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

Tuesday, January 20, 2009

Good weekend. Lauren only complained of a headache a couple of times, which occurred after she was laughing a lot or when she was jumping and rolling around trying to keep up with Marissa, and Marissa's boyfriend, Tyler. In regards to Lauren, this is normal. I hope this doesn't have long-term psychological effects where Lauren doesn't want to have fun or laugh in fear of getting a headache. That would be no fun.

We've gotten into a good routine for her new medication. Monday - Friday, we try and have dinner around 6 pm, we give her Zophran (anti-nausea medicine) at 8 pm, at 8:30 we give her Temador (chemo) and she goes to sleep on the couch. At 10:30 pm we wake up to go to bed, where she takes her Hydrocortisone (steroids). At 6:15 am, before heading to work, I wake her so she gets her morning Hydrocortisone and then she gets her one more dose of Hydrocortisone at 2:30 pm. On the weekend it's the same routine except she doesn't take her chemo. Hopefully we'll eventually be able to wean her off her steroids.

We got a call from the Make-A-Wish Foundation on Friday. Due to Lauren's condition, she qualifies for a "Wish." They want to set up an appointment. Actually, they called us three months ago to set up an appointment for Lauren's wish. But, me and Hilary have been hesitant about having Lauren's wish granted at this time. Our dilemma: Does a 5-year-old really know what she wants? She only get one wish. What happens if she picks for her one wish, a life size stuffed elephant? Or a trip to Disneyland (which we already have annual passes)? What happens when she is 13 and she really wants to meet the Jonas Brothers or whoever is popular in 10 years? Or maybe she'd want to be an animal trainer for a day at Sea World. Or maybe she'll get into golf and her one wish is to play a around of golf at Pebble Beach with Tiger Woods and dad? But what happens if something happens and she is feeling too sick to enjoy anything? After we recently heard some tough news from three families that we have met:

-- Regina, a beautiful little girl, has had a relapse and has undergone two brain surgeries in the past 30 days (I mentioned her in one of my past blog entries).
-- Luke, a 1-year-old cutie, who has a tumor in his chest that is wrapped around his aorta, received great results from his chemo treatment and a successful surgery to remove it, but it has grown back and once again wrapped around his aorta. Everybody (the medical staff) is totally shocked, they have never seen such an aggressive form of cancer, and
-- Jessica, a five-year-old girl, who we've never met, but did see her family at the Ronald McDonald House. Her brothers played with Marissa when we were there. After being in the bone marrow transplant unit for over 5-months, Jessica lost her battle.

I think we are going to meet with the Make-a-Wish people and let Lauren have her wish now. While Lauren seems to be doing great and we continue to have HOPE, Regina, Luke, and Jessica conditions have reminded us of the harsh unpredictable nature of cancer. We will continue to plan for the future, but we must live and enjoy the "Now."

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