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, October 13, 2009

Long tiring weekend. Lauren is still in the hospital. Her hemoglobin levels continue to fluctuate between 4.5 and 4.7, however her doctors consider that as no change and stable. I did ask the hemo doctor (we've officially switched from being under the care of the oncology doctor to the hemo doctor on Thursday. Not sure what difference it makes though), why they don't want to transfuse (give her blood). He said, they are afraid of how her body will react to the blood. They don't want her body producing more antibodies or worse, a third and different type of antibody. They can tell her body is producing hemoglobin, but they are being attacked and killed as fast as they are being produced. The doctor wants to hold off and see if Lauren's body can overcome the bad antibodies. If she shows signs that her body can't handle the low hemoglobin levels (high heart rate, low blood pressure) they'll transfuse.

Well yesterday, Lauren's heartbeat stayed in the 130 range pretty consistently. To compare, I hooked up Lauren's monitor to my finger to see what my heart rate was and it was 68. Of course, it's hard to compare an athlete's vitals to a child's. So with her heartbeat elevated, which is a sign that her body is struggling to get oxygen (Lauren was complaining all day that her legs and shoulders hurt), they decided to risk a blood transfusion last night, before her body goes into shock. They were going to do their best to find a match (for her blood) as closely as possible.

It was a very intense and scary few hours. Watching her heart monitor going up and down. Since she had such a bad reaction to the blood the last time, they had to warm the blood first (which will be required from now on, anytime she gets blood), but they transfused the blood over 12 hours instead of 3.5 hours. In fact, it's 10:30 am on Tuesday morning and her transfusion is still not complete. However, what a difference a little blood can do!! Her heart rate dropped almost immediately after the transfusion started (90 to low 100 range). Except, I think with all the new oxygen in her body, she could not sleep last night. She was just lying there with her eyes wide open. Hilary finally just let her watch TV all night. So after that scary moment, where the worst thoughts were beginning to creep into our heads, they are now talking about sending her home on Thursday. Also we just found out that the blood was a perfect match, so they don't think (knock on wood and praying) that she'll have a reaction to it. Talk about a change in fortune.

However (there is always a however), since Lauren's hemoglobin levels are going to be low for a while, the doctors are recommending (and we are following there recommendation) that we keep both Lauren and Marissa out of school for awhile. It would be very bad if Lauren were to catch a flu right now, and I mean bad. While is for the best, it going to be sad because both Lauren and Marissa really love going to school. And we are not sure how long we'll have to keep them out either, a few weeks? A month?

Last thing:

I forgot to mention that they made us change rooms yesterday. They need our room for someone who was going to be in isolation. I asked Hilary why they were moving us (since we've been there the longest) and room was total decorated with pictures on the wall and bats & spiders hanging every where. It turns out ironically they put us in the room with the mean lady. They moved us because we're too nice and the mean lady would have made a scene. Sure.., reward the pain in the a$$es, and screw the accommodating people. Oh well.

I also forgot to mention that the hemo doc does not believe Lauren's blood issues have anything to do with her tumor or her chemo. He says this could have happened to her even if she was undergoing chemo or had a tumor. I am, however, not totally convinced that the chemo Lauren has endured over the last year and a half hasn't played a roll in all this. Of course I'm just a banker, so what do I know.

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