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, February 2, 2009

Great weekend. On Saturday, Lauren spent the entire day with granny and grandda. She wanted to hang out with them by herself. Which is a sign she is feeling good. When she doesn't want Hilary to leave her side, we know she is not feeling right.

On Sunday, Lauren was feeling so well she asked if she could go to Sunday school. That was a shocker since she has never gone before and would be in class by herself with kids she didn't know. She came home singing and dancing. She can't wait to go back next week. After coming home from Sunday school she asked if we could go buy some flower seeds to plant. So we went to Home Depot (where she sang very loudly the songs she just learned in Sunday school). She to told me she wanted to grow a very big flower. The biggest flower we could find was a sunflower, the package said they can grow 12-feet tall. The thought of holding a 12-ft flower made Lauren laugh uncontrollably. I haven't heard her laugh like that or laugh so much in a long long time. It was awesome. And she didn't even complain of a headache after.

Ever since she started taking the steroid Decadron again she hasn't complained of headaches as much and her speech sounds 100% better (no longer slurry). She is now on .5 mg of Decadron and 22.5 mg of hydrocort a day. The only draw back is her face is getting puffy again. Even so, it's great to hear her laugh and not worry about anything else.

Big week: Today Lauren and her cousin, Kiera, are getting their ears pierced. Lauren has been looking forward to this day ever since that day in summer when I caught the two of them on Lauren's hospital bed whispering and scheming about getting their ears pierced together. She has been asking for a week now, "How many more days before I get my ears' pierced?" We had to make sure her blood counts were back to normal before she could get them pierced due to the risk of infection. While I personally think she is a little young to decide on her own that she wants her ears pierced (I would have less of a problem if we pierced them when she was an infant), the fact that she is bald and has been mistaken more than once for a boy, I have since softened my stance, so I'm okay with it. Hilary and Kiera's mom Vicky are taking them to the same place they went to get their ears pierced a long, long, long time ago, before they even had ear-piercing guns. Afterwards, they are going to take them to the same restaurant granny and Auntie Ellen took them to lunch. We asked Marissa if she wants her ears pierced, she said, "NO." Marissa is definitely not a follower.

Tomorrow, Lauren goes back to pre-school at Olive Branch. This will be the first time since March '08. She'll be going in the afternoons on Tuesday and Thursday. I think it's important that she goes and gets into a routine since she is scheduled to start kindergarten some time later this year. Lauren said she is ready. While I am nervous, I'm not as nervous as before since she did well in Sunday school. I am still a little nervous about her catching the flu and being in contact with all the germs that are associated with little kids and school. Lauren did say she is nervous about the play yard. Looking back, Lauren not liking playing in the play ground, especially going down the slide, was the first sign something was not right.

We're still waiting on the authorization from my insurance company, giving us a green light for her MRI and physical therapy.

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