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, December 23, 2008

I wanted to get this out sooner, but with everything that happened last week with Lauren I didn't have a chance:

We (the Nihei Family) would like to thank everyone that came out to Chick-Fil-A (in Murrieta) for Lauren's fundraiser/birthday party on Thursday night (Dec. 11th). It is hard to describe how touched and amazed we were by the love, support and generosity of everybody there, from both friends and strangers. It was great meeting people, and putting a face to the names of people who have supported us through Lauren's website. We especially like to thank Leah Kaiser who organized everything, from coming up with idea, making, printing, and distributing posters of Lauren everywhere, in stores, restaurants, schools and firehouses in and around Murrieta (they even mentioned it on KFROG). We will always be grateful to everyone there for making Lauren feel so special and giving her a birthday party she'll never forget. Just to see the look on her face when she walked into the restaurant to a 100-plus people singing happy birthday to her was priceless. She loved being the center of attention and meeting everybody. Me and Hilary wanted Lauren to have a special birthday party (especially since 8 months ago, we didn't know if she'd even see her 5th birthday), but a lot of her friends were out of town, then she got sick on Friday (we were suppose to go to Disneyland) and was in the hospital for a week, so if it wasn't for everybody at Chick-Fil-A, Lauren wouldn't even have had a birthday party, we know that God had a hand in this, just like he has had hand in Lauren's life.

Well tomorrow is Lauren's next MRI (6 am), this the most important one ever. Of course, every MRI is the most important one ever. Lauren still has a slight cough which is a concern since she needs to be put under because she won't be able to stay still for 45-minutes, but they want to proceed with the MRI, because they (Dr. Finlay and Anna) said, it can't wait. We'll meet with Dr. Finlay right after, of course that means we won't see him until 3. That is not a complaint, since we know he is a busy man and we don't have an appointment (we cancelled the follow-up appointment scheduled for New Years eve, since we were going to go up to the Bay Area) and they are squeezing us in. Assuming everything is okay with the MRI, we'll go over the upcoming game plan, which I think is some kind of low dose maintenance chemo.

Lauren still seems a little tired but she is slowly coming back to her old self. She is talking nonstop again, acting silly, and laughing again (music to my ears!!). However, ever since CHOC gave her that boost of Cortisone (steroids), which was supposed to be the equivalent to the dosage of steroid she is currently taking, Lauren's appetite has been way up. First thing in the morning she asks for a bowl of cereal, followed by a bowl of pasta, followed by a complaint that she is still hungry, but doesn't know what she wants to eat. While it's nice she is eating again, it makes me nervous, since in the past, it can be scary when we change her dosage of steroids. Patients need to be weaned off steroids, or they can have a reaction, which she has had in the past. Also, constipation for her is an ongoing problem, so with her eating so much we're really monitoring her poop movements.

Other stuff:

As I mentioned, we were planning on going up to SF during the week after Christmas, while it would be nice to see my family and friends, after the scare Lauren gave us, we decided to play it safe and not go up. She is still recovering and the Bay Area seems so far away, cold and wet. We'll try and go up during spring when it's a little warmer.

To be fair, since I always give granny a hard time, whenever I can, I try and give updates on what's going on in our lives, so I have to mention the following: As embarrassing as it is, on the way to the hospital on Friday, I got into an accident. I rear-ended someone on the freeway. I would like to blame the sun being in my eyes, or the fact I was tired from all the driving I've been doing (to work, to the hospital, to home) the past week, or all stress and my mind being a 1,000 miles away, I guess it's a little bit of everything, but it was my fault. The other car had a scratch on his bumper, and my car had both a scratch on my bumper and small dent on the hood, the driver of the other car was uninsured and unemployed, so of course when I talked to my insurance agent yesterday, she told me the other guy already filed a claim and he is now claiming he is injured. Surprise-surprise. This is the first accident I've had since 1989, I just hope my dad doesn't find out.

For those of you that didn't get a Christmas card from us, that's because with all the stuff going on in the past month, I didn't have a chance to make any. Hopefully, I'll have a chance to make and send out some holiday cards next week, since I'm taking the rest of the year off.

And since I'm taking next week off, I also hope to start fixing the master bathroom which still has a big hole in the floor and in the wall.

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