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, October 22, 2008

Lauren is still doing great. No fevers yet so she hasn’t been admitted into the hospital as was expected. We are pretty much just hanging out at the Ronald McDonald’s House (RMH). Hanging out at the RMH and not at the hospital has allowed us to meet and hear about some of the other families there. Some of the families we recognized from our first stay there.

One of the families just lost their little 4-year-old girl on Monday. I’m not sure of the cause, but she has been sedated for a while and has been in the hospital for 4months. While it was unsettling for the other families at the RMH, I think the little girl’s family seemed a little relieved that it’s over and that she was no longer suffering.

Another family is from the Ukraine. They been at the RMH for over 6 months. The boy, 14-15 years old lost his leg in an earthquake over there. They are trying to re-grow his bone?? Is that even possible? He flies around the RM house with his crutches.

We met the mother of a little 7-year-old boy named Connor (from Oregon). He just had surgery to have his spine straightened. He’ll be in a halo (brace) supporting his head and neck for a year. Even though he just had spinal surgery he walks around the house, with his halo, just smiling away.

Another boy, 10 years old, has the biggest nicest smile. We just heard he only has a little time left. He had a brain tumor that was removed and has returned. It’s now inoperable. It's heart breaking to see him playing with that big smile, knowing what I know. The mom is always smiling watching her son play. It's amazing how brave she is.

Last night we met 4-year-old Brooke from Minnesota. She was born with a little ear and just had surgery to give her a new one. In a year, she’ll go to SF where they’ll give her hearing for the ear. Amazing! It was bitter sweet to see Lauren, Marissa, and Brooke sitting together listening to a story being read to them by a Ronald McDonald volunteer. While I'm a little sad they were leaving today to fly back to Minnesota, since it would have been fun for Lauren to play with another girl her age, it is good to know they'll never have to return to the Ronald McDonald's House again.

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