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

Friday, December 4, 2009

Update:
Lauren was up at CHLA on Tuesday for a scheduled appointment, where they lowered her prednisone 2.5mg, she is now on 22.5 mg a day.  And while her counts looked good, she has another issue. It seems she gets a new problem every other month.  Para flu in July, pancreatitis in August, auto-immune problem in Oct. Ant this month? Thrush, which is basically a yeast infection in the mouth.  It's pretty disgusting looking.  Parts of her tongue is covered in white blotches.  Thrush is common in infants and children, people on steroids, and cancer patients, so it's not surprising that Lauren caught it.  She does take medicine to prevent it, but I guess with the increase dosage of Prednisone, the preventive medicine wasn't enough.  She now has to swish some medicine around her mouth 4x a day.  Just another medicine added to her long list of daily meds.  We should have caught it earlier, she did mention that her tongue hurt over a week ago, but it wasn't a constant complaint, so we didn't think it was anything.  Bad parents.  But usually we watch her closely for slurred speech, balance issues and headaches.  The doctor think a lot of these past issues are steroid related, but we have to slowly wean her off of the stuff. 

 

 

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