Who is Jaxson?
The face behind JasxonStrong
Diagnosed with DIPG: 3/16/24

She was just shy of 2 years old when doctors at CHOP diagnosed her with stage 4 (high risk) neuroblastoma with a tumor invading the empty space between her heart and spine. Upfront treatment included 5 rounds of chemotherapy, a resection surgery to remove the tumor, 2 stem cell transplants, 12 rounds of proton radiation and ending with 6 rounds of immunotherapy. Though she lost a great deal of her hearing from all the chemotherapy drugs she was subject to wearing hearing aids the rest of her life, she was very healthy and living life as normal. Unfortunately, 2 years into remission, she relapsed. In one last attempt for long-term survival she went through 3 rounds of Chemotherapy/immunotherapy combo, and many additional weeks of proton radiation. To no avail, the tumor paralyzed her from the waist down and she earned her angel wings on June 23, 2023.

Gavin is forever 16 and was a brave warrior, a ball of energy, a selfless lover of people, a passionate car enthusiast, but most important to Gavin was spending time with his family, whom he loved dearly

At the young age of 3, Layla was diagnosed with DIPG after showing basic symptoms. Started with crossing of her eyes, then falling. When her speech became slurred, and she began drooling her mom decided to take her to the emergency room where after receiving a catscan her mom was told she needed to be transferred as they found a tumor intertwined with her brainstem. She was transferred to Memorial Sloan Kettering Hospital in NY. They performed an MRI and confirmed that her tumor was in fact DIPG and the prognosis was a timeline of 3 months.

​With great faith in God and believing that he is bigger than cancer, started her treatment of radiation and clinical trials. There she lost her battle and became a beautiful angel in the sky at just 4 years old. However, Layla was able to fight 1 year and 1 month longer than her prognosis given by her physician team

Rydder is forever 8 years old. He loved his family and brother. He loved church and he loved being a wild child. He always loved to help and was such an amazing son

He was a wonderful big brother to his younger siblings.

He loved to read books especially the Dogman series and Captain Underpants series. We had started reading Harry Potter when he was diagnosed. Keaton loved Marvel Superheros, especially Captain America and Spiderman. Most of all he was a caring, loving boy who loved jokes and a good laugh. He battled courageously and still laughed until the end. He loved God and told us that he was going to meet Jesus by flying to heaven on a red rocket.

She was the most amazing little girl with an infectious sense of humor. She was adored by her parents and loved by so many. She loved sports, kids youtube, and adored her parents and puppies: Coco Junior and Teddy. She passed peacefully at home in her parents' arms and her puppies right by her side. She was always in control even when we didn't know it. She will never be forgotten

He loved to swim. The minute he walked in his home he was gearing down to the backyard to jump in his pool. His Zest for life was the most beautiful thing. He loved family and friends and wanted to be with them as much as possible. He always made sure all were happy, having fun and feeling loved. There wasnt a heart that he couldn't melt. His eyes so full of love and a laugh so contagious. He was passionate about school and didnt miss anydays even through his 40 rounds of radiation. He loved to go to the Oilers games and hang out with Hunter and players. His favorite chant was " Lets go Oilers, Calgary sucks"! He loved his siblings tenderly.

Karter shared his journey with DIPG and we want to continue to do this and bring as much awareness a we can to this horrible brain cancer that keeps stealing these innocent babies, leaving behind broken parents. Please tell everyone you know about chilhood brain cancer and DIPG.

Paige was diagnosed with a brain tumor deep in her left temporal lobe on March 30th 2024 at age 7, her primary lobe, after suffering a focal seizure. Up until 2 days before her diagnosis she was an extreme athlete - with competitive gymnastics & ninja warrior practices totaling 17 hours a week. She loves to talk and tell people about her love for snowboarding, mountain biking, sailing, surfing, skateboarding, swimming & diving. Tumor resection surgery on April 16th 2024 was successful, removing 99% of her tumor, but left her with the inability to speak or move her right side. She went to intense in patient rehab for 2.5 months & discharged talking, walking, and able to raise her arm. She is learning how to adapt to life as a hemiparesis person while working hard in out-patient therapy to regain more movement. Her tumor will be monitored with scans every 3 months. We now help Boston Children’s Hospital fundraise to start the first FGFR pre clinical trial for pediatric brain tumors to help find an inhibitor - research starts this year, 2024!