The Nihei's: Our Story

On April 1, 2008, our 4-year-old daughter, Lauren, was diagnosed with a brain tumor. After her biopsy on April 8th it was determined that she had a bithalamic anaplastic astrocytoma with extension into her brain stem.

In the beginning of March we noticed a personality change in Lauren who normally is a very outgoing and happy-go-lucky kid. She became very clingy and shy. She didn't want to talk on the phone anymore, or play on the slide with the other kids at pre-school. By mid-March, Lauren started complaining about headaches. Her pediatrician thought it might be a sinus infection or that she may need glasses. He put her on antibiotics and we made an eye appointment.

A few days later when she started holding her head funny and her headaches returned we insisted on a CT scan. That's when her pediatrician sent us to the ER at Children's Hospital of Orange County (CHOC) for a CT scan, and when our world was turned upside down and our nightmare began...

Story continues at bottom of page

Thursday, August 7, 2008

Lauren had a fever at 4:30 am this morning and we needed to rush her to the emergency room. Rush may be too strong of a word, but she had a temperature of 101.5, which according to our tumor/oncology handbook, instructs us to call the on-call oncologist immediately. That oncologist instructed us to bring her to the emergency room immediately. Since Lauren is super neupogentic, her body is unable to fight off germs and bacteria and is very susceptible to infections, which can become life treating very quickly.

Poor Granny Vernor who we had to call at 4:30 am to wake up and come down to our house to watch Marissa. I'm not sure how we'd do it without Granny V.

Lauren also had the chills, which is another red flag. The tumor book instructs us to bring her immediately to the ER. Once at CHLA they immediately took blood samples, urine samples and started her on an IV and antibiotics. She also needs to have a platelet transfusion and will be admitted for at least 48 hours (to see if anything grows from the blood cultures), and her blood counts (ANC) needs to increase to over 1,800 before they release her. I now understand what the doctor meant when he said during our first visit to the ER and the last chemo cycle, "Welcome to the world of neupogentic." The good news is they are going to order all of the tests Lauren needs for Phase II while we are there; hearing, ECHO (ultra sound of the heart), EKG, kidneys, and eyes. This way we don't have to drive all the way back to CHLA in the upcoming weeks.

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