Fund Childhood Cancer Research in Honor of Rally Kid Jaxan
Fund Childhood Cancer Research in Honor of Rally Kid Jaxan
Jaxan’s Cancer Journey
Jaxan is an 8-year-old resilient boy from Pensacola, Florida who fought his CNS Embryonal Brain cancer into remission. At the age of 6, he experienced his first seizure, which lasted approximately 30 minutes on the night of January 25, 2021. Ambulance paramedics arrived, controlled his seizure and he was rushed to the hospital.
They immediately did a CT scan which showed a mass in his brain and an MRI was conducted the next morning of Jan 26th clearly showing the 6.2cm brain tumor. The neurosurgeon and his parents agreed to wait a few weeks to remove it, hoping it was benign since he had no deficits and perhaps it had been growing since birth.
On February 9th, Dr. Augustus Perez at Sacred Heart Hospital, spent almost 14 hours skillfully resecting his brain tumor. He got 98% of it and pathology came back two weeks later confirming the worst. It was an aggressive WHO grade IV brain cancer that must be treated so that the remaining cells would not grow back. His parents did immense research and with the help of their local oncology team at Sacred Heart Hospital and friend Cindi Bonner with Rally Gulf Coast, they found a treatment plan. Jaxan’s family called Children’s of Alabama in Birmingham, Alabama their second home for 8 months in 2021.
He 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. He completed 6 cycles of high dose chemotherapy which were vincristine, cisplatin, cyclophosphamide, etoposide, high-dose methotrexate, carboplatin, and thiotepa. Then, he had 6 weeks of craniospinal proton radiation at UAB Proton Center. Jaxan has MRI’s every 3 months to make sure his scans are clear of cancer. While 2021 was a challenging year for him and his parents, they are so grateful for the attentive care of Dr. Girish 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, and he demonstrates cognitive difficulties with aspects of executive functions, attention, and processing speed. 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, along with a nutritious, high protein diet, daily vitamins, and minerals in hopes that he continues to develop physically, cognitively, and emotionally on track with his peers.
He is a healthy 77 lbs. and is incredibly social, creative, curious and a tinkerer by nature. He can spend hours making things out of anything he finds. He loves all genres of music and can sing lyrics to almost any song. Jaxan is a free spirit, often living in the moment and some people say he is an old soul. His favorite activities are playing with his friends, building Lego creations, and boating with his parents. While he is not exactly sure what he wants to be when he grows up, he’s considered being a police officer, a scientist, or a builder.
Currently, Jaxan is a proud second grader at Creative Learning Academy in Pensacola, FL. His school is super supportive! They have helped sell yellow/gold t-shirts with an anchor (designed by a CLA student) to raise funds for Jaxan early in his treatment and helped
sell Captain Jaxan t-shirts to raise funds 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 during Childhood Cancer Awareness Month.
In 2022, CLA did a 4 Quarters 4 Research drive where the CLA community graciously donated any change and money to go towards much needed research for the children battling cancer. This September, Jaxan is selling Captain Jaxan long-sleeved shirts where the donations will help fund the mission of Rally Foundation for Childhood Cancer Research.
With the attentive care of his healthcare providers, the thoughtful support of his school community, and compassionate love from his friends and family, his parents are hopeful that Jaxan will succeed to his full potential. Since seeing firsthand the effects of the harsh treatments, more research is needed to help offer better treatment with less long-term side effects for children. His parents 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 must help make up the difference to fund more than that because less than 4% is not ok. Our kids deserve better! Thank you to all our supporters!