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 30, 2008

Lauren got to experience her first real earthquake yesterday. There have been a few small ones in the past, and she thinks she felt them and would go around all day telling people she felt an earthquake, but she definitely felt yesterday's quake. While it was only a 5.4, it was biggest one in So. Cal in awhile. The shaking was growing violent enough where I started thinking, how strong is it going to get? Should I jump under a desk? Luckily it stopped before I did, that would have surely cost me my "Man" card. While I was at work when the quake hit, Lauren was at CHLA having her bi-weekly blood test. She was in the playroom when it hit. She said everything was shaking and that grandma screamed and hugged her and mommy ran and hugged Marissa. I asked her what she thought about the quake and she said, "I liked it!" The best part is a lot of the nurses are from around the country and this was their first real earthquake experience. They did have to evacuate the hospital. CHLA is a trauma center and they didn't know if they were going to have a mass of victims being rushed in.

Lauren's blood count is dropping fast. I wouldn't be surprised if she needed a blood or platelets transfusion on Friday. I would think she'll need one by next week for sure, which isn't a bad thing, since she usually feels better and has more energy afterwards. It's her version of happy hour. Also we'll probably have to start the GCSF shots again on Friday. Which is no longer a big deal. We all know our job: I draw the circle on Lauren's thigh, Lauren applies the numbing cream and Press and Seal wrap (to keep the numbing cream in place, since it takes about an hour for it to work and it comes off easy. This was a tip from my friend Anne who's son is going through the same thing Lauren is going through for over 5-years. Another source of inspiration and hope), Lauren will then prep and sterilize the site, and Hil administers the shot, while Marissa supervises and cheers. Not only does Marissa supervise, but we always have to draw a circle and put numbing cream (we use regular lotion) on her leg too, as well as the Press and Seal wrap.

A lot of the nurses have been telling Lauren they want a bracelet. She is making a list of who she needs to bring a bracelet for on Friday.

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