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

Wednesday, October 7, 2009

We were given a little bad news yesterday. Of course, in the big scheme of things, keeping things in perspective, it's not that bad. When the nurse told us in the morning that Lauren's counts remained the same at 4.8 or 4.9, they had actually dropped to 4.3. We're very disappointed since it's definitely not going in the directions that we need it to go. However, they think she might have hit a floor/bottom range. They are hoping that it won't drop below 4.3. They didn't take a 5 pm lab, allowing her to keep her much needed blood, so we're not sure where thehemoglobin levels are currently at. However, in keeping with the beer analogy, her pee has improved to a Corona hue.

Correction from yesterday's post. As proof that I don't listen, Hilary pointed out I was wrong again (big surprise there, her pointing it out, of course), Lauren is on 30 mg of Prednisone 4x a day (every 6 hours) not 3x a day. And once again, speaking of steroids, Lauren's is beginning to show signs of 'roid rage. She was crying/whining, "Mommy, mommy" for an hour last night (it felt longer), while she was trying to go to sleep. The more you ask her what's wrong or touch her, the louder she became. I am afraid it's only a matter of time (probably tonight) before she explodes into one of her Linda Blair Exorcist 'roid rages, which makes her a total stranger to us. For those of you that never had child on steroids, it can be one of the most unsettling experiences you'll ever have. I think Uncle Mike is still perturbed after witnessing one of Lauren's 'roid rage melt downs.

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