Great weekend. No fevers, no emergency rooms, the only disaster was our house. I think the girls played with every toy and stuffed animal they have, but it is so nice to have the family at home together. Even though Lauren for the most part was confined to the house, nothing beats sleeping in your own bed and going to the bathroom on your own toilet. Since Lauren was kept indoors most of the time, it's a good thing Hil let me buy a Wii... for the kids, of course. The girls love doing step aerobics and the hula hoop, which is good exercise. It's a way to work off excess energy and it's good physical therapy for Lauren. I think it really helps with her coordination, too. Video games have sure come a long way. The girls' other favorite game besides the Wii is playing doctor. Lauren makes Marissa be the doctor, while she (Lauren) likes to be the nurse. I guess this shouldn't be such a surprise since Lauren interacts with the nurses a lot more than the doctors.
We did take Lauren and Marissa down to San Juan Capistrano to see her Auntie who just got home from the hospital after having major brain surgery on Thursday to remove a tumor. She is doing well and looks great. She is now waiting for the pathology report to determine what follow-up treatment is needed, if any.
Correction to Friday's post. Lauren's ANC (blood levels) didn't drop from 300 to 250 (we wish they were that high), they dropped from 30 to 25. Also I forgot to mention that they lowered Lauren's Decadron (steroid) from .5 mg to .25 mg. It's amazing how important a pill about 1/8th the size of a tic-tac is. Even though we're only lowering it by 1/4 of a mg it really makes us very nervous since some of our scariest moments came after taking Lauren off her steroids.
Today Lauren has gone to the day hospital for routine blood work (she'll go again Thursday). Today's count indicates her ANC level has gone up to 460. Yeah! I'm glad they are going up since we were unable to give Lauren her GCSF shots over the weekend, like we were supposed to. After calling us to arrange a delivery time for the GCSF shots, the insurance company never answered ,or called us back after they left us a message on Saturday morning. Their answering machine said they were closed until Monday. That was very stressful and frustrating. Now they say they won't unable to get us the medicine until Thursday due to a hurricane somewhere.
Also, Dr. Finlay said normally when someone's counts has been down this low for this long, he would usually have given Lauren some of her stem cells back (that were previously harvested in June), but they don't have enough to spare. They need all of the harvested stem cells for the next phase.
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, August 18, 2008
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