Lauren is still at CHLA. Here is quick rundown of her issues:
1. Bacterial infection. Lauren tested positive for a type of staph infection. We were hoping it was a false positive, but evidently it's hard to get a false positive for this type of infection. Blood drawn from her arm came back negative, which means the infection is in her port. Luckily antibiotics are very effective against this type of bacteria. So they think they won't have to replace her port, which would have required surgery.
2. CT on Thursday indicated tiny spots on the tumor. These could either be blood, or calcium. Calcium would be good, since it's formed when the tumor tissues dies. Blood would be bad since one of Lauren's chemos (Avastin) can cause bleeding which means we would have to stop Avastin. Also bleeding could clog and add pressure on the brain and could create a lot of other issues.
3. Lauren's blood pressure is high, which is caused by Avastin. Which could be bad if the spots on her tumor are indeed blood. Increased blood pressure could cause more bleeding in her brain.
4. Enlarged ventricles. These are reservoirs in her brain that drains the brain fluid the brain creates. The brain creates 200 ml a day (I think). Lauren's tumor blocks her ventricles so the brain fluid has no where to go, increasing pressure on her brain. In May '08, she had a shunt placed in her head, which pumps the fluid out of her head down her scalp, through her neck and chest, finally draining into her stomach. So enlarged ventricles could indicate her shunt is not working right and may need to be replaced.
5. They took another CT yesterday so that they can compare it with the one taken on Thursday. If the spots on the tumor are gone, that would indicate blood, if they are still there that would indicate calcium. Also they can compare the ventricles to see if her shunt is working properly. Still waiting for the results. Weekends are not the best time to be admitted since all the specialists are gone.
6. Low heart rate mostly when she is sleeping. This is a concern since this could be caused by pressure on the brain. An EKG, however, indicates her heart is healthy.
7. Eye movements. On Thursday, her eyes were locked to the left, which really put us into a panic. The tumor is located on the brain stem, which controls motor function, but she was literally awake for 26 straight hours. Her eye movement is much better now. She can look both right and left, however she can't look up. The ophthalmologist says she will never be able to move her eye up again unless her tumor shrinks.
8. MRI today. This is the biggie. This will determine if there are any changes to the tumor. It's a more detailed view of the tumor vs. a CT. To top it off, Dr. Finlay is on vacation in Paraguay for three weeks!!! Talk about bad timing. Dr. Finlay was always great about reading her MRI as soon as possible. We're unsure who and when we'll hear anything. I hope my heart can handle the stress of the wait.
So these are issues. We're very worried, stressed and bored. We miss our other children. Marissa really misses her big sister. We're worried about what Lauren is wondering about all of this since the doctors talk openly about her situation right in front of her. We trying not to worry since Dr. Finlay was not worried at all and he wasn't the one who ordered the emergency MRI. We are just going to trust Dr. Finlay. There is a reason why we have a child named after him.
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, January 25, 2010
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