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, June 17, 2009

Yesterday, the girls spent the day at Disneyland with their cousins Kiera, Owen, and Liam. Since I was working, I didn't get to go, however, I'm not really too upset since I heard it was CROWDED and I don't do well in crowds. I heard at one point they stop letting people in because they were filled to capacity. And while the kids didn't go on any rides, they still had a blast. How could they not, being in Disneyland with their cousins?

Big milestone yesterday. Lauren went down the escalator coming out of the parking structure! While it may not seem like a big deal, that was the first time she has been on an escalator in over a year. She has not been on an escalator since she was diagnosed with a BT in April '08. She refused to go on them. I'm thinking it has something to do with her equilibrium. But apparently she has been feeling so good lately that she is becoming more confident and daring. Other signs she has been feeling very good and more confident, she was dancing and spinning during the Disneyland parade, running and jumping on the Joko's ottoman, wanting to play catch, excited about kindergarten, playing dress-up, and wanting to dance with me when she was playing dress up in her princess dress.

While seeing Lauren doing so well and being so happy make me very happy, there is a little part of me that gets more sad and scared when I see her doing so well. Sad because I can see how happy, goofy and silly she would be if she were a "normal" 5-year-old kid. Which gets me to thinking, why does she have to go through this in the first place? And the happier I get, the more scared I become.

One of the first lessons I learned in life is the need to put up walls (around my emotions). Big high thick walls, so that you can never get hurt. Having kids (other than my parents) was the first time I ever felt unconditional love. It was instant love from the first time I saw her heart beat on the ultra-sound monitor. I remember promising Lauren while she slept when she was a baby that I would not only take care of her, but I would never let anything harm her. Obviously, I couldn't keep that promise. When Lauren was diagnosed with her BT, consciously or subconsciously, I put up walls. While I held out hope, I remember telling myself to stop feeling sorry for yourself, enjoy and appreciate every moment now as if it were the last. I told myself that I could grieve later if things didn't go right. But now, the more and more improvements I see -- hands trembling less, her running and jumping on things, her laughing as she dances and spins around -- the more hope I get, which causes more of my protective wall to come down, but I'm scared that it could potentially be exposing me and making me more and more vulnerable to the unthinkable. At this point I wouldn't have it any other way, and besides, as a parent, when it comes to your children you shouldn't put up walls in first place.

Lauren will be at CHLA today getting her bi-monthly chemo.

No comments: