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

Monday, September 29, 2008

Tough emotional weekend for us since Brooke was due on Saturday. It was hard to not think how things should have been...that at 8 am, we should have been arriving at the hospital. At 11:30, we should have been wheeling Hilary into the OR room for her c-section. At 11:45, we should have been holding Brooke. At 12:30, Lauren and Marissa should have been seeing their new sister for the first time. And Today we probably would have been coming home with Brooke. I imagine Lauren and Marissa hovering over Brooke, watching her watching them, or them fighting over who is going to give Brooke her bottle. Lauren was going to teach Brooke how to keep her clothes on (Marissa loves to run around the house naked) and Marissa was planning on teaching Brooke how to wiggle her (naked) bum. Lauren understands Brooke is in heaven while Marissa will ask every now and then, "When is Brooke coming home?" I think she thinks Brooke is at the hospital. I know it's probably not healthy to think this way, but I can't help it.

On a lighter subject, Lauren and I drove to Camarillo on Saturday to attend Dr. Finlay's 60th birthday party. Everybody was happy to see Lauren. Whenever Lauren and I were introduced to a hospital staff's spouse, I heard a lot of, "This is the young girl I was telling you about." While Lauren didn’t meet as many children her age with a tumor, she did meet one young 11-year-old girl with relatively the same type of tumor and going thru the same type of chemo treatment, that Lauren really liked. It was both cute and sad when they both told each other good luck when they said their goodbyes. And even though it was a long drive and we didn't get home until 11 pm, Lauren said as we were leaving, "Daddy, I had a lot of fun. I am glad we came." It was totally worth it.

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