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

Monday, October 5, 2009

Good and bad news... mostly bad:

Good: They have figured out the virus that Lauren has.

Bad: It is the CMV virus. Cytomegalovirus (CMV) is a herpes virus. It is very common, infecting up to 80 percent of people in the U.S. by age 40. Normally, it hides out in the body. This is not a problem for most people because a healthy immune system can easily control it. However, it can cause severe disease in people with HIV (human immunodeficiency virus). It's able to take advantage of a weakened immune system, which is why it's called an opportunistic infection. The most common illness CMV causes is retinitis, an eye infection that can lead to blindness. http://www.webmd.com/hiv-aids/aids-hiv-opportunistic-infections-cytomegalovirus

Bad: The virus can pass from an infected, pregnant mother to her child through the shared blood supply (umbilical cord). CMV inclusion disease of the newborn, which ranges in severity from being without symptoms to being a severe disease affecting the liver, spleen and central nervous system, with possible developmental disabilities.

Good: The Disease Control doctor said it is most dangerous to the fetus during the first trimester. He also said not to lose sleep over it. (Easy for them to say).

Bad: There doesn't appear to be any cure for CMV, at least per the internet. The doctors/nurses have warned us to be careful about what we find on the internet. The more I read about the more worried I'm getting.

Good: Hilary has an OBGYN appointment this morning. She is 34 weeks. Maybe they'll pull the baby out now.

Regular update:
Lauren's hemoglobin have declined again this morning. It is now at 4.2. The doctor told us when she was at 4.7 that at that level, adults would be comatose, but because kids' heart beat faster, her body is able to circulate her blood and oxygen fast enough for her to function. While she is looking real pale, her eyes don't look as yellow anymore. Her urine is still on the darker side. The only way Hilary and I can keep track of the color of her urine is to describe it in relation to the color of beer. So our color chart in relation to urine to beer -- it's not Guinness
dark anymore, but not at Bud light levels either, maybe Bass Ale level. The lighter the urine the less hemoglobin her body is destroying.

Despite it all, Lauren is very alert, talkative but very bored and tired. She doesn't stop doing artwork, she keeps coloring. The wall is full of her art work. The reason why they haven't given her another blood transfusion, from what I understand, is that she is stable (vital signs) and alert. By not giving her blood, they can monitor her changes in her hemoglobin more accurately to see if the steroids are working.

Speaking of steroids. On Friday, both Hilary and I expressed our concerns about increasing her Decadron with Anna (Nurse Practioner/case manager/Dr. Finlay's right hand). She indicated that there were two other steroids besides Decadron: Hydrocortisone and Prednisone. Hydrocort is the least strong of the three, and both Hydro and Prednisone are more natural compared to Decadron, which may make it easier to wean Lauren off of them. After calculating the amount of Hydrocort Lauren would need (16 tablespoons twice a day), they decided to go with Prednisone (20 mg twice a day). Anna assured me that Prednisone was just as effective as Decadron. The reason they were pushing for Decadron was because they thought we were more comfortable giving Lauren Decadron. What the heck (Sorry Mrs. Little, I know you don't like that expression)?? Talk about miscommunication.

Btw: since Lauren's hemoglobin continues to drop, they have now increased her Prednisone (steroid) to 20 mg three times a day. Good news is once her hemoglobin starts to go up, they'll start reducing her steroids. Now if only they'll start going up. Please!!

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