Posted: November 5, 2014
3 Weeks Old at Diagnosis
A short summary of our son Ty’s journey in just his first year. He was born June 15th, 2011 and was diagnosed with neuroblastoma by 3 weeks old. We found this after following up on a swollen kidney found on an ultrasound before he was born. Since diagnosed he has gone through 3 surgeries, central line placement, 19 scans (CT, MRI, bone scans, etc) of which 11 required sedation, 3 ultrasounds, 12 heart and hearing scans, 13 X-rays, 14 blood/platelet transfusions, 62 blood draws, 28 ivs, over 60 injections of growth hormones, and he completed 8 rounds of a total of 29 doses of chemotherapy.
Despite all of this he is a very happy and chubby baby. He had surgery in February since the tumor had shrunk 86% and they were able to remove as much of the tumor as possible and thankfully they were able to take a great deal of the tumor (a total of 90% was removed) although they had to leave some due to its position and involvement with other organs and vessels. The pathology report said of what was sent to them from the removal only 5% showed still live cells and that they appeared to be in transition stage. Which would mean the same for what was left, that hopefully only 5% or less was still active and that it was also transitioning. We did another set of scans in April to establish a new baseline for what was left and that showed only 2% remaining. Our next scans are mid July and then every 3 months for 1-2 years we will rescan to monitor for regrowth. After that he will go to every 6 months for a year and then yearly forever. He also has once monthly labs to watch for any signs that the tumor may be regenerating and we will do that every month for 1-2 years, every 6 months for a year and then yearly forever as well.
He was able to have the central line removed and has been doing well at home. He smiles constantly and is stronger than anyone I have ever come in contact with. The two spine anomalies found during the process (L2/L3 fusion and T2 Hemivertebra) are just continuing to be monitored at this time and will not be dealt with until a year off of chemo. They will just continue to watch and evaluate the degree of change over the next several months. We have been able to go out and enjoy being “normal” again and not have the ongoing fear of low lab values or exposure outside of the bubble he had been in for 8 months. He was on 2 preventative antibiotics for his kidney and for pneumonia prophylaxis for another 4 months but that was the only daily therapy he had to do until June.
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