Nico Baroni
Metastatic Stage IV Neuroblastoma

6 Months Old at Diagnosis

At the young age of six months our son Nico was diagnosed with metastatic stage IV neuroblastoma. It was 9/1/11 when we received the diagnosis. I had gone to several doctors over about a one month period trying to get answers. He just wasn't okay. He was screaming uncontrollably, not sleeping, rubbing his head over and over, he couldn't put weight down on his legs, and then he no longer could make eye contact with me. Finally, a doctor listened and heard me, and the correct blood tests were given in order for us to start on the road to recovery.

They transported us to the Florida South hospital in Orlando after a head CT scan at our local hospital observed 3 hematomas on his brain and continued scanning him when we arrived. After each scan more tumors were detected; head, chest, abdomen, legs. It was literally head to toe. It was also in his bone marrow. They couldn't even extract marrow because it was so hardened by the cancer. Nico began on a regimen of chemotherapy within two days of being transported to the hospital and was moved from PICU (Pediatric Intensive Care Unit) to the care of the Oncology Unit. Nico remained in the hospital for two weeks receiving chemo drugs, surgeries, and blood transfusions. Nico also lost his eye sight during the second week in the hospital. The tumors around the orbits of his eyes created pressure and damaged the optic nerves.

All together Nico went through six rounds of chemotherapy and four surgeries. We were told that Nico would need another surgery to remove a large tumor in his chest near his spine. After the second scan the tumor was no longer detected. They were convinced it was an error in the scan possibly due to the lack of lung expansion because of the anesthesia. However, I was convinced it was a miracle. By the third scan the tumor was still not detected. Doctors cannot explain why, and I am okay with that. Nico is an amazing spirit. He makes people smile more, laugh louder, love deeper, and believe in miracles. I am blessed to be his Mother.

Nico is almost 1 ½ years old and now NED (No Evidence of Disease) detected. He will continue to have blood tests taken throughout his life and scans to keep track of any tumor growth. Nico went through PT (Physical Therapy) and is currently in a Blind Babies Program provided by the Conklin Center in Daytona Beach. He is exceeding everyone's expectations and is doing absolutely fantastic.

If it were not for Childhood Cancer Research, Nico may not be with us today because receiving the same diagnosis 5 or 10 years ago would have yielded a much different outcome.


 

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