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

Thursday, February 12, 2009

Another long day at CHLA yesterday. We had a 10 am meeting with Dr. Finlay in the morning to go over Lauren's MRI and to determine wether she was healthy enough and her blood count was high enough to get her bi-weekly chemo. Dr. Finlay was running late so we didn't actually see him until 11 am. The first thing he said was that he was very happy with the results of Lauren's (most recent) MRI. The tumor is absolutely stable. Dr. Finlay also believes, in theory, that based on the spectroscopy, which measures the chemicals on and around the tumor, indicates that the tumor has been converted from a Grade 3 (aggressive) to a Grade 2 (slower growing) tumor. The goal of the low-dosage chemo she is now on is to attack the low-grade tumor, which we'll attack over the next three years. Dr. Finlay told us one time that the tumor could live a thousand years if the body could. The goal of the low-dose chemo is to give the tumor a life cycle (to turn off it's biological clock). While this is great news, I think both Hilary and I are a little disappointed. She wants her miracle and tumor to be gone, I would be happy to hear that the tumor is completely dead, of course I'd take the miracle too.

Dr. Finlay also checked out Lauren's lungs and blood count and he felt it was okay for her to get her chemo. Since we didn't see Dr. Finlay until 11, it was close to 12 by the time we were done with Dr. Finlay and back in the day hospital (same floor across the hall). By the time they put the order in, hydrated her, administered the two chemos, and the anti-infection drug via IV, it was 6:30 by the time we left the hospital. The only good thing about that, other than hanging out with Nurse Danette all day, was that me and Lauren's favorite noodle place, Sen Shin Gumi was open. While it's ramen style noodles, it is not to be confused with Top Ramen! We got home at 8:45. Marissa, who was with granny all day was already asleep, so we left her at granny's for the night. Phew! What a long day. Just 2 years and 10 1/2 months of chemo to go.

Lauren's next MRI is schedule for May.

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