Apr 01, 2010
Saturday evening my daughter woke up screaming and crying uncontrollably. She was unresponsive and very weak. Her arms and legs were limp and she was is hysterics. We called the ambulance and they brought us to Childrens Hospital. In the ER she was compalining of a headache so they did a CT scan. An hour later the doctor came into the room and said they had found a mass in the right ventricle of her brain and it was blocking the flow of spinal fluid causing backup in the brain which was causing pressure aka the headaches. They admitted her that night to the PICU to keep a close watch on her. She went into surgery tuesday morning at 7:30am and was back in her room at 4pm. They were able to remove the entire tumor however part of it was attached to the brain so she will need further treatment to keep it from regrowing. The preliminary diagnosis is Primitive Neural Epidermal Tumor. Without treatment the survival rate is very low. So we are opting for treatment. They said that she would probably have to have chemo or radiation once a month for a year and CT scans every three months for two years.
I am jus beside myself and don't know what to do. I have had maybe 5-6 hours of sleep in the last five days being here at the hospital. I am eating every chance I get because I know that I need to stay healthy for the baby. Docs say she is looking good. She is recovering well. She has a drain coming out of her head and a pick line in her arm because she blew two IV's in the first two days. She hates the tubes and hates that she has to use a bed pan. She has some weakness in her left side so she is getting physical therapy everyday. Her center of gravity is off, she has a hard time sitting up straight unassisted and when walking she has to be assisted as she leans to the left.
The outcome looks okay but we are still waiting for the pathology report to come back and give us an absolute answer and plan for the future.