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, September 10, 2008

Well, we are done with the chemo for cycle one. Lauren took the last of her chemo (Temador and Etoposide) last night at home. It's a good thing that was the last of it. She is tired of taking it and is beginning to put up a fuss. Today she seems very tired and has been lying around and sleeping a lot, which is so unlike her. I guess after 12 straight days of chemo it's finally catching up to her. Dr. Finlay said that while her counts may not reflect it, she will definitely need her stem cells by Friday.

Friday will be interesting. Lauren's stem cells, which were harvested in June is now frozen and will be thawed and injected via IV back into her on Friday morning. What's interesting is the chemicals that preserve her stem cells when it's frozen reeks of rotten garlic and will be expelled through her pores and mouth and lungs. Also the stem cells have to go thru a special thawing process, which is done in a different building across the street from the day hospital, but once thawed they only have a life span of 20 minutes and it takes 15 minutes for the transfusion process, so there is runner that will grab the bag and literally run from one building to our building (in case anyone is wondering, the stem cell bag can not be transported in a cooler because they need to go thru a special thawing process). Hopefully he/she won't get hit by car running across the street or drop the bag. Also, I guess it's a risky procedure to give people a stem cell transfusion due to the chance their body will reject them (which in Lauren's case is less likely since they are her own stem cells), so a doctor (not a nurse or a technician but a doctor) has to sit with us the whole time during the transfusion. I think she is getting three bags so that'll be approximately an hour. After which we'll head over to the Ronald McDonald's house (which is a block away) and we'll be there for 10 days.

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