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, July 15, 2009

Lauren's appears to be doing much better (even though she threw up all night last night). Pancreatitis causes the pancreas to produce extra enzymes, which in turn upsets Lauren's stomach. In quick layman's terms, her enzymes level (they measure two, but I'm only using one as an example) on Sunday night was 1,200 (normal levels are 100). On Monday they were in the 800's. Yesterday they were in the 300's. So her pancreas is doing much better. They also started feeding her via IV. It looks like Gatorade. Today, if her enzyme levels are still decreasing they are going to introduce her to some clear broth.

On Monday, the doctor from disease control department totally freaked Hilary out. He said he was VERY concerned. Not just concerned, but very concerned with Lauren's breathing. Her lungs sounded wet and her oxygen levels were low. So they hooked her up to oxygen. Yesterday he was very happy since said her lungs sounded a lot better and he took her off the oxygen. She needed to put the oxygen back on when she was sleeping though. Also, Lauren is still positive for para-influenza. She has had it for over three weeks. Everybody is a little surprised by this.

So far, the month of July has not been a good month for the Nihei's. Lauren has been admitted in the hospital every day but two days so far. And my Uncle Jun from Northern California had a stroke last week. Our thoughts, prayers, and wishes go out to him, my Auntie Michi, cousin Mark and family. It's hard to imagine my Uncle Jun suffering from a stroke since I've always thought of him as the toughest and strongest of my uncles (no offense to my other uncles!).

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