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, March 10, 2010

Lauren is up at CHLA today for labs. Monday labs showed that her
hemoglobin's were trending down so there is a good possibility that she
may need blood today or soon.

Great moment yesterday. As many of you know, a few months ago Lauren
has had a transformation in her personality. She has been really quite,
depressed, and uncooperative. She would just in front of the TV, not
really watching, just sitting there staring off into space in silence.
Dr. Finlay has always felt that this was due to her steroids. Of course,
this was also when we discovered that her tumor appears to be trying to
come alive again. So we really didn't know what the cause was. And
then a few weeks ago she quit talking. Not answering us or anything.

Well yesterday, Hilary woke to the sound of Lauren softly singing
(to the opening credits of Hannah Montana). Hilary pretended to sleep
and just listened to the beautiful sound of Lauren's voice until Marissa
screamed, "MOMMY, LAUREN IS SINGING!!" You know the change in Lauren
has been bad when even a 4-year-old can tell. Lauren isn't back to
herself, but she appears to be slowly improving. Speaking maybe one or
two words more each day. Of course, by the time I got home from work,
Lauren was tired and was back to her quiet self. Oh well.

Hopefully we'll get the okay to decrease her steroids from .4 mg twice a
day to .3 mg twice a day.

March 17th is Lauren next MRI. Anxiety is already setting in.

No comments: