Cece’s Story

Site created on March 3, 2022

Until February 25, 2022 we were excitedly expecting our 4th child via a very uneventful pregnancy. But our sonogram that day changed everything as we were told our baby had a rare heart condition called Ebstein’s Anomaly and would not survive but maybe a few minutes. That day we found out she was a girl, and named her Cecilia Marie so we could pray for her by name during whatever time we had left with her.
Cardiologists at the Children’s Hospital in Peoria gave us at least some hope, and so we spent the next several months traveling to Peoria twice every week having in-utero echocardiograms. During Cece’s May 19th echo, her heart rate had doubled and so we delivered her via C-section just shy of 36 weeks, again being told she would likely not survive.
But she kept surprising everyone and went on to have open heart surgery at 4 days old and a pacemaker implanted at 3 months old.❤️💙
Her 3rd surgery was to have a Gtube placed for feeds. During that scan in preparation for surgery, a cancerous lesion called hepatoblastoma was found on her liver. 💚
She’s battling two very separate, very rare conditions. She spent the first year of her life in the pediatric ICU.
She finally came home for the first time in May of 2023 just shy of her first birthday. She’s had several hospitalizations since for chemo treatments and various sicknesses.
On October 5, Cece rang the bell at St. Jude signifying her being done with chemo! She’s officially in remission and has quarterly scans to keep an eye on it.
She had a Glenn procedure on her heart in January of 2023 and her heart is stable right now. She will likely need more heart repairs at some point, but it’s holding strong for now.
Her entire life has been a delicate dance of treating one part of her just enough to improve it without adversely affecting another part. That dance has only grown more complicated. But she’s still dancing.💃
We created this site so you can join us on her journey and are using it to keep family and friends updated in one place. We appreciate your prayers!

Newest Update

March 31, 2024

Journal entry by Marqui Krone —

 Spring Break was last week and we road-tripped down to Florida. Cece got to experience the beach for the first time! 🏖️ She was such a trooper and “along for the ride” of pool days and other adventures. On our last day, she woke with a fever and cough. She slept almost the entirety of our 14 hour drive home (while her brother manned the oxygen tank from the back seat)😅. She was needing more and more oxygen throughout the drive so we called her doctors and they wanted us to bring her in. We were home just long enough to unpack and then headed to the hospital and admitted her late Friday night. This time she tested positive for both Parainfluenza (another respiratory bug) and also Norovirus (a tummy bug).
She held her own pretty well, just needing a little extra help at night with her coughing fits. She was feeling much better Sunday so we got to bring her home that afternoon (straight to family Easter)! This was our shortest hospital stay on record. 👏
This was also the 2nd year in a row our big kids woke up at the Ronald McDonald House on Easter morning. And to all who donate to that organization- thank you! 🥹 We left the hospital late Saturday night and arrived at the Ronald McDonald House to find all kinds of Easter gifts/toys for the kids (both last year in Cincinnati and this year in Peoria) which was so special. Maybe next year we’ll all wake up at home together Easter morning. But even if we don’t, we’ll still be celebrating that Jesus is risen and gives us hope no matter what tomorrow holds. Each of our lives is a mist in lieu of eternity, and we’re experiencing knowing just what a gift each day really is. 
Cece’s liver scans were also supposed to be this week, but her anesthesiologist wasn’t comfortable putting her under while she’s sick. He said he wanted her healthy 4-6 weeks. We laughed and said that’s never happened before. So he and her oncologist will work together on a compromised time frame to get those done soon.
Thank you for your prayers!
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