Bernadette was diagnosed with a stage three Neurblastoma (bigger than a very large grapefruit) pretty much wrapped around her aorta in late September of 2014 at 9 months.
She underwent 4 round of chemotherapy at Phoenix Children's Hospital and was set for a resection (removal) of her tumor in January of 2015.
Her surgeon there called last minute to tell us that it was not-resectable; he didn't feel he could safely remove it without damaging her vital organs. We sought a second surgical opinion with a doctor at Memorial Sloan-Kettering in New York City. He agreed to the surgery. It was routine for him; there were very few risks, despite the location. We arrived in NYC for the surgery and left our baby girl on February 13th in the hands of all the doctors. After an almost 12 hour surgery, her tumor was out but there were unexplained complications. She had to have some of intestine removed that connected to her stomach (in a Whipple procedure). She went to the PICU and we were told she was very, very critical and very unstable. She was on a ventilator and 4 blood pressure medicines among many others. We were told she wasn't going to live. The next morning she underwent another surgery, things still were not looking good for sweet baby, Bee. They put more drains in her. She made it through the weekend though, thankfully. On February16th she was back in the operating room needing more of her intestine removed. There were many little unexplained clots in her system. They asked for genetic testing to be done to try to get to the bottom of why she went from a very successful removal of her tumor to critical in a matter of minutes. She currently has an ostomy bag. And they are not sure of the state of her pancreas, so she goes off and on insulin. She needs to have her stomach reattached to her intestines still (the Whipple needs to be completed) though they cannot do that until she is off all her pressure medications. She is doing a bit better and they are labeling her stable now. However, she has much more healing to do and needs at least one more surgery. We will be staying in New York City, 2,000+ miles away from our home while she finishes out her ICU and subsequent in-patient stays here. We miss our baby girl's smiling face and can't wait for her to be playing with her best friend, her big sister, Adelaide.