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, August 24, 2009

Busy, but fun weekend. Grandma & Grandpa Nihei from the Bay Area came down for a visit. It was nice to see how much the kids love their Grandma & Grandpa. From the minute they walk through the doors, the kids are all over them. They definitely don't see them enough. On Saturday we spent a hot day, along with everybody else who lives in the San Diego area, at Sea World. Going to Sea World on such a hot day with two older people, a weakened kid on chemo, and a pregnant wife might not have been the best idea. It was so hot that we even sat in the soak zone for both the Shamu and dolphin show. Unfortunately…, we didn't get hit with a single drop of water. Oh well. Nonetheless, everyone had a good time. We looked for Lindy, the killer-whale trainer who gave us an impromptu back stage tour last January. We just wanted to say "hello" and let her know how well Lauren is doing and so that she could see Lauren with hair! But she was off yesterday.

Sunday, my childhood friend, Jimmy Higuchi and family came over to swim and bbq. The girls love his 9-year old, kind-of step-daughter (long story), Kayla, oh and his 2-year-old son, Trane. But mostly Kayla, since she is a big girl (older) and therefore cool. Hopefully we'll hang out with them again later this week at Disneyland.

Today Lauren is bringing Granny to school for show-in-tell because Lauren doesn't think the other kids have seen anybody as old as Granny. Just kidding. Hilary signed granny up to be a classroom helper once a week. Hilary will also be a classroom helper once a week on Wed. This way we can keep a look-out for the little boy who has been touching (poking her in her back) and teasing Lauren. Thank you Madysen for sticking up for Lauren last week.

Tomorrow, Lauren will be heading up to CHLA again for labs. They want to check her enzyme levels, which were slightly elevated last week. Lauren is still taking Tamiflu as a precaution. Lauren is also down to .2 mg of Decadron.

Next MRI: Unknown. No appointment scheduled yet. Probably some time in Nov.

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