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, September 28, 2009

Getting ready for a mentally tough day. Me and Hilary will be attending Regina Tan's funeral later today. Going to a child's funeral is hard enough. A young 10- year-old girl who should've had her whole life ahead of her. She should've just been enjoying her childhood over the last 5 years, not cooped in hospitals, enduring operations, radiation and chemo. And when your own child is fighting the same thing, these funerals are particularly tough. How do you keep your mind wandering and not put yourself in their (the Tan Family's) shoes??

Other news:
Lauren stayed home from school today. She hasn't been herself the last few days. No appetite, very pale, very tired, legs hurt, just very blah. Hopefully it's just a slight weak bug. It's hard to tell what is going on since we lowered her Decadron (steroid) last weekend from 1.5 ml. to 1.3 ml. So maybe the lack of appetite is due to that. That's one of the give and takes in regard to her Decadron, it really increases her appetite. Pain in her legs could be from her physical therapy on Friday, which they were making her do squat-type exercises. And Marissa had some type of bug last week that made her seem paler (she takes after her mom). And that's the our world. Living on the edge. Pins and needles. Never know for sure if any mood change is tumor related or just the common cold (which can also be serious). No wonder it feels like I've aged 10 years since this all has begun. The words "you just can't worry about it" are for people who don't have children fighting cancer or other chronic illnesses.

On a lighter note, we'll be going to Camp Ronald McDonald's this weekend (www.campronaldmcdonald.org), assuming Lauren is feeling up to it. It'll be nice for her to meet and hang out with other children dealing with the same issues as she is. They also have fishing, hopefully in a stocked pond, since haven't caught any in the last four fishing trips we went on and Lauren really wants to catch one. And when you ask her what she wants to do with it when she catches one, she'll say, "eat it, of course." That's my girl! Hopefully the pond will be stocked with yellow tail tuna.

Important dates:

September 28 (today): Eat at Chili's. 100% of all profits to St. Jude Children's Hospital to fight childhood cancer.

Oct. 24 & 25: Screaming Eagle Club Championship.

Nov. 1st: Scheduled date of new baby.

Nov. 5th: Lauren's next MRI.

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