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

We had a good weekend. On Saturday we went to the movies and saw Kung Fu Panda, which the girls loved, and then went to California Adventure on Sunday. It was good QT for the family. Lauren was a little cranky on Sunday, which made me nervous since we lowered her Steroids on Sat.

Monday, June 9. Lauren's operation to install her 2nd port went very well. It only took an hour. It was amazing to see how efficient CHLA's O-R department was. We checked Lauren in at 5:30 am, Lauren's operation was at 7:45 and we were discharged by 10:30am. We were also very impressed with every doctor in the O-R, both the resident anesthesiologist and the resident surgeon as well as both permanent doctors were awesome. We felt they really cared for Lauren and went out of there way to make us feel confident and comfortable with them.

Lauren's blood test on Monday showed that her blood count had dropped and that her count on one test was too low to start the harvesting (btw: I found out that they are not really harvesting bone marrow, but stem cells. Apparently the stem cells are produced in the bone marrow. I don't know if this is scientifically true or not, but that's the way it was explained). Since the test showed her count was low, they weren't sure if they would be able to start the harvesting on Tuesday. We were disappointed since the port was going to be uncomfortable and that she would have difficulty walking, also, we are staying in a hotel on Tuesday and Wednesday, if they weren't going to be able to do the harvesting on Tuesday it would have been nice to go home. But they said there is a chance they could still do if her count improved by Tuesday. They instructed us to give Lauren her GCFS shot early (the GCFS shots triggers her body to produce more stem cells). They also said Lauren would not only be in pain from surgery and the port, but also her bones may hurt because its been forced to produce extra stem cells. They told us to come in at 7:30am Tuesday and they will run the blood test to see if they could start the harvesting.

I also just want everyone to know what a trooper Lauren is. She cried at first on Friday when she found out she needed another port, but never cried or complained about it again. She went the whole weekend without complaining. She knows she needs it to get better and we know this because she kept trying to explain to Marissa that she was going to get another port and that it was going to help her get rid of the tumor.

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