On April 26, 2013, Mack was diagnosed with an intramedullary spinal cord tumor. Our family lived in Chicago at the time, but elected to travel to Johns Hopkins Hospital in Baltimore to receive care from a surgeon who specializes in this particular type of tumor. The surgery was performed the next week and considered a success with 95-98% of the tumor being resected leading to recovered strength in his left side and no incidental paralysis. Although the surgery was successful, it was not without complications including chemical burns to his face that were a function of an allergic reaction to the skin prep agent and pressure from the surgical harness. Those wounds have fully healed at this point, but they have left permanent scars on his face. Mack was discharged from Johns Hopkins on Thursday, May 8, and we have been on the road to recovery ever since. Immediately following the surgery, we resided at Frazier Pediatric Rehab (a Louisville in-patient rehabilitation center) for three weeks and have since been followed by occupational and physical therapists to improve his coordination and strength. He has not only amazed us but also the professionals charged with his care. Within three months of surgery, Mack became a seasoned crawler and shortly thereafter began walking! We are overjoyed to see him toddling around the playground and with every spill, he pops right back up with a smile. He truly hasn’t skipped a beat and we have never been prouder of his spirit and courage.
On August 7, 2013, at Mack’s first post-operative MRI, we were informed that the residual tumor that was left from the surgery was growing. Though still much smaller than it was pre-surgery, it was active and needed to be treated. We were heartbroken to begin a new battle with this disease, as Mack started a 60-week chemotherapy plan.
Given the long road ahead of us, our family decided to move to Louisville this past November to be closer to our extended family. Mack has handled the treatment as well as can be expected. He receives a chemotherapy treatment almost every week and has been a true inspiration through the entire process. We are so thankful for the care and compassion the nurses and doctors have shown Mack since we arrived at the University of Louisville Pediatric Hematology and Oncology Clinic. As the doctors have informed us, Mack’s tumor should be considered a chronic disease. There will be no cure, but partnered with these doctors and nurses our efforts are focused on stopping the tumor from growing so Mack can live a long, healthy, active, and happy life. He is doing his part and we are so grateful for the role you play in his future.