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, June 10, 2008

Tuesday, June 10th. They took blood at 8 am. We didn't get the results back until 11am. We needed the blood test to show at a minimum 10 count (ideally the count would be 20 or higher), her count thankfully was 10.4. So the blood harvesting was a go! That was good news. The only thing is… since the number was so low, it may take 3days to harvest enough stem cells. But we'll worry about that tomorrow. The harvesting procedure is going to take 7-plus hours and she needs to be lying down. The biggest challenge is going to be keeping her entertained. Good thing her Uncle Steve from Arizona flew in to help out. And of course there's Grandma Vernor who has gone to every doctor and chemo appointment. Who would have thought I would be so happy to see so much of my in-laws? Just kidding.

Lauren is down to 2.5 mg of steroids a day. This is the lowest its been since the scary episode in May when we took her off of it the first time. Lauren's face, which had become very puffy from the steroids, is already beginning to thin out. Also, Lauren has begun making bead necklaces, which she was unable to do last month because her hands use to shake too much for her to put the beads on the thread. But lately her hands, while they still shake, is not shaking as much that she is able to put the beads on the thread. I am taking this as a good sign. It has also been keeping her occupied.

No comments: