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, July 30, 2009

Lauren's enzyme counts went down again yesterday to 345, which was a huge relief. Now all she needs to do is start eating. Once she starts eating and her enzyme counts don't increase and she doesn't have any pains and doesn't throw up, she can come home. But Lauren has no desire to eat right now and we're not going to push her to eat like we did last week. We're going to trust her body to know when it's ready to start eating. We think the first time her body knew that it wasn't ready.

While her cultures came up negative for para-influenze, the disease control department still will not give her the all clear to walk the halls, or go to the playroom in fear that she could shed dead virus cells from her skin. (???) Really? How much potentially bad stuff is out there in the general public? I could never work for the disease control department. I would be so paranoid, I'd never go out in public. However, Lauren is allowed to leave her room if she goes outside the hospital, except, she has to wear a mask due to the construction next door. It's not much, but we'll take it. Anything to get out of the rut we've been.

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