Dakota was born on July 8, 2020, a healthy baby boy. His parents were overjoyed to welcome him into the world, even though the global pandemic was in full swing. They were able to spend some quality time with their daughter before she became a big sister.
Dakota's development was on track until he was about 3 months old. At that point, his parents noticed a slight twitch in his eyes when he looked to the side. He also seemed to be having a hard time holding his head up, and he was vomiting in the morning after his first feed of the day.
Dakota's parents took him to the pediatrician, who referred them to a neurologist. The neurologist performed an EEG but didn't see anything irregular. However, he was concerned that Dakota's fontanelle was not soft, and that Dakota was not reacting the way that he should when he moved his hand towards his face. He immediately sent Dakota to the ER for an MRI.
The MRI revealed a blockage in Dakota's cerebral spinal fluid. The neurosurgeon performed surgery to put in an external shunt to relieve the pressure. The MRI also confirmed that there was a tumor at the base of Dakota's brain. The neurosurgeon told Dakota's parents that it was very likely that he had ATRT, but they wouldn't know for sure until they could remove the tumor and send it off for pathology.
The next day, Dakota underwent surgery to remove the tumor. The surgeons were able to remove 80% of the tumor, but they noticed that it was starting to spread to the spine. Dakota spent 19 days in the PICU, where he was diagnosed with ATRT on October 14, 2020. His chemotherapy began just two weeks after he was first admitted to the hospital.
Dakota completed three cycles of chemotherapy as well as stem cell rescue (Sept 2021).
By July 2021, his MRI reported no evidence of disease. Unfortunately, Dakota’s 6 month scan reported a small spot where the original tumor was located, and by the end of May (2022) the tumor had doubled in size since his previous scan.
At that point, surgery and traditional chemotherapy here no longer an option. Dakota’s family sought compassionate care and enjoyed time together. Dakota visited the beach and enjoyed dipping his toes in the water for the first time.
Dakota is a vibrant little boy who passed away on July 4th in his mommy's arms surrounded by love. He is a hero and a fighter, and endured countless procedures, surgeries and treatments - more than most people endure in a lifetime. He has also seen complications including illness, infections and blood clots.
He endured many setbacks and challenges throughout the course of his treatment, but he always faced everything with courage and the best smile. In his short time on Earth he had an impact on everyone he came in contact with, even those he never met.