Jul 15, 2019 Latest post:
Jun 26, 2020
After being born 8 weeks premature and spending 29 days in the NICU in Sioux Falls, Truman was diagnosed with a tethered spinal cord. At 6 months of age, he had a spinal cord untethering surgery in Omaha which seemed to remedy the situation for the time-being. The doctors told us the cord could always retether, but they were satisfied at the time with the outcome. As time progressed, he hit the milestones he needed to - learned to walk, became potty-trained, etc. In February/March of this year, he lost control of bowel and bladder. As time progressed, his walking and balance gradually got worse. We followed up with all sorts of providers and everyone thought it had to do with his spinal cord situation, but was just a growth spurt and to be expected. In early June, he was no longer able to walk without extreme pain. At that point, we followed up with a facility in St. Paul that seemed to specialize in his spinal cord condition. On June 18, we had another MRI done, and on June 19, the neurosurgeon told us that he had developed what appeared to be a tumor starting about halfway done his back going to the bottom of the spinal cord, with similar cells up the spinal cord and into the brain stem. A follow-up MRI of the brain was done the next day and an exploratory surgery was done on June 21. We were in the hospital for 7 days recovering from surgery and waiting for lab results. Finally, on July 8, we got the lab results back that this is a high-grade primitive, soft tissue sarcoma.