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

Thursday, May 22, 2008

Long day at CHLA. Had to be there at 7:30 am for Lauren's kidney test. For the test she had to be injected with this radioactive substance. Unfortunately this made her radioactive and since Hilary is pregnant, she was advised that she needed to stay at least three feet away from Lauren until Friday. Lauren seemed okay with this and understood why, but later in the day when she was tired and wanted her mommy, she got really upset and we couldn't calm her down. She said, "She was really mad at the doctors, that they just want to keep her away from her mommy. They want to separate us." It was very hard for me to hear it, but especially hard on Hil since she can't cuddle or comfort Lauren.

Another heart breaking thing happened yesterday. In the car on the way home, Lauren pulled a big clump of hair out of her head. She thought it was really funny. She kept laughing and saying, "Look mommy, look daddy, look at all the hair I pulled out!" I felt sick in my stomach. When we got home, we sat her down and explained that chemo can sometimes cause hair to fall out. And that she may lose all her hair. But she said, "Don't worry, it will grow back." Phew! That was a relief.

We got our schedule for our next cycle of chemo. We will be starting again next week on Tuesday instead of June like we thought. While we know it's necessary, it is a little sad since Lauren has been in a great mood and has had lots of energy the last week. They were thinking about starting chemo tomorrow, but decided to hold off until Tuesday due to the holiday weekend, which is good since Grandma and Grandpa Nihei from NoCal will be down to visit this weekend. CHLA is also going to try and set us up for the night at the Ronald McDonald House during next week's chemo. That will be interesting. They also set a date in June between the 2nd and 3rd cycle for surgery so they can install another port to harvest Lauren's bone marrow. The only bad thing is that it might be installed in her hip area (since she already has a port in her chest) and she won't be able to walk, but luckily, they'll harvest the bone marrow the next day, which hopefully will only take one day (two at the max.), and then they'll remove the port.

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