https://www.facebook.com/groups/1804748633405893/, https://www.bonfire.com/evies-warrior-tribe/

Prayers for Evie: Little Warrior Big Fight, 1600 Fifth Avenue South, Birmingham, AL (2026)

06/07/2026

DI day 47: Evie is feeling even worse. 😭

Her potassium levels have dropped, likely due to the prolonged diarrhea, so she needed potassium infusions the past two days in a row. Her levels don’t seem to be budging, so she’s been put on continuous IV fluids with potassium to try and get her levels higher. We still don’t have GI results, but we’re praying for everything to be negative.

Evie’s also in pain. She’s gotten raspy sounding and has stopped eating completely, so her doctors suspect she’s developed mucositis, which causes open sores along the digestive tract. We’ve upped her pain meds, but otherwise all we can do is wait for it to heal. 😭😭

The nurses have had a lot of trouble getting accurate labs on Evie over past few days. In the past, murky bloodwork has meant that there were fats in Evie’s blood, so her triglyceride levels were checked this morning and, sure enough, they were through the roof at over 1300. This has happened several times before, so we’re treating it the same way we have in the past: fasting. Ordinarily, this is an absolutely awful way to solve the problem, since Evie is little and can’t understand why she’s not being fed. But today, she’s not remotely interested in eating anyway. She’s even refusing to breastfeed. Please pray this works as it has before. If it doesn’t, we could be looking at moving to the Special Care Unit for an insulin drip.

This is a lot and it’s terrifying as a parent. Before embarking on this journey, I had never seen cancer treatment up close and had no idea the of the effects of chemotherapy on the body. It’s brutal to watch. Especially on a baby who doesn’t even understand. 💔

Please pray for our sweet girl to feel better quickly. 🙏🏻

06/05/2026

DI day 45: Evie’s been pretty miserable over the past few days. 😭

Her counts have reached zero, and our sweet baby feels terrible. She’s nauseous and clearly having pain. Her appetite is almost nonexistent. She is still breastfeeding, but less often and is rejecting all solid foods. The only thing that makes her feel better is cruising the halls in her little pink car. ❤️

Evie’s also had diarrhea for about a month with no clear cause, so the GI team decided to start testing to see what’s going on. We’re still waiting on some results, but so far, everything is negative for major issues. 🙌🏻

However, with the nausea, diarrhea, and decreased food intake, the team is getting concerned about dehydration and nutrient deficiencies. So far, Evie is still staying fairly well hydrated with breastmilk alone and has maintained her weight, but she’s developed a protein deficiency, which is the biggest cause for concern. She already has an NG tube in place for medication, so tonight we’re going to try tube feeding her overnight to boost her protein.

In the past, we’ve done either pure breastmilk through the tube or breastmilk mixed with a small amount of baby formula. Since Evie is older and has higher protein needs now, she’ll be getting a protein shake through the tube.

I don’t love tube feeds for many reasons, but chief among them is that Evie often throws them up if we try to put anything other than pumped breastmilk through the tube.

If we have to do this, I’d much prefer to give her pumped breastmilk that’s been fortified with whatever else she needs, but apparently, there are no options available for fortifying breastmilk for a toddler.

For me, this is another instance where standard cancer treatment doesn’t always account for the fact that babies get cancer, too. Evie is immunocompromised, and the science behind breastmilk's immune-boosting benefits is clear. If we have to tube feed her anything, there should be an option to give her the food nature made just for her. Especially since she’s much more likely to keep it down.

It goes further than that, though. Tube feeding Evie a synthetic protein shake is likely to kill her appetite for breastmilk and tank my supplies. Meaning she’ll get even less immune-boosting breastmilk over time. Please pray for her to start eating again soon. Maybe it’ll only be for a few days until her tummy is better. 🤞🏻

Today is the seventeenth day of our current (final!) admission. It’s wearing on our whole family, and we’re anxious to get home. Please pray for peace. This is hard. We’ve been living out of suitcases and in and out of the hospital for over a year now. We can’t wait for the day when we can finally live as a family of four for good. ❤️

Thanks, everyone. 🙏🏻

06/03/2026

DI day 43: Today has been a rough chemo day. Evie had to have both vincristine and cal-peg. Peg is always stressful. It has a high chance of allergic reaction, and the infusion takes place over a few hours while Evie is monitored closely the whole time. We had a scary moment before the infusion even began when Evie’s oxygen levels began to dip. I was panicking, but thankfully, they went back to normal before we started chemo.

Our nurse prayed with us before the infusion began, and Evie tolerated it once again without a serious reaction! 🙌🏻

Evie’s still not feeling great, though. She’s sleepy and fussy. She’s also still having diarrhea. The GI team came by to check her out today, and they’ve ordered some tests to see what may be going on. It’s strange, since Evie has no fever, no belly pain or any other signs of illness. Hopefully, all the tests will come back negative, and we’ll just treat the symptoms.

Evie’s ANC is dropping rapidly now and is hovering just above zero. She’s also losing her appetite for anything other than breastmilk, which is keeping her hydrated while we try to get additional calories into her.

In spite of it all, in true Evie fashion, she still had some fun today with a little pretend picnic with her nurses. ❤️

Please keep praying for us to get Evie feeling better and for no serious side effects from the chemo.

06/02/2026

Today marks one year since we got the call from Dr. Perry that changed all our lives. I’ll never forget that day, and just how normal it was. Until it wasn’t. I’d woken up that morning excited to see how much Evie had grown since her one-month check-up. I wasn’t even worried when I saw a few drops of blood in the diaper I changed as we left the house. But the Lord spoke to me more clearly than He ever has in that moment.

“Take that with you.”

My heart hurts now when I think back to that appointment. I sat in the room happily playing with Evie as Dr. Perry took the diaper for testing and then came back and asked for a CBC. It never occurred to me that there was a real problem. Other than the diaper, Evie had almost no symptoms. She’d never been sick, never run a fever. Her lymph nodes weren’t even swollen. She was a little more fussy than most babies, but that was really it. Later, we’d learn that the fussiness was because her bones were hurting.

The drive to the hospital took a million years, and we barely spoke the entire time. When we got to the emergency room, Evie was stuck four times to get an IV for lab work. It was horrific. We held her while she screamed, choking back our own tears. It brought me right back to being a scared 25-year-old new mom, holding our sweet Allyson while she, too, screamed as she was stuck repeatedly. The final nurse to try had tears in his eyes as he finally got the IV in place.

It may have been minutes or even hours later when the oncologist walked in to tell us that Evie definitely had leukemia. The room seemed to grow dark as we clutched at our little baby while the oncologist gave us the news. I remember him saying, “I know this is the worst moment of your life, but I want you to know that there’s hope.”

But all I could think in that moment was that he was wrong. That this couldn’t possibly be the worst moment of my life. The worst moment of my life had already happened. Nearly 14 years ago. When our newborn Allyson was taken from my arms mere seconds after she was born. This wasn’t happening.

It couldn’t be happening.

The next morning was surreal. We woke up to realize that the nightmare was actually real, and we were still living in it. In my soul, I felt tainted and broken. Why were both of my girls born with life-threatening conditions? Allyson’s diagnosis with Pierre Robin Sequence was awful. It rocked our family and shattered our world in ways that took years to heal from. And even still, her battle continues. She’s had 19 surgeries and faces more. But cancer is a different thing altogether.

It was late that afternoon before we finally got the full test results. There was some good news. Evie had B-cell Acute Lymphoblastic Leukemia, the most treatable type of leukemia. Dr. Kutny, Evie’s primary oncologist, came in right away with paperwork detailing a clinical trial for which Evie was a perfect candidate. We were still in shock and signed the forms without really even reading them.

Evie had to have a bone marrow biopsy and a central line placed before we were officially transferred to the eighth floor. The trauma we’d carried from Allyson’s health struggles was front and center as we handed our new baby off to surgery. It never gets easier, and now here we were again. I even recognized the nurse anesthetist from some of Allyson’s past surgeries. That was both comforting and heartbreaking. The biopsy revealed that Evie’s bone marrow was already 94% cancer cells. She had almost no healthy bone marrow left.

The news began to improve after that. When we finally sat down to read Evie’s clinical trial, we noticed the note at the bottom of the page: Protocol version 03/25/2025. Evie’s treatment protocol was published the day she was born!!! The Lord hadn’t abandoned us. He had a plan! There had always been a plan. We knew in that moment that, even though the road ahead of us was long, the Lord was going to save our baby.

Days later, Dr. Kutny came nearly bursting to give us more good news. Evie’s KMT2A gene was normal! He explained to us that KMT2A rearrangements are present in around 80% of infant leukemias, and it makes infants far more prone to relapse. But Evie’s chances would more closely resemble the cure rate in older kids. The next day, Evie had her first lumbar puncture, and we were relieved to discover that the cancer had not spread to her spinal fluid.

Induction, Evie’s first chemo cycle, was absolute hell. She was miserable, in pain and scared. We were terrified the whole time. We prayed so hard that our little baby wouldn’t give up. That she’d know more from life than this. But Evie proved herself to be an amazing fighter, much like her big sister, over and over again. And we got the best news in the world, only a week after induction ended. Evie was in REMISSION!! The treatment God provided for her was working.

Leukemia treatment is long, and Evie’s chemo is still ongoing. We’ve spent 184 days of the past year living inside Children's Hospital, with our family separated. And treatment won’t officially end until December 22 of next year. But somehow, Evie is still just a happy baby. Despite her age, she’s incredibly strong and refuses to let anything steal her joy. No matter how bad she feels, her light is infectious to everyone around, and it’s amazing to see. The staff on 8 QB have truly become her family, and we are eternally grateful to see the love they have for our baby. It shows in everything they do. We see the Lord’s hands working in every step of Evie’s treatment.

Psalm 100:5: For the Lord is good and his love endures forever; his faithfulness continues through all generations. ❤️🙏🏻

05/30/2026

DI day 39: Evie received her last ever dose of cytarabine this morning! Since embarking on this journey, cytarabine has been the chemo that gave her the worst side effects, so we’re super grateful to be done with it. She’ll continue getting the oral chemo thioguanine until Wednesday, and then she’ll receive vincristine and cal-peg.

The chemo is starting to show its ugly effects on our poor girl. She’s losing her appetite and having some nausea, and we suspect she’s getting mucositis again. This morning, she threw up her NG tube. Which means it had to be replaced. Unfortunately, they had to do it with her awake this time, and it’s always traumatizing for her. 😭

The tube is necessary, though. Since Evie is eating less, we need a backup means of getting food and meds into her.

In spite of it all, Evie refuses to let it get her down. She’s still happy, playing and working hard to learn how to walk. I’m so proud of her strength! ❤️

I’ve been getting a little overwhelmed lately with all this time in the hospital, so Stephen and Allie got a hotel and came up for the whole weekend to spend as much time here as possible. And my lovely sister came and took Allie and me to a movie. I needed that more than I can say. I haven’t set foot outside the hospital since we got here on May 20.

Please keep praying for Evie to keep feeling ok and for her mucositis to not get any worse. 🙏🏻

05/27/2026

DI day 36: Today, Evie begins her last-ever block of cytarabine treatments. 🙌🏻

She’ll have to have that one every day until Saturday, and then that chemo is done for good. And yes, I am celebrating every single “last” this during this hospital stay.

Evie also had her 15th lumbar puncture this morning. She woke up early, wanting to nurse and reached for me, but I wasn’t allowed to feed her before the procedure. It breaks my heart every time. Not feeding your baby feels like a huge breach of their trust, and she’s too little for me to explain why I can’t. It hurts so much to see her hungry and confused about why her mom won’t feed her. 😭

I kept Evie busy this morning by driving her pink car around the halls, and she had a nice visit with Sydney, the therapy dog. The distractions worked, and Evie was first on the schedule this morning, so she wasn’t totally miserable by the time she went back. She even had some fun playing with the sedation team before going to sleep.

The procedure went well, and Evie’s nurse changed her central line dressing and placed an NG tube while she was asleep. Evie’s already annoyed with the tube, but it does make it much easier to get meds in her. Please pray for her to keep it in. We don’t want to go through the process of getting another. 😭

She’s sleepy from the sedation and nauseous too. She’s finally resting now, and I’m hoping she’ll feel better after her nap. ❤️‍🩹

Evie’s still been having some diarrhea, and last night, she had a little bit of blood in her diaper. Seeing blood while changing a diaper is super triggering for us, as that was the first symptom we noticed of Evie’s leukemia. However, Evie’s labs look good, and her team doesn’t think there’s a serious problem. It’s most likely a symptom of either mucositis or a side effect of the IV antibiotics she’s been on for a while now. They think switching to an oral one should help with the bacteria in her gut.

We’re only on the eighth day of Evie’s current admission, and it’s already feeling like we’ve been here forever. Please keep praying for all of us to stay strong and healthy over the next several weeks. 🙏🏻

05/24/2026

DI day 33: Evie’s still feeling good and acting like her usual happy, playful self. She gets a break from her cytarabine until Wednesday, when it starts back, so she’s only getting the oral chemo 6TG today. So far in this cycle, she’s tolerated everything with only minimal side effects. (knock on alllll the wood!). Her hair is still growing, and she’s maintaining her weight.

I’m so relieved she’s feeling good, but my anxiety is on fire. I’m constantly bracing myself for something scary to happen. Or worse, worrying that the chemo isn’t working properly. Please pray for peace.

Crushing Evie’s antibiotic and putting it in food has been working better than giving her the liquid. But that’s only because it’s harder for her to spit it out. She screams and cries for a long time after getting it, and is starting to cry whenever I offer her a spoonful of food. I’m heartbroken that she doesn’t trust the food I offer her anymore, so I talked to her team at rounds this morning about placing an NG tube when Evie gets her lumbar puncture on Wednesday. They agreed that it was a good idea and temporarily switched Evie back to IV antibiotics until then. NG tubes come with their own set of issues, but I’m glad for one less thing to deal with today.

Stephen and Allie are visiting today and will spend the night tonight. Evie’s thrilled to spend time with her whole family, and so am I. With summer starting, we’re all a little sad that our family is spending another summer separated by cancer treatment. But we’re praying this is the last one EVER. I can’t wait until we can finally be a family again, all under the same roof. We’ve got a lot of missed time to make up for.

Please pray for Evie to keep feeling good! 🙏🏻

05/21/2026

DI day 30: Yesterday ended up being a hard day. Between all chemos, the prophylactics and the hydration Evie needed, she ended up being hooked to the IV pole for a solid 12 hours. By the end of it, she was beyond frustrated and irritated at having her movement so restricted. Today is a much easier day, and Evie is back crawling around and getting into everything. ❤️

On top of that, we had to get the nasty antibiotic in her. No matter what I did, she still screamed and spat most of it out. I tried it myself and wanted to vomit immediately. It’s seriously disgusting. We tried crushing a pill version and giving it to her in food, and that got it in her, but only because she wasn’t expecting it. We’ll see what happens with the next dose. 🤞🏻

All of these issues highlight the bigger problem.

Babies shouldn’t get cancer.

Active one-year-olds aren’t meant to be tethered in place. They’re supposed to be exploring their world and learning how to move.

They’re not supposed to have gross medications forced into their mouths multiple times a day.

These medications were never meant for them.

But babies DO get cancer. And they deserve better than this. The medications don’t HAVE to taste disgusting. Maybe the treatments shouldn’t restrict movement to the point that it causes serious developmental delays.

Babies get the crumbs. Cancer research focuses first on adults and then older kids and THEN babies. Treatments available to adults take years to trickle down to babies. And there really aren’t many treatments designed just for kids. Childhood cancer only gets 4% of research funding. Yes, I know that’s because kids usually have better outcomes than adults. But maybe kids need more treatments that don’t affect them long term and aren’t quite so traumatizing.

Seeing the world of childhood cancer firsthand is frustrating as a parent. I’m eternally grateful for the access we have to the treatments we do have and for the first-class medical team taking care of Evie. But I want better for my baby. Every child deserves better than this.

05/20/2026

Delayed Intensification day 29: This.Is.It. 🙌🏻

Our week at home was wonderful. It was so nice to live our normal life for a few days, even if it does make me miss home more than ever before. But this is Evie’s last chemo admission. After this stay, her treatment is outpatient and we can finally live as a family again.

Part 2 begins with another lumbar puncture with chemo, which means we had to fast our sweet baby for hours before the procedure. Since she’s so little, Evie is always first on the schedule, but she was still absolutely miserable by the time she went back.

The procedure went well and the nurses changed Evie’s dressing on her central line while she was asleep. She woke up happy and playful and actually had a great time goofing off in clinic before we went upstairs.

We had a busy afternoon waiting for us when we got to what we hope is our final home on 8 QB, room 807, but she got a little power nap with dad before getting started. 💕

Evie needs an IV IG infusion, which takes a couple hours and will have infusions of cyclophosphamide and cytarabine. She’ll have the oral chemo thioguanine tonight. It’s a lot. 😭

Also, the results from Evie’s GI culture taken during our ER visit this past Sunday came back positive for C.diff bacteria. It’s only positive for the bacteria and not an active infection, but her doctor is switching up her prophylactic antibiotic to try and keep the bacteria from becoming an infection. Unfortunately, the new antibiotic is the nasty-tasting oral one that Evie hates so much. I’m praying I can get it in her this time.

Part 2 of DI involves 22 days of chemo and then count recovery, so we expect to be here for at least a month. I’m praying we’ll be home in time for the Fourth of July. It seems silly really, but Evie spent her first Fourth here. I’d love to spend the second one making memories at home.

Our final planned admission is exciting, but also anxiety inducing. Chemo is brutal, but we have to keep pushing through. Evie needs us to be strong for her as we get through this together.

Please pray for the chemo to do all needs to to kill the cancer while taking it easy on our baby. 💛

05/19/2026

Tomorrow’s the big day.

Evie is scheduled to begin her LAST inpatient treatment cycle. Her remaining active cycle, before beginning maintenance chemo is outpatient. 🥳

This feels huge, exciting and terrifying all at the same time. Evie was diagnosed with leukemia at only 10 weeks old. Since then, we’ve spent 170 days inside Children's, with our family separated from one another. We’ve barely had a chance to live as a family of four under one roof. But we’re eager to find out what it’s like to be home together every night.

The past week at home has been nice, but we did hit a bump in the road on Sunday. Evie had had some vomiting and diarrhea and eventually had a diaper with a few flecks of blood. Bleeding is always a big deal in leukemia kids, so we had to head to the emergency room to get bloodwork. Evie’s CBC actually looked great. Her ANC is over 2200, which is in the normal range for healthy person and well above the 750 threshold needed to begin chemo tomorrow. As long as she’s not still having tummy issues, treatment will begin as scheduled.

Please pray for Evie to get through the rest of this cycle with no major issues. The second half of Delayed Intensification includes many of the same chemo meds that made her so sick during Consolidation. Please pray they’ll take it easy our baby this time.

I have to say thank you again to everyone on this page. We’ve spent much of the past year needing help like never before, but also unsure how to ask or even what to ask for. But every need we’ve had has been met and we are eternally grateful. Thanks so much for loving our sweet baby. 💛

Prayers for Evie: Little Warrior Big Fight

06/07/2026

06/05/2026

06/03/2026

06/02/2026

05/30/2026

05/27/2026

05/24/2026

05/21/2026

05/20/2026

05/19/2026

Address

Website

Alerts

Shortcuts

Share

Category