On Saturday, August 25th, Ana had severe pain on her lower right side. Her abdomen was very distended and she could barely walk. We took her to an emergency clinic and discovered she also had a low grade temperature of 99.1. They sent us to the emergency room, fearing appendicitis. She got a sonogram to check if her appendix was inflamed and they discovered her liver was enlarged, so she got a CT scan which revealed a huge mass on her liver. She was transported to Westchester Medical Center for more tests and to meet with a pediatric oncology team.
8/27/12: She got a needle biopsy of her liver but the results were inconclusive as to the origin of the tumor.
As of 9/3/12, we still did not have a diagnosis, but heard from multiple physicians including the attending pediatric oncologist and the surgeon that the mass is most likely malignant. It has not spread anywhere beyond her liver (as far as they know – she’s still getting testing done). The mass seems to be originating somewhere else besides the liver.
9/4/12: Ana had a more invasive biopsy and a central line put in – she was in surgery for three hours. They took a larger sample of the tumor so the doctors could get a definitive diagnosis. The central line (called a Broviac Catheter) was put in in preparation for chemotherapy treatment.
9/7/12: We got the preliminary results from the second biopsy that this is something called epithelial hemangioendothelioma (EHE). The final biopsy results were expected by the end of day on 9/7/12, but we were told we would get them Monday 9/10.
9/7/12: The Liver surgeon, Dr. Wu, met with us and explained that the tumor is operable as is (it is 20 cm large), but she would likely need a complete liver transplant. He is awaiting the final biopsy results before saying more.
9/11/12: We are STILL waiting for the final biopsy results. One of the resident oncologists, Dr. Mona Elmacken came in and explained that the tumor may not be EHE as initially reported. They sent the biopsy slides out to a specialist in California and we will hopefully get the results back tonight or tomorrow.
Ana is a smart, funny and imaginative child. She loves to draw, sing and hang out with her friends. She adores animals, especially our newest kittens, Pepper and Luna. She has always hated needles and doctors, and now she is being poked, prodded and examined by a fleet of them, but she is being extremely brave.
You can follow Ana’s Progress in the Updates section which will contain blog posts from mom, dad and other family members.