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, July 9, 2008

Today Lauren has her last shot of chemo and then cycle 3 of 4 is complete. She'll get a couple of weeks off before starting the 4th and final round (of phase 1) of chemo on July 28th (I think). By next week, I am expecting her to feel really good since she has been doing so well lately. Maybe we'll take a short trip some where during the last weekend of July.

Monday's lab indicated Lauren's blood count was low. With her counts being low we were thinking we might need to start giving Lauren the GCSF shots again, which help trigger her body to increase her blood output, however, the nurse practitioner, Barbara (our regular nurse practitioner Anna is on vacation), said it's probably not needed since Lauren blood counts should now be increasing. We will find out today if we need to give her the shots. Now that Dr. Patel is gone, Anna is in charge of Lauren's day-to-day care, which I think she was anyways. Dr. Patel was just very good at being involved and talking to us, we're going to miss her. Just an FYI: We haven't met with Dr. Finlay since the beginning of May, not that we're concerned. The staff at CHLA is on the ball.

Now that Lauren is completely off steroids, she is not eating. While the thought of certain foods (shrimp, lobster, ramen noodles, spaghetti) makes her lick her lips and rub her tummy when it comes to actually eating it, she'll only take a few bites. And with her not eating as much, combined with her increased energy, she has already lost a couple of pounds. Also, with her increased energy and the summer weather, she has been swimming everyday. She is determined to learn how to swim. She doesn't want to wear her water wings anymore and can now swim 5 to 6 feet by herself. All we need to do now is get her to breathe or keep her head above the water while she swims. We hope to enroll her in swim lessons in August. There has been only be a couple of times when she sank to the bottom (3 ft) and couldn't stand up on her own and I needed to rescue her. While it made me panic, she thought it was funny. I am not afraid she'll drown, I just don't want her to become afraid and not want to go into the pool anymore. Also, we saw a special on the upcoming Olympics, she asked when she could start gymnastic (it was more of a tumbling class) again. It's just nice to see her wanting to do more physical activity things rather than just sitting by herself coloring and/or putting beads on a string.

Not all is rosy though. We're noticing Lauren's right eye is wandering more and she turns her head when she talks to you, favoring her left eye. She also complained her shunt in her head was hurting last night and she has a sore in her mouth. We'll discuss all of this with either the doctor or nurse practitioner today.

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