Empowering Hope

Raines was born on December 4, 2021. On December 1, 2022, three days before Raines' first birthday, he was diagnosed with Bilateral Retinoblastoma at the Duke Eye Center in Durham, North Carolina. Bilateral Retinoblastoma is essentially cancer that grows on the retina in both eyes, and is caused by a genetic mutation commonly called RB1. Raines initially did six rounds of intravenous chemotherapy followed by three rounds of intra-arterial chemotherapy at Duke Children's Hospital. He also had injections of chemotherapy drugs directly into his right eye intermittently during that time at the Duke Eye Center. As of August 2023, the tumors had regressed and were no longer active, however, Raines was blind in his right eye.  

 

Unfortunately, about three months later, in the beginning of November, 2023, Raines stopped walking and using the bathroom.  We went to the ED at Duke and got the horrifying news that Raines' cancer metastasized to his spinal fluid. His brain and his spinal cord were covered in cancerous tumors. He was very ill and could not walk.  He began a new protocol of high dose chemotherapy, which involved four rounds of intravenous chemotherapy, followed by a stem cell transplant.  On New Years Eve of 2023, Raines began walking again independently.  It was a miracle.  Raines spent 7 weeks inpatient, from February to April of 2024, for his stem cell transplant. 

 

Raines recovered well and quickly from his stem cell transplant, and once again we had three wonderful months.  Unfortunately, Raines’ three month follow-up MRI, in late July of 2024, revealed 5 or 6 new tumors on his brain.  This time he was a-symptomatic, up until about 10 days before he died.  We did more Chemotherapy treatments, however, unfortunately, Raines’ disease seemed to be more chemo-resistant by this point, and there were no clinical trials available for his kind of Metastatic Retinoblastoma.  Raines' doctor told us, "Raines is ahead of medicine." Raines died on October 2, 2024.  He lived for 1033 days, 1 hour and 12 minutes. Raines donated his eyes, brain, spine, and other tissue for pediatric cancer research.

 

When he grew up Raines wanted to be a mail truck, or, he would say, that he might be an excavator.  He would tell you that he was a genius, and he could say his ABC’s, count to 20, and spell his own name.  He loved the garden, picking tomatoes, bell peppers and squash, and could identify oregano, rosemary, mint and basil by smell.  Raines was filled with joy, despite his suffering, he was highly intelligent, empathetic and kind. Often, during the course of his treatments - which were intense, we would hear him ask “You good, mama?” and “You good, Daddy?” Raines was grateful for life, and he would start each day with a walk and when we would get outside, he would say, “It’s a beautiful day.”