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

Saturday, September 13, 2008

Update from the Ronald McDonald House

I am posting from the Ronald McDonald House (RMD). I wouldn't call it a luxury hotel, but it's very nice. It's very new, having opened in July '08. The layout of the RMD is like a dorm, except each room has their own bathroom which is very nice, especially when the kids need to go at 4 am in the morning. The only draw back is they gave us room that's made for someone in a wheelchair which means there is no bath, which the kids love, and water from the shower is splashed every where. There are a lot of rules though, like absolutely no food or drinks (except water)in the room. The kids must be accompanied by an adult at all times. No more than two visitors allowed at time for no more than 4 hours and they are not allowed up in the room. We can't be away from our room for more then 24 hours. Also, we have to wash the sheets and towels before we go. And we have to perform a choir once a day. It's reminds me of a co-op. Not that I've ever been to a co-op. The people here a nice, but the ambiance is definitely somber.

Yesterday Lauren got her stem cell (rescue)transfusion. It went well. They had a special emergency box with stuff in case Lauren had a bad reaction to the chemical that preserves the stem cells when they are frozen. It was a cool day so the runner wasn't all sweaty when she got the stem cells to us. Since the stem cells, once thawed, can only live 20 minutes or so, they literally run the stem cells to the hospital from a building located across the street. I was told there was a intricate thawing process, but when I asked the runner how they thawed it, she said they place the frozen bag of stem cells in 97 degree water (or whatever the normal body temperature is). That's it. Also, we were told the chemical that preserved the stem cells stunk like rotten garlic and would be expelled through Lauren's pores and breath, so we were preparing for the worse. However, it didn't stink that bad. It wasn't overwhelming, and it smelled more like spoiled milk. After awhile we couldn't smell it, but every time a nurse came in the room they make a comment about the smell. But..., if and when you gave Lauren a kiss, yuck!! Your first reaction was to gag. Up close, the smell was very bad.

Lauren is in a great mood this morning. She has lots of energy. They gave her medication yesterday during the transfusion that made her drowsy and she slept really well. Her counts will be dropping soon, so we have to keep her some what isolated. I think we'll end going to Grove (outdoor mall) or maybe Griffith Park. It's going to be tough to keep her occupied since she is feeling so well.

That's all for now. I'll post pictures of the RMD later.

Thanks to everyone for your continual support and prayers.

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