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 29, 2009

Lauren's count dropped low enough to allow her to advance to clear liquids on Monday. Contrary to what you might think, clear liquids includes: Gatorade, apple juice (not orange juice) and Jell-O. Go figure. While it's nice that her counts have dropped low enough for her to start on liquid, we're a little apprehensive since they think they started her on liquids and food too early, resulting in a relapse and another 12 days and counting in the hospital. So of course, a day after starting her on clear liquids, her counts went up slightly yesterday from 365 to 382 (under 100 is normal). This was very discouraging to me and Hilary. But…, the doctors don't think it's a significant enough increase to be concerned about. But…, we heard that before. Also we are dealing with a GI doctor, the other GI doc who is more familiar with Lauren is off this week. What bad timing. Last night as I was saying good night (via the phone) I heard Lauren in the background say she thinks she is going to be sick. I haven't heard anything since. I'm not sure if it's extra enzymes in her tummy that made her feel sick or her tummy is not used to liquids. We'll see when we get the enzyme counts in the morning.

As I was lying in bed trying to fall asleep, bad thoughts began to creep into my head. At 11:30 I thought to myself, would her pancreas ever get better? At 1:30 a.m., I thought, Is there a chance her pancreas has been damaged? At 3 a.m. I thought, what would they do if she had a bad pancreas? At 4 am I had to get up to go to the bathroom. I finally fell asleep just in time for my alarm clock to wake me at 5:30. It's going to be a long day.

Other stuff:
They swabbed Lauren's nose on Monday night to see if she would still test positive for Para influenza. Results indicated she was negative for Para influenza. Yeah!! Now we just need the department of disease control to give the all clear sign. This will allow Lauren to finally get out of her prison cell and wander the halls, go to the playroom, go down to the cafeteria, see Marissa and granda in the lobby, as well as other visitors, like her cousin Kiera. I know the nurses will be excited to get the all clear signal too, since they (and us) have to put on these yellow gowns, gloves and mask whenever they enter her room and take it off when they leave her room, even if they are going to be right back. The only drawback is that we'll most likely lose our private room and be moved into a double bedroom and have to share a room with another family. While it's a good opportunity for Lauren to meet other children with cancer, having privacy is nice too.

It's been almost three weeks since Lauren's last chemo treatment. We're getting a little nervous about having to put her chemo off for so long. Dr. Finlay told us we shouldn't be worried about it. But how can we not be??

Lauren hasn't gone to her physical therapy in over three weeks.

Lauren's next MRI is Aug. 5.

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