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, October 6, 2009

Last night the nurse came in and asked if Lauren is usually premedicated before getting a blood transfusion. When we asked if Lauren was going to get a transfusion, the nurse said she was just getting Lauren ready, just in case they decide to transfuse. Lauren's hemoglobin count was at 4.2, which is the lowest she has ever been at. A few minutes later, the nurse came back in and gave us some good news, finally! The results of her 5 pm labs indicated that her hemoglobin's went up ever so slightly to 4.8 (better than them dropping). Also, her baby red blood cell counts went up (indicating that her body is making them) and her platelets went up. So that was a huge relief.

This morning results indicated that her hemoglobs remained the same at 4.8. While it would have been nice if they went up, at least they didn't drop. Hopefully this means she has stabilized and has turned the corner. Knock on wood.

Correction from yesterday's post: Hilary pointed out that Lauren is on 30 mg of Prednisone 3x a day, not 20 mg 3x a day.

Tidbit: I also forgot to mention that one of the hard parts about checking on Lauren's hemo counts is that they have to draw 3 cc of blood every time. Which is the last thing she needs, since it's blood she desperately needs.

Hilary saw her OBGYN doctor yesterday. When told about Lauren having the CMV virus, he didn't seem too concerned since Hilary isn't showing any symptoms of it. He did order blood tests as a precaution. I was thinking he might order the baby out yesterday.

Update on Auntie Say-Say
Sarah started her chemo yesterday. From what her sister Vicki told me, she handled it like a champ and even ate a cheeseburger while getting her chemo. Auntie Say who was diagnosed with a brain tumor in Aug. '08 is following the same protocol as Lauren - high dose chemo followed by stem cell transplant. She was under the care of Dr. Finlay, but is now getting treatment at City of Hope. Good job Sarah. Hang in there.

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