Believe it or not, we had a very uneventful weekend. No injuries or emergencies to report. I was going to work on the girl's playhouse and a outdoor bbq island, but thought I better not risk using any power tools, especially ones that cut.
Updates:
The reduction in Lauren's Decadron (steroids) continues to go well (knock on wood). We're still at 3 mg a day, but she hasn't complained of any headaches (knock on wood) and her speech hasn't become slurry (knock on wood). We can definitely see a difference in her appetite, which has been cut in half. We now have to encourage her to have breakfast, as opposed to her demanding breakfast. And she hasn't been finishing her dinner, where as a few weeks ago, it would take a couple of helpings of pasta to make her appetite feel satisfied. Also, while they said the Decadron isn't causing her left hand to shake, since we've starting reducing her daily dosage, her left hand doesn't seem to shake as much. In fact, even Lauren has noticed a difference. She'll hold things up and ask me to guess which hand is her weak hand. You can definitely see an improvement. And one last thing, in regard to her reducing her Decadron, we've noticed she is becoming more daring, running and diving on to ottomans, doing more spin moves (practicing her basket ball pivots and princess spins), and she has been enjoying playing dress up. Which is always nice to see.
We went to Lauren's teacher/parent orientation last week at her new school, which she'll start on August 10th (they are on the year-round program). Both Hilary and I were surprised about how much she'll be expected to know by the end of the year. It was always my hope that one day, like when she is in her 30s, she'll be able to read this blog and know how proud we are of her and how special she is. I never imagined that based on the kindergarten curriculum she'll not only be able to read her blog by the end of the school year, she'll be able to start updating it herself. It made me think about, at what age do we tell her everything? She knows she has a cancer and that she has a brain tumor in her head, but we are pretty sure (I say pretty sure, because she is more self aware than we give her credit at times), she doesn't know how serious her condition is. Also, how do we tell her and how much do we tell her? I guess having these dilemmas is better than the alternatives. It still doesn't make it any easier though.
Lauren met her new teacher, Mrs. Little. Lauren was surprised to see how tall Mrs. "Little" was, for obvious reasons. She seemed really nice, which was a relief to both me and Hilary. We did tell her the day before, at the teacher/parent orientation, about Lauren's condition, which is always awkward, but she needs to know. Lauren is very excited about starting, she said she is ready to move on from preschool. She said she wasn't learning anymore and that preschool had too much play time. She was excited about the fact she'll be doing more learning than playing. Huh? This is coming from one my kids? In any other circumstance, I would have ordered a DNA test to make sure that she was my child, but I know it's because she has a hard time keeping up with the other kids on the playground. Either way, we are relieved she is excited about starting kindergarten.
I almost forgot to mention, Granda Vernor is having a hernia operation today. While it doesn't seem like a big deal, when compared to what this family, the Fitzsimmons' included, has experienced recently ( Lauren's brain tumor and numerous other surgeries, Auntie Say's brain tumor and two brain operations, and Uncle V's prostate cancer and surgery), the doctor did tell him, that he will hate him (the doctor) for the next week. He said it is painful! Poor granda.
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
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, June 15, 2009
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