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

Monday, August 25, 2008

What a day. We needed to get up at 4am to leave the house by 5 am to get CHLA by 6:30. Made it with a minute to spare (amazing how many cars are out at the time).

Lauren's MRI was scheduled for 7:30, and required her to be put out since there would be no way she could stay still for an hour. I went into the MRI room with Lauren, since Hil can't because she's pregnant. I was asking some questions, like would it be dangerous for Hil to be in here even when the machine was off, the radiologist said "yes" that the magnet in the machine is always on and that it's "X" amount stronger than the earth's magnetic field and so forth, I just heard blah blah blah. But he did catch my attention when he said, if I still had my wallet with me all my credit cards would be de-magnetized. I was thinking great..., as I put my hand on my back pocket feeling my wallet, with all my credit cards, debit cards and gift cards that were in there. I did test my debit card and credit cards afterwards, luckily they were okay, so hopefully everything else is okay.

No matter how many times I've seen Lauren being put under, it's never easy to see her lying there, watching her eyes close as she goes under (which happens very quickly, she is under within seconds of them administering the drug) or when I leave her by herself as they escorted me out and back to the waiting room. They said it would take approximately an hour, so around 8:35 when they didn't come get us I started to get a little nervous. Then at 8:50 I faintly hear "Lauren". So me and Hil grabbed our stuff and walk up to the receptionist, who said, "there you are, I've been calling your name for 20-minutes". Man, that really ticked us off. Not only the fact that they didn't make much of an effort to get our attention (and we were anxiously watching the receptionist, waiting for them to call us) in a room with 50+ people, but just the thought of Lauren waking up by herself in a strange room without me or her mommy around, really makes me upset. This was the first time that has ever happened. But thankfully it turned out fine. She was in a good mood, talking up a storm telling the attending nurse how she needed to go the day hospital next for blood work, because her ANC count was down last week, and that she might need a blood or platelet transfusion, and Marissa was still sleeping and that she would be upset because she won't be able to go to the playroom, and on and on and on. It good to see her so social, it's the old pre-tumor Lauren.

After we got Lauren dressed we headed over to the day hospital for her bi-weekly blood tests, which showed her ANC count was down to 1,300 from 6,000 last week. This surprised me and Hil, but no one else seemed concerned. They said the reason last week's count was so high, was because she was taking GCSF shots. Since Dr. Finlay and Anna were off today wouldn't be able to review the MRI until tomorrow, we could go home. Therefore, Nurse Tina and Nurse Karen took us into one of the nurses station to de-access Lauren's port so we could go. Since we're now regulars at the day hospital, we've become friends with a lot of the nurses, so as we were in the room talking and joking with Karen and Tina, with Lauren on my lap being de-accessed, one of the other nurses poked her head in and said, don't go anywhere, Barbara (the other coordinator who covers for Ana when she is not there) needs to see you, she is waiting for a radiologist to review Lauren's MRI. When I saw the look in her eyes, and how all the nurses exchanged that "it's not good" look, combined that with Lauren's recent headaches, and also remembering what Dr. Patel once told us, that bad news happens fast, while good news takes longer, I knew there was something seriously wrong with Lauren's MRI. You could feel the air be sucked out of the room. My heart sank and my stomach hurt. Hilary burst into tears and left to go the bathroom. Karen asked if I wanted her to watch Lauren, so that I could go check on Hilary. I said, "no". I just couldn't let Lauren go and needed to hold her. Thankfully Tina went to go check on Hilary for me. After Hilary was able to compose herself she came back and we all went to the playroom. I went in with Lauren, while Hilary stayed out and call granny, who in turned called everyone. Waiting for Barbara to discuss Lauren MRI was torture. Once again Nurse Tina came to the rescue, she went into the system to check out what was going on. She could tell no one had even reviewed Lauren's MRI yet, so she called Barbara to find out what the deal was. Barbara told her she was asked by Anna, to make sure someone reviewed Lauren's MRI because she knew how nervous and anxious we get. So there was no bad news, it was just a miscommunication. When Tina told us and how sorry Barbara was I couldn't help but laugh. To me that was the best news I ever heard. What a rollercoaster ride we're on. Also it's a good thing we called granny back to let her know it was a false alarm, when we did, Uncle Steve was on Southwest's website looking for flights. While today's MRI still needs to be reviewed, at least we got our hope back!!

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