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, April 29, 2009

As Lauren's friend's mom wrote on her daughter Zoe's blog this morning, no news is good news. Thankfully there hasn't been much to write about since Lauren has been doing great (other than her hand shaking and her weight gain), Knock on wood! Lauren continues to go to pre-school and physical therapy twice a week. Not sure when she is going to start her occupational therapy for her shaky hand. I'm also a little nervous about this swine flu that is going around. With Lauren's compromised immune system, it could be very serious, not that it's not an already serious virus. A co-worker asked me if we are keeping her out of school because of it (swine flu). I told her, no, we can't keep her in a bubble. She still needs to be a kid and enjoy life. Of course, we probably won't be making any trips to Mexico any time soon. I'm more nervous about her visits to CHLA and CHOC, places people would go when they're sick.

This and that:

- The girls spent a day with Nurse Tina and Nurse Karen at Victoria Gardens on Saturday. Everybody had a great time, it's always nice to hang out with the nurses outside of the hospital setting. Hopefully Nurse Tina will email me the pictures from Saturday so I can post them on Lauren's blog.

- Lauren's next MRI is next Wednesday. The bad: It's very stressful waiting for the results. The good: Our traditional celebratory Lobster Dinner.

- We have signed up (last minute) for Cinco de Mayo Half Marathon & PCRF Reaching for the Cure 5K, 10K, & Kids Run. We are playing on doing the 5k walk or maybe the 1k kids walk. I would do it, but Hilary isn't in shape for the 1/2 marathon. While that is a joke and I probably could do it, Lauren on the other hand could. That girl could walk forever. I think all her time in the hospital unable to get up and walk around has really had an effect on her. She hates riding in a stroller. I know it's last minute but if anyone wants to join us. Here is the link below:

Cinco de Mayo Half Marathon & PCRF Reaching for the Cure 5K, 10K & Kids Run

I know we don’t say this enough, but thank you everybody for all of your continued support, prayers, wishes and good thoughts. We really appreciate it. Keep the prayers and good thoughts coming, while we have made it past some of the tougher parts (intense chemo, septic shock), we still have a huge mountain ahead of us. Thanks again!

Posted by admin at 10:30 AM

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