Liver Warrior: Caitlynn’s Story

08/14/2026

A little behind on updating everyone, so here’s where things stand with Cait.

Cait was finally able to break free last Wednesday and come home! After everything she’s been through, it has been so good to have her back home and doing well.

A lot of the test results pointed toward some issues with a medication she has been taking since 2019. It was one of her immunosuppressants, so her doctors decided to take her off of it. The downside is that now we have to keep a close eye on her immune system, since it could potentially start giving her transplanted liver a hard time.

She is still on other anti-rejection medications, so we’re hoping her body adjusts and continues to cooperate.

There are still some things to figure out. She’ll be going back for additional testing soon, and the doctors are discussing possibly putting in a stent near her spleen. Before her transplant, her spleen became enlarged because her liver wasn’t able to move blood through as effectively as it should. Some of that blood was being redirected toward the spleen. After transplant, they expected the spleen to shrink back down, but it hasn’t happened as quickly as they would have liked.

There is a drain near the bottom of the spleen that may need to be enlarged a bit to help things return to more normal function.

So, as usual, one problem and one day at a time.

The good news is that Cait has been doing really well since coming home. She has also started iron infusions. They come with some side effects, but overall, a few days afterward, she feels noticeably better.

We’re taking the wins where we can get them and are incredibly grateful for everyone who continues to check on her, pray for her, send messages, and support our family.

Hopefully, this is just another bump in the road and we can keep moving forward.

08/04/2026

It looks like we’ll be here for a few more days, but we have some encouraging news.

The procedure went great. Compared to her previous scopes, things are looking much better. The doctors did find a few areas that looked abnormal, and they took biopsies so they can get a better understanding of what’s going on. Thankfully, nothing they saw appeared overly alarming, which is a huge relief. Biopsy results for procedures like this typically take a few days, so now we wait.

On a much more fun note, many of you know that Caitlynn is our resident foodie. Today she had the chance to meet celebrity chef Bal Arneson, a previous host of Food Network shows, cookbook author, and more. Since Cait is a huge fan of butter chicken, the two had some fun conversations about food, cooking, and, of course, butter chicken. It was a bright spot in the middle of a hospital stay and definitely put a smile on her face.

Thank you all for continuing to pray, check in, and encourage our family. We’re grateful for every message and every prayer.

07/31/2026

Cait is feeling much better this evening. She’s been on IV antibiotics along with fluids, and we’re definitely starting to see the return of the sass she’s so well known for.

At this point, so many of the nurses, doctors, and staff know her from previous hospital stays, and they genuinely love having her as a patient. She always keeps them on their toes with her quick wit and sense of humor, and somehow manages to make even the hard days a little brighter.

As is pretty standard anytime she’s admitted without a clear cause, she was placed on isolation precautions while they waited for all of her test results. That meant everyone coming into her room was covered head to toe in gowns, masks, gloves, and protective gear. Thankfully, her C. diff test and respiratory panel both came back negative this afternoon, so she was finally able to get out of the room. Being in the hospital is hard enough, but being confined to one room makes it feel even longer.

Right now, it looks like we’ll be here at least through Monday. She’s scheduled for an endoscopy and colonoscopy Monday afternoon so the team can take a closer look and hopefully get some answers. While we’re thankful so many of the tests have come back normal, it’s obvious something still isn’t quite right. If needed, biopsies often provide the best information to help guide the next steps.

Another big win today is that she’s eating again. It’s not much yet, but she’s starting to tolerate some regular food, and we’ll happily celebrate every little step forward.

Our hope is for a short stay, some answers, and to get this sweet girl feeling like herself again and back home where she belongs.

Thank you all so much for the love, prayers, and messages. We truly appreciate everyone who continues to keep Cait in your thoughts.

07/30/2026

Cait’s back at Hotel Levine tonight.

We’re hoping this is more precautionary than anything, but she’s been dealing with some stomach issues for the past few weeks. Her labs and liver numbers have been good, which is reassuring. Still, she just hasn’t felt like herself, nauseous, crampy, and overall pretty crummy.

She was scheduled for an iron infusion today but told us she felt like she needed to be admitted. That’s not something Cait generally asks for, so we knew she was really feeling poorly.

After a quick stop with the GI team, she and Mom headed over to the Children’s ER. They were there from around noon and finally got into a room around 6:30. It’s been a long day for both of them.

So far, her numbers continue to look good. She had a CT scan and we’re waiting to talk with the doctors. Thankfully, nothing appears to be jumping out as an obvious concern on the scan so far.

For tonight, it looks like an overnight stay to keep a close eye on her, give her plenty of fluids, manage the nausea and discomfort, and hopefully get to the bottom of whatever has been kicking her butt these past few weeks.

We’re grateful her liver numbers and labs are looking good, and even more grateful to have such an amazing team taking care of our girl.

Hopefully, a little rest, some fluids, and some answers are all she needs. One day at a time, Cait. We’ve got you. ❤️

06/22/2026

Happy 15th Birthday to this beautiful young lady! 🎉🎂

Fifteen years ago, you entered our lives and have amazed us every day since. Through every challenge and every triumph, you have shown incredible strength, courage, and resilience. We are so proud of the amazing person you have become and excited to see all the wonderful things your future holds.

Please join us in wishing this special girl a very happy 15th birthday!

06/07/2026

06/07/2026

Today we celebrate Caitlynn.

Today we celebrate life.

Two years ago today was Day 0… Caitlynn’s first day after receiving her life-saving liver transplant. It’s hard to believe how far we’ve come since that moment.

Her journey began back in 2018 with something as simple as a funny walk. What started with visits to a pediatric orthopedic specialist and neurologist quickly turned into a week-long hospital stay and a diagnosis that changed our lives forever: autoimmune hepatitis.

From that moment on, we entered a world we never expected. We were cared for by incredible teams at Duke Children’s Hospital and later Levine Children’s Hospital. Through every appointment, setback, and victory, we were surrounded by compassionate doctors, nurses, and staff who became part of our family’s story.

Then came an extraordinary opportunity. Through a partnership between Atrium Health and the University of Pittsburgh Medical Center (UPMC), the nation’s leading pediatric liver transplant program, Caitlynn became the very first patient to go through the program.

Two years ago today, some of the best pediatric liver transplant surgeons and specialists in the country came together from across the United States to give our daughter a second chance at life. They didn’t just perform a transplant, they gave our family hope, more memories, more birthdays, more laughs, and more tomorrows.

But this story isn’t only about Caitlynn.

Today we also honor the donor and donor family whose selfless gift made this possible. In the midst of unimaginable loss, they chose to give life. Because of that decision, our daughter is here thriving today. There are no words that can fully express our gratitude.

We celebrate every donor family who has made that courageous choice, and every transplant recipient who carries the gift of life forward each day. We are forever connected by stories of love, sacrifice, resilience, and hope.

Two years later, Caitlynn continues to amaze us with her strength, determination, and spirit. She is living proof that miracles happen through medicine, generosity, and the incredible people who dedicate their lives to caring for others.

Happy Liver-versary, Caitlynn. We are so proud of you.

05/31/2026

Cait, hard at work…

05/06/2026

Some of you may remember that last year, Caitlynn had the incredible honor of being named the American Liver Foundation Pediatric Liver Champion for Atrium Health and the Liver Life Walk of the Carolinas.

This year, we’re lacing up our walking shoes again, but this time, we’re walking as Cait’s team: Caitlynn’s Warriors!
We would absolutely love to have friends and family join us on this journey. You can learn more about the walk here:
https://liverlifewalk.org/carolinas/

If you’re interested in joining Caitlynn’s team, or supporting the American Liver Foundation, donations can be made directly to Caitlynn’s Warriors here:
http://engdr.co/6-t16610

As always, thank you for your continued love, support, and encouragement, it truly means the world to us.