top of page
347253382_3460401937547838_1389728229304000973_n.jpg
Jaxan's Story

(Updated 8/18/2023)

        Jaxan is an 8 year old boy from Pensacola, Florida who fought and beat the unfathomable, brain cancer. He “HAD” a CNS Embryonal Tumor. He experienced his first seizure, which lasted approximately 30 minutes on the night of January 25, 2021. Ambulance paramedics arrived, injected Ativan and he was rushed to Ascension Sacred Heart Hospital. They immediately did a CT scan which showed a mass in his brain and an MRI the next morning of Jan 26th clearly showing the 6.2cm brain tumor. The neurosurgeon and his parents thought that it was benign since he had no deficits and perhaps it has been growing since birth. On February 9th, Dr. Perez at Sacred Heart Hospital, spent almost 14 hours skillfully resecting his brain tumor. He got 98% of it and cauterized the remaining cells that he couldn't remove from large arteries which could cause massive bleeding. He also came out of surgery with no deficits and for that everyone was so grateful! Before they brought Jaxan to his room after surgery, his parents were informed by Dr. Augustus Perez that the tumor looked to be very aggressive/malignant, but that didn't really sink in to his Dad and Mom, since they were hyper focused on the gratefulness that he survived surgery. They did immense research and with the help of their local oncology team at Sacred Heart Hospital and friend Cindi Bonner with Rally Pensacola, they found a treatment plan to put his cancer into remission and had called Children's of Alabama in Birmingham their second home for 8 months in 2021. Their lives changed forever, yet the fighting drive in the three of them began. Jaxan completed the HeadStart4 clinical trial Consolidation phase in October of 2021 after a “Complete Response” to the Introduction phase, which began in March of 2021. You can read more about the trial by clicking here. He completed 6 cycles of high dose chemotherapy which were vincristine, cisplatin, cyclophosphamide, etoposide, high-dose methotrexate, Carboplatin, and thiotepa, He got a week break and then had 6 weeks of proton radiation on his brain and spine. He has MRI’s every 3 months to make sure his scans are clear of cancer. Thankfully, with the grace of God and his amazing healthcare team for keeping a super close eye on him, Jaxan responded very well to treatment. While 2021 was a challenging year for him and his parents, they are so grateful for Dr. Dhall, Dr. Haines, Marla Thompson, NP and the incredible Children's of Alabama oncology team of therapists and nurses.

        From his harsh treatments, his endocrine system was damaged. In May 2023 Jaxan was diagnosed with having hypothyroidism, adrenal insufficiency, and low growth hormones. He takes daily medications to combat the hypothyroidism and adrenal insufficiency. We are incorporating a high protein and nutritious diet, daily vitamins and minerals in hopes that he continues to develop physically, cognitively and emotionally on track with his peers. We will NOT be injecting him with synthetic growth hormones, as prescribed, because the "increased risk of causing a neoplasm in childhood cancer survivors, in particular patients treated with radiation to the head for their first neoplasm." You can read more about that by clicking here. Nonetheless, he doesn't mind taking his medicine and he is a healthy 77 lbs. today (8/18/2023) He’s incredibly social and creative. He can spend hours making things out of anything he finds. He doesn’t like throwing anything away! He loves all genres of music and can sing lyrics to almost any song, but doesn’t always know what the day of the week is. He LIVES in the moment. Such a free-spirit and some people say he’s an old soul. His favorite activity is playing with his friends who he loves dearly. He is also awesome at making Lego creations. I enjoy seeing what he creates He’s not exactly sure what he wants to be when he grows up. Sometimes it’s a builder, or a scientist, but today he said a Police Officer. He looks forward to living on a catamaran with Mom and Dad. 

        Jaxan is now a proud second grader at Creative Learning Academy in Pensacola, FL. His school is super supportive! They have helped sell yellow/gold t-shirts (designed by one of his sweet friends) to raise funds for Jaxan early in his treatment and helped sell Captain Jaxan t-shirts to raise money for Rally Foundation for Childhood Cancer Research in 2021. In September, his school continues to honor him to help raise awareness and funds for Rally Foundation for Childhood Cancer Research during Childhood Cancer Awareness Month. In September 2022 CLA did a 4 Quarters 4 Research drive where the CLA graciously donated any change and money to go towards much needed research, thus providing better treatment for the children battling cancer. Thank you to everyone for your donations! This September 2023 Jaxan will be selling sweatshirts with the funds being raised going directly to Rally Foundation.

        We are so grateful for everyone's support, prayers, kind deeds done when he was in treatment as well as reaching out to him after. His mom and dad advocate because there needs to be more than 4% of funds being allocated for pediatric cancer research so that one day there WILL BE a cure. Programs like Rally Foundation exist because they have to help make up the difference to fund more than that because less than 4% is not ok. Our kids deserve better!

#JaxanStrong

Jaxan with Mrs. Ball and his Kindergarten class at Creative Learning Academy. Dragon Strong All Day Long!!! We love you all!
bottom of page