Lauren has had a set back. Since advancing her diet to solid foods after 5 days of no food or water and declining enzyme levels, Lauren's enzymes were trending up, which is not good. Normal levels should be below 100, but her levels are now in the 600s (they measure two types of enzymes). This has prompted the oncologist on call to refer Lauren to a GI (gastro intestine) doctor. He believes that the oncologist handled it properly, but thinks we started her back on foods a little prematurely. So Lauren is off food and liquids again, she is receiving her nourishment via IV. The GI doctor however, wanted to rule out cysts in the pancreas, which could cause the recurrence of the pancreatitis, so he ordered a CT scan for this morning.
So they woke her at 5:15 this morning and made her drink 18 oz. of Gatorade with contrast in preparation for her CT scan. Talk about a crabby kid. She cried, "They keep waking me mommy!" Then she held the blanket over her head, and wouldn't let us pull the covers off. It was actually kinda funny. And obviously, she gets this from her mommy who is definitely not a morning person. While waiting in the CT room (which brought back a lot of bad memories, since this is the CT that originally diagnosed Lauren's tumor in April of last year), the technician was over at a computer monitor with several other technicians going over someone else's scan ( I assumed). I heard himsay, "Oh my god." My stomach had that bad feeling. I knew it wasn't about Lauren since they hadn't done the CT yet, but I was just sad thinking of what they found on someone else's CT scan. When he walked back towards us, I looked over his shoulder to see what they were all looking at. Instead of seeing the shape of a child's skull on the screen, I saw a picture a family in the mountains. It was their vacation photos!!
After several hours of waiting, we finally got the results of the CT Scan. No cysts, only inflammation. Phew!! That means no surgery, but no food or water for 3-5 more days. Which is the best-case scenario at this point. Lauren will not be happy since she is beginning to get hungry. While it sucks for her, it makes me and Hilary happy that she is beginning to become interested in food again. They were talking about tube feeding her last week.
Other news:
Auntie Say-Say (Sarah) got engaged this past weekend. Yeah Sarah! We are very happy for you! They are planning to have the wedding after Say's hair grows back. Auntie Say will be starting her chemo treatment at the City of Hope soon (now that the treatment plan was approved by her insurance). She'll be on the same treatment plan that Lauren was on (high dose chemo with stem cell rescue). Her oncologist is Lauren's Dr. Finlay. Auntie Say also got her job back. I guess unions can be helpful at times.
We'd like to thank Uncle David for trying to visit Lauren today. I heard Uncle David, who lives in S. Orange County, was arguing with the people at CHLA that his niece was there. However, he didn't realize that Lauren was at CHOC (Children's Hospital of Orange County). He did show up at CHOC however, since he had to come back this way eventually. That was only a 2 1/2 hour detour. We appreciate the effort. I blame your sisters!
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, July 20, 2009
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