Very long day yesterday. The girls (Hilary, Lauren, Marissa, and granny) left for CHLA at 6:30 am, but before they could start Lauren's chemo, Hilary had to meet with Dr. Finlay to sign consent forms. Before Dr. Finlay came in the room, Hilary told Lauren that she needed to tell Dr. Finlay about her headaches (she had them all morning and on the way to the hospital). So of course when Dr. Finlay asked Lauren how she felt, Lauren said, "good". Aiya! After hearing about Lauren's headaches, he prescribed 6 mg of Decadron as a boost, then 7.5 mg 3x a day, to level it off. Hopefully this works. So after signing the consent forms, they had to hydrate Lauren, which takes about an hour (it was 11 am by this time). Then they had to wait for the chemo. Once they got the chemo it was administered over 90-minutes (the next time they administer over 60 minutes and then 30 minutes, as long as Lauren doesn't have any adverse affects). After her first chemo was done they administered her next chemo over 90 minutes. I'm not sure if they had to hydrate again, but they did have to monitor her for an hour. They didn't get home until 8:45 pm. On the bright side, they were there long enough to see Auntie Say-Say, who had her MRI in Long Beach at 1 pm. She was bringing a copy of her MRI to Dr. Finlay.
When Lauren came in she was in a great mood. She was very giddy and hyper, kinda loopy. It always so nice to see Lauren happy and laughing. She showed me her new dance moves and how a girl came in her room at the hospital and they played some music together. Lauren got to sing songs and play the maracas.
Unfortunately, Lauren woke up at 3 am throwing up. After a quick bath and new sheets on the bed, she was back to sleep in no time. One thing good about her bald head, is we can wash her head and face at 3 am, and not worry about having to dry her hair before she gets back in bed. The reason she got sick was because right before going to be bed, she had to take one last chemo (Temador), which consisted of 4 capsules totaling 50 mg (I wish they could come in 50 mg capsules, but oh well). She'll take 50 mg Temador Monday through Friday for 3 years!! 50 mg sure seems like a lot. I hope she doesn't get sick every night for three years. We're going to all be very tired if she does.
Not sure of the results of Auntie Say-Say's MRI.
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
Thursday, January 15, 2009
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