honest about pain does not make someone weak. Sometimes it’s the bravest thing a person can do. Feeling your emotions is not weakness. It’s healthy.  It’s wisdom. It’s awareness. It’s being fully alive.

And while this has not been easy on top of an already incredibly hard year… I truly believe every rejection is just another door leading to a different opportunity.

When you hold onto unforgiveness and anger, your hands stay clenched like fists—ready to fight, ready to defend, ready to stay stuck in survival mode. But when you bless and release, your hands open. You drop the rope. And an open hand is no longer preparing for battle… it’s preparing to receive.

That doesn’t mean you go backward. It doesn’t mean you allow harmful behavior back into your life or abandon healthy boundaries. It simply means you stop allowing other people’s choices, intentions, or actions to have power over your peace.

Because when your hands are open, this is where healing begins. This is where God can move. This is where bitterness no longer gets to define you, ruin you, or rule you. 

When you can look the same people in the eye with love and compassion instead of hatred, because you realize that people who wound others are often deeply wounded themselves… that is healing.

Not because what happened was okay. Not because you suddenly trust them again. Not because boundaries disappear.

But because their behavior no longer owns your heart. Their bitterness no longer becomes yours. You begin to understand that truly happy, whole, and free people do not spend their lives trying to tear others apart.

And that kind of freedom changes you forever. 

April 26 

Jewel Nolt came from PA! We had this planned for over a month and the timing couldn’t have been more perfect. We did not know that we would be in the hospital this week, much less just come thro losing our baby or that Jake would be out of town this week while we were in the hospital. But God knew all along and was putting us in perfect position for this week!   I thought there’s no way I can humanly do this alone with Avry in the hospital this week and Jake out of town— feeling  the way I was feeling. I knew there had to be a way I could do it, but I didn’t know how… but again God was looking out for me! He sent rain all of last week and it pushed off Jake’s departure until Monday at noon so that meant he could take Avry and I to the hospital and Jewel could handle getting Trace where he needed to go. It worked out more perfectly than what we could’ve even planned….

April 27  post consolidation round  4; Day 1 

Avry really did not want to go into the hospital and I did not want to even more so. Oh We are so ready to be done! This morning in the clinic she needed her NG tube replaced.  (remember back when she put it in all by herself?!) she’s trying so hard to understand hospital, life, and cancer and sickness and health, and put it all together in her little head! Her question always is, do other little girls need to do this?  She fought and fought the NG tube because it really does feel pretty terrible they say- and afterwards she just sat there so heartbroken- and looked up at her daddy and said ‘this just isn’t fair’ 💔. She’s so badly wishes either Trace or I would have to go through all the same things she does so she wouldn’t have to do it alone…

Nothing ever prepares you for having these conversations with your four-year-old. Parents aren’t given a handbook on what to do when your three year-old is diagnosed with cancer and how to parent a child while fighting for their life. There’s a lot of life that doesn’t make sense right now-What I know to be true, is that every single day we get up with a smile on our face. Every single day we give it our very best shot at giving our little girl the best chance in the world to kick cancer’s ugly butt. In your eyes, we might be failing on every other level. But what I know to be true, is that this girlie knows she is loved no matter what and even if. and that she matters and that if I could, I would take it all for her in a heartbeat! I would take all of it if it meant, she got to have a happy childhood-one that most of the rest of us have had without cancer. One without being isolated from the rest of the world. One that is lived outdoors and without so many limitations.  I take it all in a heartbeat if I could.  The pain, the everything…

I’ve never known such a brave heart as that little one laying in that big white bed on pediatric floor of Dell children’s…She’s teaching us more about life than anything else ever could.

She reminds us to trust when we have no reason to other than to simply trust. To love when it feels reckless and to smile in spite of not knowing what the next minute will hold. To grab onto every single opportunity there is to smile with all her  teeth and belly laugh in spite of the hell you just walked through. And that’s a resiliency that stage 4 pediatric cancer exposes. 

We didn’t start the infusions till 11:00 so every morning we would start the day with her wipe down (with the ‘warm purple cloths’ that make her skin sticky, but are a requirement during chemo)  and bed linen change. Usually Avry sits on the couch or plays a game while I wipe down the room and shower. I love having my room clean and neat before we leave for a few hours. And we load up the stroller and put Avry’s little shoes on so she can walk in the hallways and hit the halls with her big heavy pole! We gotta say hi to all the nurses and see who’s working and get some fish food and then go for coffee and breakfast. This week we’re spending as much time outside because it is so beautiful so we take all of our crafts, sidewalk, chalk, and bubbles and spend at least two hours outside every morning before we have to head to start treatment!  I’m so grateful for this time outside! Avry’s feeling so well she walked the whole way out of the healing gardens until the last two days, then she’s stiff and sore and in a lot of pain from the buildup of the medicine so then she rides in the stroller.  (she is just about outgrowing the stroller/I can’t believe how much she’s grown this past year!) 

Jewel came to meet us for a few hours before infusion started and what a wonderful way to break up the day!! oh we had so much fun, laughing and crafting with Avry! It’s such a special gift when someone comes in and gets on her level and on her terms.  Jewel and Avry were painting and I hadn’t brought all the supplies out so I ran in and got them… this is a huge win!! She felt comfortable and safe with Jewel to let me out of her sight for more than a second and at the hospital at that!!  Every morning, Avry couldn’t wait for Jewel to come in

So we could go out into the gardens with her.  She’s doing so well for Trace at home, making sure he gets everywhere and packing his lunch one more week.  Tonight they came into see us! Avry is so bummed out that she can’t leave the room for 12+ hours and that’s especially hard when Trace is here.  We door dashed dinner tonight and I was aching to get out of the room for a few seconds… and believe it or not she was fine with it!! so Trace and I went down to get the DoorDash and very slowly took her time coming back.  The chemo changes Avry’s taste buds and during induction phase she quit eating altogether, but during post consolidation she actually does crave food and you never know what it’s gonna be. this time it was chocolate cake.! bless Jewel, she went to Walmart and bought a tiny chocolate cake and brought it in for her!! Avry probably only took a few bites, but every bite counts as it keeps her digestive system working and it is 100% worth the extra energy because I’m trying to do everything in my power to avoid one more therapy after treatment . 

(so yes- under normal circumstances we would never just go buy a cake just because a child wants cake. But this is far from normal circumstances and I just want to take the time to express my gratitude for all of those of you who just get it- even if it doesn’t make sense to you)  

We celebrated Earth Day, which I honestly have no idea what it is pardon me!  But to Avry it  means she gets to go out and paint rocks in the healing garden!  This was one of her favorite memories from last year- and there are still lots of rocks in the healing garden from her from a year ago! They set up tables with brown paper on, and you can sit and paint as many rocks as you wish. They have a list of vegetables they would like you to paint as markers for the garden. Avry was the first patient there and the last patient to leave. She was so determined to paint as many rocks as she could. She wanted to stay until they were all dry, and then we took them over and placed them in the gardens around the plants. The gardeners  remembered her from last year and were entertained by her tenacity and skill.  

There are a lot of activities this week! It’s also superhero day 

Where Austin PD comes in as special costumed superheroes rappel down the side of the building to wave at the kids through the windows. Avry didn’t know anything about superheroes so I did my best to try to explain them… all of the oncology kids were up on the top floor, secluded from the rest of the germs. We all met around the center of the hospital, where the big windows were and we watched there! They had a story to go with it of which Avry was absolutely horrified at.  A whole skit/scene where the bandits  stole the teddy bears and then the superheroes had to come and save the day. And it was very loud music and the bandits had scary voices. Avry was not impressed and burried  her face into Janessa and begged  to go back to her room.  She was not a fan of the scary costumed men that came flying down right in front of her face at the window!  The Superheroes said that all the little faces inside these windows are the real superheroes and their moms and dads 💙  Avry  was very happy to watch Michael one of her physical therapists also rappel off the building but he wasn’t in a scary costume. 

Avry is such a chatterbox with all her nurses! I think the nurses have forgotten the little girl before cancer treatments changed her…she  told about every nurse that walked in ‘so my moms belly hurt really bad and it was because she had a baby inside her belly and it died and then It got wings and flew to heaven and now Jesus is holding our baby. And mama was really sad and so she had to sleep a lot because her belly hurts so much. And I just hate when my mom has pain because I know what Pain is.’  Some  of the nurses already knew because there were things I could no longer do with Avry while being pregnant, so I had shared the news with them a few weeks earlier. But seeing Avry suddenly blurt it out herself was the sweetest thing in the world. The amount of love, hugs, and kindness that surrounded us that week is something I will never forget. Nurses came up and simply flung their arms around me, holding me tight. Words may fade with time, but the way people make you feel stays with you forever.

And that goes far beyond the nurses. So many cards and flowers and precious little sentiments that were sent in honor of our sweet baby… the phone calls and daily check-ins meant so so much!! Neena , Char, our support group has done an excellent job at checking in daily and keeping meals in front of us. We are so loved and overwhelmed with love and kindness! 

Some pain doesn’t feel like it belongs in the same story, and yet here we are. Losing our baby while fighting cancer is a level of heartbreak I don’t even have words for—grieving one life while fighting for another, holding loss in one hand and hope in the other. It’s just too much some days, but somehow, we’re still here. 💔🤍 

Thursday night was a scary night with Avry. We were working with pain management and it seem like we finally found a sweet spot. This week was going so well. She’s never been this good- and what I mean by that is the pain has never been so well controlled that she was able to be herself! 

She finally fallen asleep and I had gone over and layed on the couch.  I had just fallen asleep when I heard all the machine alarms go off. And in my only half awake state I thought surely it was just a monitor that needed readjusting. I ignored it for a little bit and then they thought ripped through my mind. What if it is real? I jumped up and readjusted all the monitors. And still her blood pressure was bottoming  out.  Her pulse was low, but I seen  it a whole lot lower before, and her oxygen was dropping. I called for the nurse, but no reply. I took all of her vitals and another six times.  I grabbed my phone and started taking photos to document what her stats were. The nurse wasn’t coming, and I kept calling for her. What do I do?? I ran out to the nurses station and she wasn’t there so I ran out to the front nurses station. They were in the middle of lunch,but Claudia came back with me immediately! 

Claudia paged the NP, but the NP did not seem worried but told the nurse to take her vitals manually. They were still low. My reference point was last month when Avry bottomed out, and the doctor was in the room for most of the night which should tell you everything you need to know…

The nurse agreed she was very, not OK with Avry’s stats. The NP told the nurse to take her stats every half hour. But the machines and alarms were going crazy and saying something totally different. Finally we were able to get a blood that was on the low side, but not the dangerous side. 

For three hours, my eyes were glued to that screen, watching the stats, checking Avry pulse checking her breathing. And praying.  I blasted out a prayer request… and waited and waited some more. Claudia stayed. 67/37 is too low. She’s hypotensive.  Dr Mitchell told me we don’t want her lower than 78/45 -that was l

 their minimum comfort threshold before intervening more aggressively with fluids, meds, oxygen support, or ICU. I begged the NP to call the Dr. Mitchell since he was on this week. 

Slowly, something began to shift… her blood pressure was coming back up. Her respirations were coming up. The NP came in after she had spoken to Dr. Mitchell and they had gone over it for the past hour.  I continued to watch Avry for an hour bedside to make sure that her blood pressure would stay up after they paused the infusion for a bit.  (immunotherapy infusion plus the fentanyl drip is what contributes to her low blood pressures) sometimes I think her body just cannot take anymore and it’s just begging for a break! 

It was a scary night. Advocating for what I know in my gut is exhausting. When you live this life day after day, you learn your child in a way that cannot always be explained on a chart or captured in a protocol. And while protocols matter, it takes a very special doctor to look beyond what is common, beyond the standard and the norm, and truly see the child in front of them. The doctors and nurses who are willing to pause, listen, and consider the mother who knows her child best carry a kind of compassion and wisdom I will never take for granted.

So we’re staying in the hospital for all extra day, just to make sure her Pain is managed and her blood pressure stays where it needs to. Even though we can’t wait to get home. I feel much better about staying!  

Jake got home from Utah and Trace has finished his last full week of school.  We’re spending the last day in the hospital as a family.  I told Trace yesterday hey can you believe we’re almost done coming to the hospital for inpatient stays?! He got really quiet. I asked him if he’s gonna miss this place? He said no but he’s really gonna miss the nurses! Yeah, same buddy!   

We sat out in the main lobby and colored over coffee for a few hours.  Later in the day, we went out to the healing Gardens. Avry ran down the hall with her Nurse to get fish food!! she has never run in the hospital- this goes to show what pain management can look like!!  I was so glad that Kristina the NP got to see Avry run down the hallway! Kristina is one of my personal favorites from the very beginning, and she brings courage into the room with her-not by what she says, but simply by her presence!  

We went out to the healing gardens, and Avry ran everywhere chitchatting and laughing and singing! Jake and Trace and I just stepped back and watched with tears and amazement!! She’s coming back to us!  No doubt there will still be highs and lows. But I believe with my whole heart, there will be more highs than lows!  I don’t have the words to describe this-except she’s pure magic. Pure light. The kind of child who makes people stop, smile, and believe in hope again.

-our story for God’s glory

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