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, July 14, 2008

Not one of the better weekends. On Saturday, after playing hard (running around, dancing and acting goofy) all morning, Lauren developed a fever and we had to rush her to CHLA emergency room. With her blood count so low she is considered neutropenic, meaning she is susceptible to infections (she has to wear a mask whenever we're out in public or near construction sites). Her blood counts is the lowest they've ever been and is still dropping when they should be increasing. After being checked out in the emergency room they admitted her to the 4th floor, west wing of CHLA, the solid brain tumor floor of CHLA (it's shocking to see how many children have brain tumors and how bad of shape some of them are in. It reminds me of the pictures I've seen of the holocaust victims in the Nazi concentration camps), where they gave her two types of strong antibiotics. The standard procedure for a chemo patient with a fever is to keep them in the hospital for at least 48 hours after the fever breaks, allowing enough time to see if any bacterial infections grow from the cultures (Lauren still had a slight fever Sunday night). However, since Lauren's blood counts are also still dropping, they want to keep her in until her counts starts going up, too. With her blood counts being so low, they gave her a blood transfusion on Saturday, she also had a platelet transfusion on Friday (Lauren got her auntie's platelets, that she donated on Wed., which is pretty cool). What a disappointment this has been since Lauren has been doing so well lately. We were looking forward to an happy energized kid. With her being off steroids and losing weight (we're beginning to recognize her again), she has been trying to run (which of course lead to a nasty spill on Friday night, with her platelets being down, it looked really bad), since she not allowed to swim until her counts go up.

Once again I have to say what a brave girl Lauren is and what a trooper she has been. Sometimes I forget she is only 4 1/2 years old. When we were in the emergency room and found out that she was going to have spend the night at the hospital, she cried, but after we explained why it was so important, she stopped crying and accepted it. In the hospital, the nurses and the doctors were amazed how cooperative she was and how well she followed directions. When it came time for her GCSF shots, which she has been getting since Friday, Lauren job at home is to take off the wrapping from her thigh, clean the numbing cream off and then clean the area for the shot with an alcohol swab, so when she did it in front of the nurse and doctor they were genuinely amazed. The nurse kept telling me, "wow, I have never seen a 4-year-old do that. That is amazing."

Afterwards, whenever a new nurse or doctor come in to the room, they ask her, "are you the great patient everybody is talking about? I heard so much about you." I can't help but be so proud of her.

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