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

Thursday, May 29, 2008

Lauren started her 2nd round of chemo on Tuesday, which consisted of three types of chemo, two administered by IV (one is Carboplatin) and the 3rd (Temadore) is in capsule form. When it comes to chemo treatments, CHLA seems a lot more relaxed than at CHOC. While CHOC admitted us into the hospital for three days when we did the
1st round of chemo, and they administered the Carboplatin using a 4-hour IV drip, CHLA does it as an outpatient and uses a 1-hour drip. Even with the 1-hour drip, Tuesday was a long day. We got to the hospital at 10 am and didn't get out until 6:30 pm. So we wouldn't have to commute between Corona and LA, we got a hotel room in Pasadena. We just wanted to be near the hospital in case Lauren had a bad reaction to the chemo. We couldn't stay at the Ronald McDonald house since they only allow 4 people, and Hil's mom needed to stay with us, since Hilary can't help Lauren when she goes to the bathroom because of the chemo and Hil being pregnant. We'll be staying in Pasadena until Friday.

Wednesday's chemo treatment consisted of Carboplatin and Temadore. This time we thought we'd get to the hospital early, CHLA doesn't really have a set schedule for their chemo treatments. It's first come, first served. If we get there too late, we can spend half the day waiting for a bed. So we got to the hospital at 8 am, we beat the majority of the rush, and we got to pick the bed, which was nice. Some of the curtain rooms are really tight. When the needle was inserted into Lauren's port, they were unable to draw blood, indicating it was clogged. So they had to give her medication to unclog it, they described it as blood Draino. That took and hour. Then they had to hydrate her for an hour, and then they were finally able to start the chemo. After the chemo, they had to hydrate her again for an hour to make sure the chemo doesn't damage her kidneys. We finally go out of there at 3 pm. Lauren handled both treatments great. So far no adverse reactions, but the effects of the chemo will happen over the next two weeks. So we'll be monitoring her closely.


Since we have been under the care of Dr. Finlay, Lauren's steroid regiment has been reduced from 12 ml a day to 2 ml a day. Also, since we began reducing her steroids, we have noticed an increase in both her appetite and her 'roid rage episodes. Over the past 5 nights or so, it has gotten extremely bad. She has been unable to sleep, she always feels like she needs to pee, and she was having frequent 'roid rage episodes, 3+ times a night. With the increase in her appetite, her belly looks 9 months pregnant. Yesterday we expressed our concerns about Lauren's insomnia and that she was also having pains in the stomach when she goes to the bathroom.
Dr. Patel, one of the doctors that works with Dr. Finlay, took a look at her belly. She said, "This is very unusual. It shouldn't be this hard." So she sent us down to have it X-rayed. Later in the day, when we were coming out of the play room,
Dr. Patel saw us in the hall. She tells us to wait right there, she is going to get a room for us to talk in. Both Hilary and I had that sick feeling in our stomach. Every closed-door meeting with a doctor since all this has began have usually resulted in bad news.

Dr. Patel said she saw the X-ray of Lauren's belly, and that she has a condition called FOS - Full Of …., Poop. What a relief! Lauren is constipated. So now she is taking three different laxatives. She had a great movement this morning and her belly is already feeling much softer. When she came out of the bathroom, you could tell immediately she was feeling much better. Her sense of humor and playful personality was back. Hilary and her parents took the girls to the LA Zoo, where Lauren walked most of the day, which was good since she hadn't felt like doing much walking lately. Dr. Patel also told us during the meeting that Lauren's urine test showed a high level of sugar, which causes the person to feel like they need to pee, so she has to avoid drinking too much juices, fruit, junk food, and she also has to avoid milk or dairy products since they cause constipation. She also told us, when the kids are weaned off steroids, a lot of times their appetite and 'roid rage episodes actually increase while the body is adjusting to the new level of steroids. Hopefully when she is off the steroids and is no longer constipated, she'll be able to sleep and be less moody. The past few nights have been extremely stressful and tiring.

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