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, April 23, 2010

I am not sure how this blog post will come out, right now I feel so empty inside. A few people asked me to continue to post, if anything, for Marissa and Finlay's sake. To help them know about their big sister Lauren. But I don't know…..

We held Lauren's funeral almost a week ago, Saturday. We want to thank everyone who came out. I'm not sure exactly who was there. The day was pretty surreal. I kept referring to the funeral as her wedding. And then it would hit me, a day like that should have been for her wedding. It was bittersweet to meet a lot of people for the first time, who knew Lauren and us through Lauren's blog. I don't want to say that we hoped to have never have met some of you, but it was because our plan was that when Lauren was cured we were going to throw a big party and invite everyone who followed Lauren's blog. After the funeral we had a big tea party with lots of pink and balloons, flowers, finger sandwiches and dessert. Lauren had been talking about having a big girl only tea party (sorry Tyler and Owen). She wanted Uncle Steve and Uncle Mike to serve. Looking back, I don't know why we didn't do it. As one of Lauren's blog followers said who was once up near CHLA and thought about stopping by and meeting Lauren but didn't and then never did get to meet Lauren - from now on when she thinks about doing something, she is just going to do it.

I would like to thank all our family and friends who helped us set up the tea party (tons of sandwiches and dessert), the picture boards, the slide show, the readings (Garmen and Auntie Ellen). We would also like to thank Dr. Finlay, Bill McGowan, Lauren's kindergarten teacher Mrs. Little, Anna (NP), Nurse Dannette (speaking for Tina), Nurse Liza, Nurse Karen, and Nurse Cara, Lauren's cousins: AJ, Maddie, Matt, and Kiera, Lauren's medium sister Marissa, Lauren's best friend Madysen, Lauren's Starbucks friend Betsy and Granda not only for speaking, but telling wonderful stories about Lauren. We also want to thank Uncle John and Uncle Victor for their reading of a short story of a little girl. For those of you who couldn't understand them due to their heavy Irish accent, I am planning on posting the story once Hilary types it out. Garmen, the website administrator is also collecting the speeches of the speakers to post as well. We would also like to thank everybody who came out to celebrate Lauren's life, many of them from the Bay Area and as far away as Toronto, Canada.

The hardest part of the day was closing the casket and carrying it to the hearse, knowing we'll never get to see her beautiful face or hear her beautiful, high-pitched voice say she loves us again. Or see her precious smile or her proud grin like she had when she got her pre-school diploma. And most hardest, not seeing her and Marissa hug and goof around together. What was supposed to be a life-long battle/journey has ended so quickly. The burden of worrying about how Lauren would be treated in school is gone. The weekly appointments and commute to CHLA is done. The inability to make plans even a day into the future is no longer a factor. The constant worry that she might, or is getting sick is no longer a concern. You might expect that there has been a weight that has been lifted from our shoulder. But no, we were prepared to carry this forever. It wasn't even a sacrifice. That was our life. The joy of being with Lauren was all we needed. That is how special she was, at least to us. Why else would granny go to 99% of every doctor appointment and chemo treatment Lauren ever had, just to sit around for 8 hours?

And now….

As for how we are doing? Not good. There is such a huge void in our life missing right now. For the past two years our life, our universe revolved around Lauren, especially Hilary. Except for the few hours that Lauren was in school, or when Hilary was in the hospital, Hil has never left Lauren's side. Everyday that Lauren was in the hospital, Hil never left. On Wed. we had dinner, just the four of us, for the first time since the passing of Lauren. Of course, just by coincidence, we were having one of Lauren's favorite pasta dishes. That was when it really hit us how empty and incomplete our family is right now. Dinner time was some of our happiest moments together. Lauren and Marissa would play and goof around so much. Marissa would stand on the dining room bench and break into an impromptu dance & song, and Lauren would just laugh and laugh.

Over the past two days Marissa has been crying and saying how much she misses Lauren. She has been asking to go to granny and granda's house, something she rarely ask to do before. I worry that there is too many pictures of Lauren and Marissa together around the house. But then maybe it's Lauren sending her to granny and granda to make sure they are okay. Some people have mentioned maybe we should get her and everybody counseling, and maybe we will. But it's only been two weeks since Lauren left and three weeks since we found out there was no hope. So I think we're still allowed to grieve.

Sorry this post comes off as such a downer, but like I said, I feel so empty inside right now. Good thing baby Finlay is such a happy baby, she is really helping me, Hil, and Marissa. She is the only thing that brings a smile to our face and makes us laugh.

Readings will be posted on Monday.

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