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

Wednesday, April 1, 2009

As of today, it's been exactly one year since Lauren was diagnosed with a brain tumor, which ironically, was discovered on April Fool's Day 2008. There was a time I wondered if she would make it to this date since she was only given 130 days to live at one point. But then again it's hard to believe it's only been a year since it seems like we've been dealing with this forever. I can still replay in my head (like it was yesterday) the day we got the news. I remember the ER doctor. While examining Lauren, he got a page on his beeper and right before he left the room, he turned to us and said, "I have to take this, but don't worry it's not about Lauren." I remember having a gut feeling that it was about Lauren. I then remember the doctor coming back in, taking off his glasses, rubbing his eyes and then blurting out, "Okay, here's the situation. Your daughter has a tumor." I can still hear granny gasp and crying, "oh my god." And I remember looking at Lauren's innocent face through my tears with a "what's going on?" look on her face.

The attached picture was taken at the Mall. We were on our way to Disneyland (I can barely recognize my beautiful skinny like girl with the long hair). It was taken just 6 days after Lauren had major surgery to place a shunt in her head with a tube (that drains the brain fluid), running down under her scalp, through her neck and chest, finally draining into her stomach. It was also the day before her biopsy. At this point in time (prior to Dr. Finlay/CHLA ever entering our lives), we were given no hope by the neurosurgeon at CHOC and was told the biopsy was a very risky procedure and that the risks of other than the obvious, was paralysis on her left side, but the neurosurgeon felt it was worth the risk. Looking back, I'm not sure why we allowed him to do the biopsy since he was telling us there was no hope. We were so naïve back then. I remember I wanted/need/demanded that we get pictures of the girls, since it might be the last chance to have a professional picture taken with the girls together. We bought their matching outfits at a store next to the studio. When we finally got to Disneyland that day, I remember I was determined that Lauren would not have to wait in any lines that day, and I remember how hard it was, struggling to tell the customer relations girl why we needed a special assistance pass.

So after a year, Lauren's journey continues. So far, this journey has taught us how valuable and important family and friends are. It has strengthened the relationship of existing friends, reconnected us to old friends and introduced us to new friends (from nurses at both CHOC and CHLA to people over the internet dealing with similar issues). We have also come across so many special and generous people; from strangers walking up and handing Lauren's gifts (Snow White dress in Disney), to the animal trainer inviting her back to meet and feed the killer whales, to the Clipper Spirits, to all the people that have held and supported us at fundraisers, to the angel doctor that visited Hilary at the hospital. We have no idea where this road is going to take us, but we'll continue to raise Lauren as a "normal" child. We'll discipline her when we have to (at least mommy will), shower her with as many hugs and kisses that she lets us and try to appreciate every moment with her good, or bad(bad being when she's old enough to drive and backs my car into a pole).

Angel doctor story: One night around the time Lauren was originally diagnosed, Hilary and Lauren were alone in the hospital room. It was in the middle of the night Hilary was crying to herself, while Lauren slept. Up to that point, all we had heard was Lauren had no chance, no hope. A resident she never met or seen before, came into the room and told her, "Do not give up hope. Statistics don't mean anything, they are just numbers." That was the first time anyone had said anything hopeful to her/us. Hilary felt a little bit of peace and for the first time she had some hope. It may not seem like much, but it came at time when her world was collapsing on her. She has never seen that doctor since.

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