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, February 1, 2010

When we were told last Thursday that Lauren's tumor appeared to be alive and trying to transform back into a higher-grade, more aggressive tumor, it felt like April Fools 2008 all over again -- the first day when we found out about her tumor. So when Dr. Dhall recommended radiation this time, we could feel all hope slowly slipping away. It felt like we fell all the way down the mountain after nearly a two-year climb up the toughest part of that mountain with the summit in sight.

Radiation would entail something like 30 minutes of radiation every day for 6 weeks. From the first day we met Dr. Finlay, he was adamant that Lauren was not a candidate for radiation. The size and location of her tumor would expose too much of her good developing brain to the radiation resulting in severe mental retardation, at least that's what I heard from Dr. Finlay. Hilary heard, severely handicapped. Would we want to extend her life with radiation if she didn't have the capacity to talk, or hold a conversation with us? If she was just a shell of herself? I don't know.

I'm sure everybody has a different opinion when you consider the moral, ethical and religious implications, but right now it's not the implications of what radiation could do that has gotten us down lately, it's her demeanor. Since she returned home on Thursday, her mood has not gotten any better. She rarely talks or smiles. She hasn't laughed once. She doesn't play, draw, color, or read. She sits there and watches TV, but she is not really watching it, she kinda stares off into the distance, or picks at her fingernail. When we told her that Grandma and Grandpa Nihei from the Bay Area were going to be visiting us this weekend, she said she was excited, and was happy to see them when they got here, but she soon fell silent and sat there staring off into the distance. She would say she wanted to sit near Grandma Nihei, but she wouldn't converse with her, which is so not like her. She is usually a chatterbox. Is it the tumor or her medication that is causing this? All of these issues have really gotten us down.

Then I received an email from Dr. Finlay, saying "we will NOT initiate radiation, but plan to restart chemotherapy - likely procarbazine and CCNU, as soon as Anna obtains some reassurance from Hematology." and "I am deeply sorry to learn of this turn of events; but we have gotten this far- with far less expectation of doing so, and I see no reason why Lauren cannot go further with still good quality of life." And just like that "hope" was restored. And as if on cue, Lauren started to show flashes of her old self again and even wanted to go to school this morning. While this makes me feel good that she wants to go, it does make me nervous. Thankfully Granny Vernor went with her. We are scheduled to meet with Dr. Finlay next Monday. Dr. Finlay has always had a knack of restoring hope. While nothing is guaranteed, we at least have hope again.

Other stuff:
- After 6 months of planning, it looks like we're going to be canceling our Disney Cruise, which was scheduled for March 14th. As of right now, Lauren is in no shape for international traveling. I don't even want to imagine her getting sick in the Bahamas and having to go to a Bahamian hospital. And even though we got the okay to go from Dr. Finlay, what would be the point if she didn't want to do anything and just sat there staring off into space? So we'll just wait until she is feeling better and reschedule.

- Carpe Diem! Since life can change on a dime and you never know what tomorrow will bring. We have also decided we need to start doing more things to appreciate the "now" and each other. Like short weekend trips to the snow, the beach, the mountains. Stay at the Disney hotel. Maybe a short Ensenada cruise.

- Important date. Feb. 12th. Our first father/daughter dance at Lauren's school.

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