Marissa came by yesterday and got to see Lauren for the first time since Monday, Sept. 28th. Since Lauren is no longer under quarantine, she can leave her room, but she can now go downstairs to the main lobby and the garden where Marissa is allowed. Unfortunately, Marissa was happier to see Lauren than Lauren was to see her. Lauren is still not feeling well and Marissa, who LOVES her big sister, tends to be very affectionate to Lauren, and just wants to hug and touch her. It was very sad to see Marissa crying because Lauren didn't want Marissa to touch her. Even though Lauren did allow Marissa to hug her for this picture.
I have to admit I've never seen Lauren looking this sickly before. Very pale, very cranky, and very old looking. She reminds me of a lot of her great grandmother, not grandmother. Ok granny. Lauren is definitely feeling the affects of her low blood levels. The other day when I was leaving for work, I looked down and saw how pale she was. It didn't look like she was even breathing. I put my hand in front of her nose but didn't feel anything. I had to totally resist the urge to wake her to make sure she was still alive. Sounds bad, I know. The only thing that kept me from waking her was the heart and oxygen monitor that she is constantly hooked up to, indicating that everything was fine. Nevertheless it was an awful sight and feeling.
When asked about a blood transfusion, the hemo doctors don't want to transfuse unless absolutely necessary. They feel it may do more harm than good. So as long as she's not shallow of breath and her heart rate remains stable, they just want to wait it out. They don't want to discharge her until her hemoglobin level is above 6 for a least two days. While we want her to come home, we're okay staying at the hospital. As long as they don't put one of the kids down the hall into our room. The other day the mother of that child was making a huge scene and was very confrontational with the nurses. The mother was rooming with her child in that room down the hall. She refused to move any of her stuff from one of two cabinets in the room. Talk about an uncomfortable situation. It's bad enough when you have to stay here, but to deal with that cr_p. Security had to be called up last night. It too bad, most of the families realize that if you're on the 4th floor, your child is dealing with some sort of cancer. If you're on 4 west, then it's a solid tumor. 4 east is a blood type cancer. So we all usually try and get along and help and support each other. But not this lady. I guess the only way she knows how to deal with the stress is to fight and kill. She probably just needs some sympathy. Even though she is biiiiig woman, twice the size of me, and could easily squash me, I think if I see her today I'll go over there and give her a hug. That should do the trick.
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
Friday, October 9, 2009
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