Lauren was up at CHLA yesterday getting her chemo. Even though the day started out with a nice surprise (Uncle Steve flew out from Arizona to spend the day with the girls at the hospital and I think he also donated blood), Lauren did not have a good day. She got really really sick -- vomiting, diarrhea, chills, fever. This was the most sick she has ever been on chemo. She wasn't even this sick when she was on the high-dose chemo. The tough part is we don't know what caused it. It could be a number of things. Lauren has had a runny nose for a few days so she is coming down with something.
While we've been successful in lowering her Decadron (steroids), ironically Decadron is also given to chemo patients as an anti-nausea drug. And the one possible cause, that makes me most concerned, one of her chemos, Irinotecan can have an accumulative affect. The girls ended up getting home around 9 pm and Lauren was so out of it. She needed to be carried in. However, once inside the house, she wanted her bath. She won't get into her jammies without a bath, she also wanted a bath because she had the chills. Chills by the way, are a huge red flag for chemo patients. It can be a sign of infection. And as we learned first hand last Dec. when we almost lost Lauren when she had a fever and chills and then went into septic shock, that's when they crash and it can be hard and fast. We were told once that one of the main reasons chemo patients die is that they, or their parents don't take the warning signs/red flag seriously. Other red flags are fevers and mouth sores. Once in bed we took her temperature, it was 99, which was the same as when she was at the hospital. Earlier in the day at the hospital, because of her temperature, they took blood samples to be cultured (it takes two days to grow the results) and they also gave her antibiotics. Since she is not neutropenic (low white cell count) she didn't have to be admitted. We were instructed to call if her temperature increased.
Around 1 am, she felt hot so we took her temperature again, it was over 103. Hilary called the hospital, but was told to give her Tylenol. Normally you're not suppose to give Tylenol to a chemo patient since you don't want to mask the fever, especially if its an infection. However, the doctor said that since Lauren is not neutropenic and had already gotten antibiotics earlier in the day, that it was okay to give her Tylenol and if the fever drops to see how she is doing in the morning. Of course, once Lauren took the Tylenol she got sick, which Hilary, since she is pregnant had to be careful not to get any of the liquid on her since it could contain chemo.
Just got a call from Hilary (8 am Thursday morning), Lauren woke up with a fever this morning. Over 103 again. They are headed back to CHLA. I wouldn't be surprised if she were admitted. Not sure what that means for our plan to trip to the Bay Area. Safety first though.
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, July 2, 2009
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