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, June 30, 2008

Chemo sucks. Just when it felt like Lauren was almost back to normal (her energy level was up and her personality was back), we have to start chemo again. I know it's needed but it was nice having our little girl back. Also, after handling her the first two rounds of chemo great, Lauren is not handling this third round very well. She threw up all night on Friday, off and on throughout Saturday and Sunday and she slept most of the day Saturday and Sunday. It's tough to see her sick and not being able to do anything to help her. And to top it off, all month she has been so excited, waiting for Wall-E (Pixar movie) to come out in theaters (there's a lot of Wall-E billboards on the way to the hospital). We were planning on watching it on Saturday. She was so excited. She woke up early and since we had invited her friends Hannah and Hailey, she said she wanted to wear her new tennis shoes because she thought they would be wearing their tennis shoes and she wanted to be able to run around with them, but an hour before the movie started she started getting sick and falling asleep. We asked if she wanted to go watch the movie the next day instead, she didn't even fight us, she just said yeah. On Sunday she still wasn't feeling well enough to go. So we told her maybe tonight or this weekend.

One of the most disconcerting things about Lauren being sick during this round of chemo is that that it's coming at time when we are lowering her Decatron (steroids). We are now down to 1/2 mg twice a day. While it's not much steroids, it still makes us nervous. Vomiting was the first reaction she had when we took her off it the first time, so I'm worried that we might mistake her being sick, assuming it's from the chemo when it's really due to swelling in her head. I suspect though that it's due to the Temador (chemo pill). Since she gained so much weight, they had to up her dosage of Temador from 100 mg to 120 mg.

Lauren has to go to CHLA for labs (drawing blood to check her levels) and we'll also find out if she needs to take Temador (chemo pill) for one more night, since she got sick 25 minutes after taking it on Saturday night. I guess the rule of thumb is that she doesn't have to retake any medication she took 30 minutes prior to getting sick. Hopefully she doesn't have to retake it tonight. She'll have one more shot of chemo on Wed. and then another shot next Wed. then she'll be done with her third round of chemo with one round remaining before we start with the serious stuff.

I forgot to mention last week that the kidney test was a success. There was some confusion in the lab. Since we wanted to make sure we collected enough urine during the 12-hours of collection, Hilary kept making her drink a lot of lemonade throughout the day. We collected so much urine, the lab wasn't sure if it was a 12-hour collection or a 24-hour collection. But this was great news, since it meant we wouldn't have to go through the test that uses radiation, and Lauren wouldn't have to stay away from Hilary.

The next important date is Aug. 25th, the date of her next MRI.

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