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, January 7, 2009

Correction from yesterday's blog. Lauren is on 10 mg of Hydrocortisone, not 1 mg that I posted yesterday. 10 mg is a little less in equivalence to the .5 mg of Decadron she was on. After talking to Anna from CHLA, she told us that she is reasonably sure that Lauren's issues, slurred speech, walking funny, and headaches are related to taking Lauren off her Decadron. While they are concerned since Lauren is in pain, it's not totally unexpected. So she changed the dosage from 5 mg in the morning to 5 mg at night to 5 mg of Hydrocortisone every 8 hours. The reason we are trying to get Lauren off steroids is because it's not good to be on steroids for a extended period of time. Some of the long term affects is a puffy face (which Lauren has) and a thing called buffalo hump in the middle of her shoulder. The reason they changed her steroids is because it is easier to wean them off Hydrocortisone than Decadron.

More stuff:

- Belle the beagle is back at our house from the grandparents. Lauren really wanted him back. I'm not too thrilled, I'm worried that Belle is going to trip Lauren when she comes down the stairs. Belle has knocked Lauren over once already when we came home because she was excited to see Lauren. Unfortunately that was the night we were coming home from dinner at Chili's and Lauren was haing a massive headache, but Belle makes her happy and that's the important thing.

- Lauren has gotten the green light from Anna to get her ears pierced. Her blood counts have recovered enough to get them done. She is waiting for her cousin Kiera to return from Ireland so they can get them done together. I wasn't too thrilled about Lauren getting her ears pierced so young, but since she doesn't have hair, I don't want her to be mistaken as a boy and make her self-conscience or upset. Thankfully Kiera's dad has also given his consent, since Lauren is so excited and wants Kiera to do it with her and since it was Kiera's idea in the first place. Hopefully Kiera doesn't chicken out, since she doesn't really like needles and beat up the last nurse who tried to give her a shot. I don't think Lauren will have a problem because we are going to put on numbing cream on their ears before they do it. As long as she has the numbing cream on she is okay with needles. But now that I said this, Lauren will probably be the one to chicken out.

- Also, our old cat, Minnie Mouse the cat, who is now living in Yucaipa with the twins, Hannah and Hailey, has a stray cat boyfriend name Buster (I think his original owner moved out of the neighborhood and just abandoned him). Lauren named him Buster because he always ate Minnie's food. Since Buster still hangs out on our front porch, the girls have now adopted him as their cat. He'll only let the girls pet him. A couple of weeks ago I noticed Buster was getting fat. I just figured it was because he had all the food to himself. But now Buster is really fat. It dawned on everybody that Buster is a Busty. We always referred to Buster as Minnie's boyfriend. It never occurred to us that he was a she and now she seems to be pregnant. So, it looks like we'll be having a Love for Lauren kitten giveaway soon. So if you want to save a kitten let us know, if can't find anyone to take them, we'll have to put them to sleep. JUST KIDDING!

- We'd also like to thank our neighbor who was taking care of Minnie while Lauren was in the RMH and hospital. Well, at least feeding a cat that looked exactly like Minnie. They didn't know we gave Minnie Mouse away. We saw the cat they were feeding at our house and we thought, Minnie? Now that cat has adopted them. Well it's kinda funny. It was really nice of them and we appreciate the gesture and the intent.

- As requested, I've updated the photo album on Lauren's blog with new pictures.

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