Friday: Lauren went in for her bi-weekly blood count test. The tests indicate that both her white blood cells and platelets count has dropped 50% since Tuesday. The lower white blood counts means her immune system is really weak and she is more susceptible to becoming sick. We were planning on visiting her friends a pre-school, but decided it's not worth the risk of her catching something and delaying her chemo treatment or the harvesting of her bone marrow. Also her low platelet counts means her blood won't clot very easy if she cuts herself or worse, like she has internal blooding. Dr. Patel indicated that Lauren will probably need another blood transfusion on Friday.
Saturday: After starting out great on Saturday morning, Lauren was in a great mood, she had a big breakfast and was talking & joking around and then she started complaining about having a headache and she seemed really tired. This was really scary since we had reduced her Decadron (steroid) a day and half earlier. The last time she was off steroids, it was about a day and half before she started showing symptoms and was rushed to the ICU. We called the hospital's oncology hotline and was told by the on-call doctor to increase the Decadron to 1 1/2 mg twice a day from 1 mg twice a day. He said that if she continues to have a headache after two hours that we'll need to bring her in. Thankfully the Decadron incrase seemed to do the trick. Her headaches went away, but she still seemed tired. We were told that was to be expected since she hadn't gotten much sleep the past week combined with the new round of steroids.
Dr. Patel called us on Sunday to see how Lauren was doing. Even though Dr. Patel wasn't on the clock, she had called in to get a daily update on Lauren (and Dr. Finlay's) patients. We really like Dr. Patel even though she is busy she always finds the time to sit down with us and answer all of our questions, or just to reassure us things are going as planned. Unfortunately, we found out she'll be leaving the states at the end of June. We are going to miss her.
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 2, 2008
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