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, January 12, 2009


Lauren made a visit to her preschool on Friday. We're always a little apprehensive about Lauren interacting with kids, especially the ones that don't know her or have seen her before. When we're out in public, we get a lot of staring from both kids and adults, which we understand and accept. What gets me is when they make it obvious or say things out loud, that irk me. Take Friday for instance when Hilary and the girls were at Stater Brothers, a little 7-year-old boy who noticed Lauren started pulling on his sister's arm to get her attention, and then started pointing and laughing at Lauren (good thing I wasn't there, I would have…..), while Lauren didn't let on she noticed, I'm sure she did (she notices everything). And then later, when he saw Lauren again, he started pulling on his mother's arm to get her attention, she didn't look, she either didn't notice Lauren or was ignoring her son on purpose. We realize that Lauren, with her bald head and the outline of her shunt sticking out of her head, looks a little different than most other kids, but thought of how she feels when kids (or grown-ups) make fun of her because of her looks still breaks our hearts. So when Lauren visited her pre-school, Olive Branch, she did get her fair share of stares. It's not every day, 5-year-old kids see a bald-headed girl. But when I heard that a girl named Kelsey came up to Lauren and said, ooooh Lauren, you look so beautiful!, my Faith has been restored (a bug or something must have hit me in the eye, because I got a tear in my eye). What can you say to that? It wasn't like either of her parents were around to tell her to say that. Kelsey is one of my new favorites of Lauren's friends. Thanks Kelsey.


When she heard about the little boy laughing at Lauren, granny responded, "Good thing I wasn't there".

Lauren really enjoyed her visit to Olive Branch so I think she is almost ready to go back to school, which will be nice for her, but it sure makes us very nervous. Not just how other kids will treat her, but Lauren hasn't left either Hilary's, her grandparents, or my side in almost 10 1/2 months. But she needs to start acting like a 5-year-old and doing the things 5-year-old's do, like go to school. Yikes.

Other things:
- While they have improved a lot since we've up'd her medication, Lauren continues to have headaches and her speech is still a little slurry at times. It's just a matter of getting the right amount of her steroid, Hydrocortisone, correct. Hilary informed me that the reason it's easier to get her off Hydrocort than Decadron, is that Hydrocort is closer to the steroid that the body produces naturally.

- We spent all day at Disney on Sunday, hanging out with Lauren and Marissa's friends, Tyler, Karly, and Kamryn. That was a lot of fun. One of the highlights happened during the Crush Show (an interactive animation show with the turtle from the movie, Finding Nemo), Lauren got selected to interact with Crush, she got to ask Crush a question, which was, What do you like to eat? Crush referred to Lauren as, Longboard Lauren. She got a kick out of that. On the way home Lauren said, I should have asked him what his favorite color was. She is going to ask him that next time.






Disneyland, the happiest place on earth?

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