Liver Warrior: Caitlynn’s Story

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Liver Warrior: Caitlynn’s Story

In 2018, Caitlynn was diagnosed with Autoimmune Hepatitis. After years of procedures and hospital stays, she received a life-saving liver transplant in 2024.

Today, she’s healing, growing, and inspiring everyone around her. This page shares her journey.

12/08/2025

Early morning trip to “Hotel Levine” today.
Her labs have been a little elevated these past few weeks, and of course that’s been weighing on us. This morning she’ll be getting a liver biopsy so the team can take a closer look and make sure everything is still on track.

We’re still holding onto the hope that the bumps in her numbers are just from the stent removal a few weeks back and honestly, that could very well still be the case. The biopsy is just the best way to truly see what’s going on and rule out any rejection.

It’s a tired, chilly morning, but spirits are good. Hoping we can get in, get answers, and get back home to rest.

One day at a time. Always proud of our girl.

11/20/2025

Some of you may know that Cait has been having trouble with her bile duct draining correctly. Over the past year, she’s undergone several procedures to place a stent in her main bile duct because it had become so narrow. That narrowing caused her bile to back up, sending her liver numbers soaring and creating all sorts of other challenges.

Those procedures were tough on her, especially the first one, which required the team to go in through her side and leave external drainage for a few weeks. Honestly, she seemed more uncomfortable during that stretch than she did during the actual transplant.

Yesterday, they removed the stent, and the outcome was nothing short of outstanding. The surgeon was very happy with the results. Her duct has expanded, everything is draining beautifully, and, according to him; “Hopefully you won’t have to see me anymore.” Music to our ears.

In true Cait fashion, she handled everything like a champ. She’s one incredible kid who has somehow managed to gather her own little fan club among the staff. She heckles her parents, tells jokes, spreads joy, and carries a positivity that lifts the spirits of everyone around her.

We’re so grateful for all the love, support, and kindness people have shown Caitlynn throughout this journey and continue to show every day.

And of course, being the foodie she is, Cait celebrated the night before with her choice of dinner: Jinya Ramen. If you love a good bowl of ramen, we highly recommend it. Her face said everything when she caught me recording her.

God is good, one day at a time.

10/28/2025

A little behind on sharing an update, but here’s how Cait has been doing. She was admitted on Wednesday after becoming very dehydrated and was started on fluids and stress antibiotics. By Thursday, she was feeling much better! Since she was admitted with a GI bug, she had to be quarantined to her room, which always puts her in a bit of a bad mood. The good news is that she was released later Friday night.

Saturday morning she seemed to be doing great and even started showing her sassy side again. Unfortunately, by around 3 p.m., she spiked a 103° fever and really crashed. Sunday she slept nearly all day, and most of Monday too. We reached back out to her GI team, they weren’t overly concerned and advised us to stay the course.

Today, she finally seems to be turning a corner, her appetite is back, she’s drinking more fluids, and overall seems to be bouncing back.

It’s that time of year when those bugs make their rounds. As much as we’d love to keep her in a bubble, that’s just not realistic (or healthy!) she needs to build her strength and immunity like any other kid. That said, many of us have loved ones who are a bit more vulnerable, so please be mindful: wash your hands, and if you’re feeling sick, try to avoid socializing until you’re better.

Seriously, though, wash those hands, folks!

10/22/2025

Cait has had a really good stretch these past few months, but something hit her pretty hard Sunday night. She was down for the count on Monday and Tuesday, not eating, unable to keep anything down, and running high fevers. She had labs drawn this morning, and we were called back in to have her admitted.

The good news is her liver numbers look great. The not-so-good news is her kidney function and a few other markers are way off, likely due to dehydration and whatever bug she’s fighting. We’re not exactly sure what she picked up, but we’re hopeful that a short stay will help get her back on track.

It seems like any kind of stomach bug really knocks her down more than most, but we’re taking it one day at a time and trusting her team to help her bounce back soon.

Looks like another stay at Hotel Levine — hopefully a brief one.

On a brighter note, adding a few photos from a couple of weeks ago. Cait had some great days recently, a little Disney on Ice with Make-A-Wish alumni and some Carowinds fun with A Kid Again. We’re so grateful for organizations like these that bring joy and light to Cait and our family right when it’s needed most.

09/23/2025

I wanted to share a quick update on Cait.

Caitlynn has been doing great! She’s easing back into school, high school, no less! It hasn’t been the easiest transition, but she’s making it happen. After being homeschooled for the past year, she really wanted to return for the social interaction.

Her labs, growth, and most other markers are finally falling into place, and without a doubt, she’s fully stepping into her teenage years! That said, she still has a lot to catch up on. Before her transplant, focus, energy, and learning weren’t things she had much of, so this stage is definitely a rebuilding process.

She’s also started physical therapy, which has been an amazing help in strengthening her muscles and rebuilding her overall physical health. We feel it will be a key part of helping her regain strength and confidence in her body.

We are still working through a few lingering health issues. Caitlynn has been experiencing some bone-related challenges, but with treatment, diet changes, and supplements, we’re seeing improvement. One tough spot was her low iron levels, she initially tried daily iron pills, but they were really hard on her stomach. It caused her to miss meals, school, and just left her feeling miserable.

The good news? She switched to IV iron infusions, and they’ve been a game changer! Virtually no side effects, and the energy boost she gets afterward is incredible—it’s like she drank 42 Red Bulls (but much healthier). Today, she’s getting her second infusion and we’re expecting another big energy lift.

All in all, we’re seeing amazing progress, especially considering the big setback she faced earlier this year in February and March. It feels so much better to be here for just a few hours rather than staying in the hospital for weeks at a time.

Thank you to everyone who continues to check in on Cait, encourage her, and lift her spirits. Your support means more than you know.

09/16/2025

Little behind on getting this updated.

What an outstanding and uplifting day with Rogers Park Baptist Church at the Car Show benefiting Caitlynn! Last year, about 15 cars registered—this year, the number grew to nearly 50, with a few Lambos and Porsches making an appearance. The lot was filled with beautiful cars and even more beautiful hearts.

We are so deeply thankful to the folks at Rogers Park for the joy, love, and support they’ve shown Caitlynn and our family over the years. From Pastor Joel to Miss Jeannie and every single person who helped bring this event to life, your generosity and dedication mean more than we can ever put into words. Together, you’ve helped strengthen Caitlynn’s COTA fund and lifted our spirits along the way.

For those who may not know, COTA, the Children’s Organ Transplant Association, works exclusively with transplant families, providing financial and practical support for transplant-related expenses. Because they’re a 501(c)(3), every contribution follows strict federal guidelines, and most importantly, they don’t take a single penny from Caitlynn’s fund. They also partner with hospitals, hotels, and pharmacies nationwide to ease the burden on families. Their team makes things so simple, sometimes all it takes is sending a photo of a bill, and they take care of the rest. Those little breaks can make all the difference during a journey like this.

We are beyond grateful for the blessings and kindness poured out on us, it’s truly humbling. But at the center of it all is Caitlynn: a warrior, a champion, and a young woman whose fight with liver disease has touched countless lives. As Pastor Joel Ervin reminds us, God is good, all the time. And all the time, God is good.

08/10/2025

Caitlyn’s latest procedure went well, her surgeon said the bile duct and expansion looked remarkable. They placed an additional stent, and the hope is that in about 3 months, they can remove them and the duct will function on its own. Next focus: getting her spleen draining better.

She also made it through her first day back at school! It went well overall, but definitely wiped her out. She’s been dealing with some pancreatic discomfort (since they had to work near that area), and let’s just say clear liquids were not her idea of a good time.

We’re now just one week away from our long-awaited vacation, it can’t come soon enough. It’s been 3 years since we’ve had one, and the last time we tried, we all got slammed with COVID. Somehow, Caitlyn cruised through it like a champ while the rest of us (non-immunocompromised, mind you!) got knocked out.

Thanks to everyone for the continued support, one day at a time.

08/06/2025

Caitlynn is having an EGD and ERCP to check on the stent placed in her bile duct. She’s been doing well overall, though like with any journey, some days are better than others.

She had to stop eating around 11 p.m. last night—and if you know Caitlynn, you know being NPO turns her into a ravenous young woman! 😅

It’s going to be a long day, but we’re hopeful the stent is still in good shape and won’t need to be replaced.

This girl has already been through so much and she keeps showing up with strength and determination. And as if today wasn’t enough, tomorrow is her first day of high school.

Two days packed with challenges and milestones—but that’s how fighters do it.

Keep Caitlynn in your thoughts today. 💛

08/05/2025

Caitlynn was invited to an unforgettable evening hosted by Levine Children’s and the amazing team at Church and Union. The restaurant opened its doors, and its kitchens, to a group of little superheroes for a night of hands-on fun, food, and friendship.

The kids got to shadow restaurant staff in whatever role they were curious about, and Caitlynn dove right in with the biggest smile we’ve seen in a long time. From kitchen hustle to front-of-house flair, she was all in.

And the best part? Chocolate milk margaritas (yes, non-alcoholic) and fancy meals for the kids, and a rare chance for us parents to connect, share, and savor a peaceful meal together.

Huge thanks to Levine Children's and Church and Union Charlotte for making nights like this possible, memories like these mean the world!

07/16/2025

It’s been a busy few weeks for Caitlynn! An awesome friend, who just happens to have a professional hairstylist daughter, generously offered to give her a hair makeover to brighten her spirits.

She was so excited… but let’s just say the Halloween hair dye she used months ago didn’t want to leave without a fight! The stylist spent over five hours getting it just right and Caitlynn absolutely loved the results!

Today’s adventure? 🦷 Braces! Due to her liver disease and transplant, Caitlynn’s growth has been delayed, and that’s made room for her teeth a bit tight and painful. But today she begins the journey to give those teeth some breathing room and bring on a brand new smile!

As always, she handles every step with courage and sparkle. ✨

06/22/2025

Happy Birthday Caitlynn! She’s come such a long way. from facing challenges most never see, to standing strong with grace and grit. Through it all, Caitlynn has never stopped shining.

Today wasn’t just a birthday. It was a celebration of resilience, hope, and the incredible young woman she’s becoming.

Here’s to 14 and to a heart that keeps inspiring everyone around her.

Address

Charlotte, NC
28202

Website

https://cota.org/cotaforcaitlynn/

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