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, January 28, 2009

Lauren is going to CHLA today to get her bi-weekly (every other week) chemo. Hopefully it won't take as long this time as it did the first time (two weeks ago). Since she didn't have a reaction to the 90-minute drip, they'll administer the two chemos (Irinotecan and Avastin) over 60 minutes this time. If she doesn't have a reaction in the 60 minutes time period, they'll speed it up to 30 minutes the next time. Also, we'll be making Lauren's next MRI appointment for sometime in March.

Lauren is going to wear her pink 2-inch wide strip of hair to CHLA today. She wants to wear new clothes because she doesn't think any of the nurses will recognize her with hair. She loves her new pink hair sooo much, that she went to bed with it on (it's held on with Scotch tape!) last night. She did mention that she wanted more because she doesn't think it covers the back of her head. I think we might need to buy her a wig soon.

Early this week, Lauren announced she was ready to go back to school. It looks like she'll start pre-school at Olive Branch again on Tuesday Feb. 3rd. Yikes!! She'll just be going Tuesday and Thursday in the afternoons from 1-4. While this doesn't sound like a long time, it sure makes us nervous. She hasn't been out of a family members' sight since April '08. Also a concern is obviously the germs that go along with a lot of children. And also the potential teasing from other kids that could happen. But we can't keep her in a bubble. That is no way to live life.

Also, we never received a call back from the Make-A-Wish people, it's been over two-weeks. I think I'll make a follow-up call today.

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