About Jeremiah's Legacy

On September 5, 2024 our healthy 6 year old son Jeremiah came home from school with left sided facial paralysis. By the time we made it to our local Children's Hospital in Columbia SC roughly 30 minutes later he had developed a right sided gait, later that evening he was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG).  He was discharged from the hospital a few days later, then we made our way to Children's Hospital of Atlanta for consultations. After those consultations we made the decision that St Jude in Memphis, Tn was the best option for our family and we were not wrong!! We made it to Memphis on 9/15/24 and hit the ground running with appointments. He had a brain biopsy on 9/18/24 that later confirmed the H3K27M mutation of DIPG. At this point in Jeremiah's battle he was gaining weight from steroids like crazy. This effected his ability to move even more than initially. 

With DIPG all the only option is clinical trials, no proven cure. As parents you are given all these options of clinical trials in hopes you pick the right one for your child. We looked over every trial offered to us, we looked at every pro and every con. We chose an oral chemo trial that consisted of 1 dose every week for 8 weeks this started a few days after his first of thirty radiation treatments. 

We were so proud of him, he handled treatment so well with very minimal side effects. We knew deep down we made the right decision with the trial we chose and the hospital we chose. We were just enjoying life and every second we had with him, we knew how unpredictable this tumor was. On 12/9/24 he had his post radiation MRI we KNEW we would get positive results because he was doing so well!! Boy were we wrong we got results that he now had Leptomenegial metastasis which was a spread of the cancer into his brain...he went from one tumor to now 3 in his brain. We were told it was more than likely in his spine also. We went for a spine MRI on 12/12/24 and yes it was in his spine also. We were given 2-2.5 more months with our boy. 

We were sent home on hospice and to squeeze a lifetime of memories into the time we had left with him. His case was submitted to the national tumor board and he was eligible for one trial in the entire country. We were set to get further instructions after the holidays. Unfortunately our boy was never given anymore options as he started to decline very quickly. on 1/1/25 he completed his battle here on earth and is now cancer free having the best time in heaven.