Captain Jaxan - Cruising The Clear Horizon

Some moments stay with you forever. 💙

Watching Jaxan proudly leave his handprint alongside Dr. Dhall’s was one of those moments. Four years ago, we were praying for a miracle. Today, we’re celebrating hope—and a future made possible by God’s grace, incredible doctors, and pediatric cancer research.

I was so proud of Craig for sharing our family’s story and reminding everyone why research matters. Behind every clinical trial and every grant is a child and a family praying for more time.

Dr. Dhall, thank you for your compassion, your brilliance, and your unwavering commitment to children like Jaxan. We are forever grateful for the care you gave our son through the Head Start 4 clinical trial and for the hope you continue to give so many families.

Congratulations on receiving the $100,000 Hyundai Hope On Wheels grant. Thank you, Hyundai Hope On Wheels, for investing in research that gives children more birthdays, more memories, and brighter futures.

Research saves lives. Our family is living proof. 💙🎗️

Thankful today and every day — for God’s goodness, for second chances, and for all the joy this year brought. Happy Thanksgiving from our little warrior!

💙 A Heartfelt Thank You from Our Family 💙

We want to send a huge thank you to Jaxan’s former classmates — now fourth graders at Creative Learning Academy — for the incredibly thoughtful Get Well Cards they sent his way. Each one was written in beautiful cursive, filled with kind words and colorful drawings. Jaxan read all 30 of them and felt so loved and remembered.

He truly misses his friends and especially his past teachers at CLA. This past month has been challenging, as he began having seizures again. After several medication changes, we think we’ve finally found the right anti-seizure medicine and dosage. Thankfully, his recent MRI was clear — showing only gliosis (scar tissue). Neurology believes these changes may be connected to growth and hormones, but we’re grateful for every bit of stability and progress.

Thank you, CLA, for continuing to surround Jaxan with love and encouragement. Your kindness and compassion mean more than words can express. 💛

— The Jernigan Family

Jaxan is back home now ❤️❤️❤️

Jaxan has been seizure free for 24 hours 🙌 he is now on Vimpat/Keppra combo. We hope that he’s discharged this afternoon or maybe tomorrow.

Thank you for your loving, kind and encouraging comments, prayers and for reaching out to me. ❤️

Good morning ☀️ Sun is shining here in Birmingham and it’s going to be a good day. One day closer to getting answers for Jaxan and onto the right medication and dosage for his seizures. They DID come in last night from 2:30-3:30AM and placed the EEG lines and set up his Video EEG machine. He woke up at 7:30 and within ten minutes had his first non-generalized focal absent seizure for about 1.5 min -2 min. Some nurses got to see it first hand and one asked him questions. Such as, what is his name and can you count to ten and he couldn’t until he came out of it. I had to press a button so the neurology team can see what sparks the seizures and how his brain waves react. He will get his breakfast soon and he’s playing with play doh at the moment while watching the Minecraft movie ❤️ We got to call his awesome daddy and get to see him and his doggy Charley on FaceTime. I hear them rounding outside his door right now and about to walk in.

Hey 👋 thank you all for your prayers for Jaxan. It’s midnight now. We are in a room on the 10th floor and he’s sleeping peacefully. They started his new anti-seizure med orally and will do an IV tomorrow. There’s talks of someone coming into his room and starting an EEG tonight. That means, they want to wake him up and start putting the wires on his head. Why now?!?!! I’m asking and really hoping they will work with me and do it in the morning or at least let him sleep for a good chunk of time. I know we are in good hands and only want what’s best for him. I am hopeful they will find the right medication and dosage for him to stop having his absent, focal seizures. We are SUPER grateful for his clear scans this week 🙏 just wanted to update you all since he has been doing well, up until the last month. In my opinion, the scar tissue is a side effect of the radiation treatment to his tumor bed. This is causing not only seizures, but cognitive issues, behavioral and fatigue. Will update everyone as his hospital stay progresses. ❤️

Update on Jaxan 💛
We’re back at Children's of Alabama, and while it didn’t come as a complete surprise, the past few weeks have been a whirlwind. Out of nowhere, Jaxan began having seizures and behavioral plus cognitive changes. He hasn’t had a seizure since 2021—during his brain cancer journey—so this has been tough to see.

Two weeks ago, his anti-seizure meds were doubled, but the seizures continued. I pushed for a 24-hour EEG and his oncology team ordered a brain MRI. We drove up this week for both tests. The good news—no tumor recurrence or brain necrosis! 🙌 What the MRI did show was some gliosis (scar tissue) from prior radiation, which explains some of his challenges.

Yesterday, his neurologist called with results: the EEG confirmed multiple focal seizures coming from his left frontal and temporal lobes. We were asked to bring him in today to start a new anti-seizure medication through IV while they monitor him closely.

Please keep our boy in your prayers—for healing, seizure control, and peace. Through it all, Jaxan is in great spirits and, as always, finding ways to make the best of our hospital stay. 💛✨

Yesterday, childhood cancer organizations and advocates from across Alabama gathered for the official signing of the Governor’s Childhood Cancer Awareness Month Proclamation.

Craig, Jaxan, and I were honored to represent Rally Foundation, since many of their team members were away at CureFest in D.C. Representatives from A-Team Ministries and Smile-A-Mile were also in attendance—two Birmingham-based organizations that played an important role in supporting Jaxan during treatment. After treatment, Jaxan’s favorite week long summer camp has been Camp Rapahope, who also had representatives there.

A-Team Ministries provided us with a Home-Away-From-Home apartment while Jaxan underwent 30 days of brain and spine radiation at the UAB Proton Center. Smile-A-Mile brought joy into that season with arts and crafts, toys, and fun events for Jaxan throughout the year. We also got to meet Jeff Brooks, founder of The Taylor Brooks Foundation and Co-Founder Hailey Adams from H.U.G.S 4 Childhood Cancer.

It was so special to reconnect with them again and to stand together for kids fighting cancer and their families.

Jaxan is almost 4 years remission (11/18) and we look forward to celebrating five years when we can call him a cancer survivor 🙌
Smile-A-Mile Rally Foundation for Childhood Cancer Research aTeam Ministries Rapahope