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

Tuesday, June 29, 2010

Well, Hilary and I attended a grief support meeting for families that have lost children. We were late of course, and as we walked in I felt like such a loser, surrounded by other losers. Don't get me wrong they were all very nice people, but this room was a losing team's locker room. I didn't want to be there, I wanted to either be in the winners' locker room or back out on the field, battling.

This is what I learned from the meeting:

* I am not very good at verbally expressing myself. I hate talking in front of people even if it is in front of only three other families.

* I thought maybe I'd been overreacting about the amount of sadness and grief I was still feeling, turns out people still feel the same way I do after 3+ years. It's good to know my grieving is normal, at least compared to the other family in the rooms.

* Holidays will be tough, which I figured they would be.

* Talking with the other parents about our children's treatments, and hearing how some of the other children would freak out over being accessed or given shots, reiterated how blessed we were in that Lauren's non-fear of needles sure made our weekly visits to the hospital so much easier. However, at the same time it's heart breaking to know that these innocent children have had to deal with such awful stuff at such a young age. It's just so unfair.

* I also learned that my "smart alec" sense of humor doesn't play well at a grief counseling meeting, especially when I said jokingly, after Hilary mentioned her cousin, Auntie Say also has a brain tumor, that I blame her side of the family for Lauren's tumor. I could hear the whole room gasp at that remark. I was joking!

All and all, even though I didn't want to be there, since I don't like to discuss my "feelings" (I'd rather suppress them), it was good. I think it was also good for Hilary.

No comments: