Lauren is still in the hospital.
She has had a bad cough for almost two months now. Several X-rays of her chest over the past several weeks haven't shown much so yesterday they decided to do a CT scan. This was her 7th or 8th CT scan in almost two years. I heard one CT scan is the equivalent of 100 x-rays but sometimes it's necessary since they reveal a lot more than x-rays and yesterday's results was a good example.
I knew something was wrong when the attending physician from the CDC came into our room. He looked a little worried. He started asking questions like, what kind of animals do we have around the house and at the grandparents. We told him, dogs, cats, horses, and birds. He asked birds? What kind of birds? Parakeet. Have you guys gone traveling? Any where on the east coast? Oh, you went to Ireland? I guess that's east. What parts? You had mold in your house? When? Camping? Where? We kept thinking, maybe if you let us in on what you're looking for we'd be help. Then he started to explain what he saw on the x-rays. He asked, "Do you want to see it?" We said, yes. So he took us over to the one of the computers. He said it's easier to explain this way. He started off on the good parts of Lauren's lungs. Which for the most part were black with very faint white lines like tiny rivers branching off. Then he showed us the area of concern. This area had bright white lines like the branches of a cherry tree with buds on the tips of branches. Then he scrolled down a little more and a huge white blob came in to view. First time I thought was "tumor." But thankfully he said, no. He said he thinks its some type of fungus. In fact he described her lungs as having a raging infection. They've started her on some type of anti-fungal medication. They want to get a culture of the lungs. Which requires putting her under while they squirt water and a tube down her throat into her lungs. They are also talking about possibly doing a biopsy on the mass.
Looking up lung disease on the internet, (something we're always warned about not doing since there is a lot of misinformation, but I did anyways) I think the mass is a fungus ball. Either way, based on the internet, fungus infections in the lungs can be very dangerous and hard to treat especially for the immune compromised. I'm discovering that battling her tumor is only half the battle. Dealing with the side affects of all the chemo and steroids can be just as dangerous as the cancer. Other stuff.
Lauren got her back brace. It looks like a medieval breastplate except for having a dragon on the front it has pretty pink flowers. She looks very buff and strong, but uncomfortable in it, however she says it makes her back feel better. Barbara (Dr. Finlay's right hand man/woman) thinks maybe she has been in pain for awhile, and that could be why she is depressed and she thinks the back brace will help a lot.
A lot of you know already via Facebook there has been a break in our home burglary case. It appears they picked up some kids trying to sell my iPhone at a local high school. After confiscating the phone, they looked up the number and found my home phone # under "Home." Since they are minors I don't know the names of the kids. We'll see what happens.
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
Wednesday, March 31, 2010
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