Hi, all, I am new here and just wanted to introduce myself as I read through all the posts and try to absorb everything.
My third son, Max, was born March 23. Within three days, he was diagnosed with a VSD (ventricular septal defect) -- basically a hole in his heart. Because of this, he has been followed very closely by both his pediatrician and his pediatric cardiologist. When we went in for his 4-month well baby visit, his pediatrician noticed what she assumed was an enlarged liver (very common with VSDs). She put in a call to his cardiologist, who was very concerned, as he'd just seen Max a few weeks prior and hadn't felt anything abnormal when he palpitated Max's abdomen. He ordered an ultrasound and chest xray. A few hours after the tests, when we were relaxing at home with family, the pediatrician came to our house and told us the ultrasound had shown a mass near Max's right kidney and we needed to go to Phoenix Children's Hospital right away to be admitted.
A few days later, after many tests and a biopsy, we got our diagnosis of NB. Unfortunately, the tumor is twined around his aorta and vena cava, so surgical resection was not an option, and we had to start chemo. So far we've done one round and are scheduled to do a second on September 1st. We are enrolled in ANBL00B1 and ANBL0531 (Group 2), so we will only have the two rounds of chemo before they repeat all the scans to see if the tumor has responded. If not, back we go for 2 to 6 more cycles.
Anyway, I just wanted to say hi and that you and your little ones are all in my prayers.