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

Friday, July 31, 2009

Both enzyme counts today were below 265 and 165ish, so that is good. She just needs to eat so that they can see how her pancreas reacts with food in the stomach. Unfortunately, she has no desire for food, she has barely eaten anything in almost a month, but has only lost 2 lbs. They are going to stop the TPN (IV bag with sugar). They are hoping this will trigger her appetite. Cousin Kiera, Owen and Liam, as well as Auntie Say-Say and Auntie Ellen came by to visit and have dinner with us (outside of course). Lauren was so sad when she had to go back inside, since Kiera was still there. I could hear her sniffling softly while I led her back to her cell. To show what a trooper she is, once back in her room, without any prompting from me, she grabbed the little box of fruit loops on her table, open the package, poured it into a cup, I could tell she was determined to force herself to eat. Since she knows she can't leave until she eats. She then sighed, put the cup of fruit loops back on the table, and sat down on the chair with her shoulders slumped over. She is just not hungry. All I could offer her was a hug.

She did finally eat three fruit loops (cereal) over a span of 30-minutes. But right before I was going to leave she threw up everything in her stomach which was mostly 7-up. I guess, and hope, that's because her tummy is just not use to solid foods yet.

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