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 14, 2009

Lauren is at CHLA getting her chemo today. This is the start of Phase 3 of her chemo. I'm a little sad we're starting chemo again so soon. Even though Lauren has been off chemo since mid-November, we really haven't had a chance to really enjoy it with her getting sick, her headaches and slurred speech, but what can you do? Lauren's headaches have been getting progressively worse. She cried herself to sleep last night. But it's not all bad. In between headaches she plays hard, as if she is trying to cram as much fun as she can before the next headache hits. At times she feels so good that she has been making up so her own dancing moves and she has been doing a lot of singing on our (cheap) Karaoke machine. Her coordination and balance is still not the greatest, but she is getting better. She'll be going to physical therapy soon, probably at CHOC. Hopefully this will help.

Auntie Say-Say has her MRI today. It's a very important one (of course every MRI at the time, is the most important one ever). She is at the end of her chemo and this MRI will determine her next course of treatment or if she can stop. She has been on chemo since Sept. Once her MRI is done, which is done at LB Memorial, she will drive the results up to CHLA to give to Dr. Finlay. While she receives treatment at LB Memorial, she is under Dr. Finlay's care. I can imagine the battle that goes on in an adult's mind, the fear and doubt that tries to creep while they're lying in the loud MRI machine for 45-minutes unable to move, hearing all the clicks and the sound of the motor as it scans you. It's hard enough when we're waiting for Lauren. But I don't think young kids have this problem because they're usually too young to realize the significance of the MRI and/or they are under while they are getting the MRI. We're thinking and praying for you, Auntie Say.

No comments: