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

Thursday, September 10, 2009

Lauren saw the periodontist yesterday. He feels that Lauren's gums are a bit agitated and that normally the roots of new permanent teeth are typically at 50% its normal strength. He thinks they'll grow stronger in time, but recommends a thorough cleaning, however, he wouldn't do it until he's received clearance from Dr. Finlay. It's hard to really brush Lauren's teeth since her chemo makes her gums really sensitive and sometimes causes sores. But at the same time, if we don't do a good job brushing her teeth, her gums become sensitive. Catch 22.

The periodontist was very impressed with what a great patient Lauren was. As soon as she sat down in the chair she had her mouth opened as wide as it gets. He had to tell her to relax and that she did not have to open her mouth yet. After all she has been through, the trip to the dentist is by far the easiest. No accessing her port, no lab draws, no needles, no IV, no confinements, no chemo. Piece-of-cake.

This and that:
Lauren, Marissa, and Mommy got their flu shots yesterday. Lauren and Marissa will have to go back in a month to get another since they are so young and have been exposed to a lot of flu viruses (thankfully). And hopefully we'll be first in line to receive the swine flu shot since Lauren has an immune deficiency, we have a new baby on the way, and a pregnant mom.

Out of the blue, Lauren announced to me that she wanted to sleep in her new bunk bed (in Marissa's room, she didn't want the bunk bed in her room because she doesn't want Marissa to mess it up). That was a shocker. While some of you may disapprove the girls sleeping in our room, ever since Lauren's diagnosis, we've (me and Hilary) always needed to be in touching distance to Lauren. I think just to feel her breathing. And knowing that she was there brought a lot of peace and relief to us. Also, when Lauren isn't feeling well, especially when she was on the heavy dose of chemo, she'd freak out if we weren't near her. So while it makes us nervous that she is so far way (her room is over 25 feet away), it gives us hope that she is getting and feeling better (knock on wood). Of course, it was too much for Hilary, she moved a futon into the loft so that she could be closer to her. I, one the other hand, get the whole bed to myself (except for when Marissa crawls in).

Auntie Say-Say has started her chemo. They are trying to knock her stem cells down so that they can trigger her body to start producing them again, at which point they will then harvest them. Sarah will be going through the same high dose chemo therapy that Lauren went through. They'll administer the equivalent of a years worth of chemo over 6-days, which will destroy her bone marrow (or stem cells), they will then transfuse the harvested stem cell back to her, which will then restore her bone marrow.

No comments: