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

Friday, March 19, 2010

Long day Wednesday,...and as many of you know via Facebook, it didn't end with lobster and green beer.

This was Lauren's 1st MRI since we found out that her tumor appears to be coming back to life. For some reason I wasn't as apprehensive about this MRI as the prior 8 MRIs or so. I think it's because I already knew that the tumor was transforming into a higher grade and since Lauren has changed over the past month or so, becoming withdrawn, confused (thinking she already had the MRI the day before she had it), having accidents, etc. As bad as it sounds, I was preparing myself for the worst. I didn't get nervous until we got called into Dr. Finlay's office to discuss the results. As we walked down the hallway to our assigned room that was the first time all day that my heart really started beating hard and I felt that sick feeling in my stomach.

When Dr. Finlay finally came in to talk to us he described the MRI results as "bazaar." He said that when he initially looked at the MRI scan he was alarmed that the area of enhancement (the area that is changing into a high grade) was larger than the last time. When this area was viewed via spectroscopy (looking at the biochemistry of the tumor), it actually appeared to be necrosis (dead tissue). Dr. Finlay described it as turning to mush. Which is good, except the problem with this is that Lauren's tumor is not like a balloon, as it grew it did not pushed the good cells of Lauren's brain, it's become intertwined with it (which is one of the reasons that radiation is out of the question). So when we attack the tumor with chemo, you can get a lot of collateral damage to the good cells. This could explain Lauren's behavior change. More on that later. He did mention that on the other side of the tumor there appears to be a very small area of enhancement.

Being the optimistic person that I always am, yeah right, maybe this is the miracle that we and everybody has been graciously been praying for. A low-grade tumor is slower growing and is therefore very hard and concentrated. They think Lauren's tumor could have been there since birth. For it to get so big before any obvious symptoms appearing, Dr. Finlay thinks it had to be very slow growing, which allowed the brain to rewire itself to get around the tumor. But because it's hard and concentrated, it's harder to kill. While a high-grade tumor is aggressive and grows fast, it's not as hard and ironically can be easier to kill. I accepted the fact that Lauren will always have this tumor, it is my hope that it would just be a dead mass in her head. But now with it transforming and the dead area turning into mush, maybe there is hope that one day the tumor will disappear. Of course, this is my theory, and Dr. Finlay didn't mention a hint that this could be the case. I think I'll bring this up the next time I see him. Since he probably finds it intellectually stimulating to hear other people's theories, especially from people like me who have no medical background at all.

Now to Lauren's mood change. Since the area where the tumor is located controls her motor skills, Dr. Finlay thinks Lauren's mood changes and confusion is related to the steroids. He is calling it steroid psychosis. Me and Hilary sometime wonder if he is making some of this stuff up just to calm us. But he thinks Lauren's confusion is due to the steroids and her brain adjusting to the changing of the dosage, which is now at .3 mg twice a day. Not much. He thinks the confusion is a sign she might be getting better.

So after the MRI, we headed to Black Angus in Ontario (since the Riverside one closed) for our traditional lobster celebration dinner that we allow Granda to buy us. We didn't do it for the last two MRIs and see what happened! After dinner when we got home and I opened the door, the first thing I noticed was Auntie Hilary's (My wife Hilary's aunt and granny's sister who is visiting us from Toronto) was her suit case, which was by the front door turned upside down with all the contents emptied out. She was the last one to get in the car and I thought she was rushing to look for something. When I got back to the car I made a comment to her about that. When I carried the baby back into the house I noticed the back sliding door slightly opened. that's when it clicked. I thought, "oh sh*t!" I ran around to the garage to make sure my golf clubs were still there, and thankfully they were. I was also relieved to see my TV was still hanging on the wall. Hilary said the Wii is gone. I then noticed my laptop was missing from the kitchen table. Then it dawned on us all at once that someone could be upstairs. I then took out my 357 magnum that I always carry, okay it was only a 7 iron (I was going to pretend I had a gun just in case the bad guys read Lauren's blog like some have suggested) and slowly walked up stairs in my Bruce Lee mode (Jet Li or Jackie Chan to the younger people who read this). The master mattress was knocked off the bed, all of the dresser drawers were opened and emptied. Hilary's underwear were thrown around. I told her the bad guys were probably running around with them on their heads. Closet drawers were emptied. Based on what they took (Wii, Wii games, the girls Nintendo DS's, all the DS games, laptop, cameras, and what they didn't take, credit cards, checkbooks, flat screen TVs) it makes me believe these were young boys, probably teenagers, who were not smart enough to know how
to use the checks and credit cards, but were smart enough to know that we would have been a far away for them to get caught by us. What also is curious is why our house? My truck was in the driveway, the trailer on the curb, my other car was also parked out there, both my neighbors to the left (Lauren's friend Madysen) and the next-next door neighbor were outside most of the day. The next-door neighbor to the right has a pit bull and doberman, the house on the back of us are down below with a severe slope, which would expose anybody trying to climb up it. Who breaks into a house with cars parked in front? No strangers were walking around knocking on doors that day. My neighbors would have seen and noticed any strangers. With young kids, you're always on the alert for strangers, now a days. It just doesn't make sense how they selected our house. So maybe it's somebody that reads this blog or my facebook page. Which is pretty bad to take advantage of us like that. Most
of the stuff can be replaced, only thing that can't is 6 years of pictures. A lot of them of Lauren in the hospital. It just a continuation of our roller-coaster phase of our life right now.

Next MRI is in two months.

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