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

Tuesday, January 6, 2009

Happy New Year! We are definitely glad that 2008 is over with. What a tough, stressful year. I was thinking about recapping the year, but decided not to. I am just going to look forward. There is no use looking back.

Well…, Lauren is done with the tough chemo. She'll now be on a low-maintenance chemo to slowly attack the tumor. This should be a lot less harsh on her body. Dr. Finlay believes the cancer/tumor has been transformed from a grade 3 (aggressive) to a grade 2 (less aggressive). So the strategy now is to slowly hit it with a constant barrage of low dose chemo over an extended period of time (3-years). He (Dr. Finlay) believes in treating brain tumors like they treat leukemia. We are scheduled to start Lauren next phase of chemo on January 14th.

Other news:

- Something does not quite seem right with Lauren. Her speech is a little slurry, she's walking funny, she almost seems drunk at times. Her energy level is way down. We thought she would be bouncing off the walls by now since she has been off of chemo since Nov. Also, she has been complaining of headaches. Last night she cried all the way home from Chili's, saying her head hurts. It was not a whimpering crying, but a full screaming crying. Very unnerving not only to see her in pain, but worrying about the cause. The only reason we're not totally freaking out is that we've changed her steroids. We've taken her off her .5 mg of Decadron and replaced it with 1 mg of Hydrocortisone, in an attempt to wean her fully off of steroids completely. We've run into these symptoms every time we tried to take her off Decadron. She was originally put on 12 mg of Decadron in May '08 to help reduce swelling in her head. It's taken us since then to get to .5 mg. You have to slowly wean them off it. Apparently the body normally produces the amount of steroids needed naturally, but when they take it (in pill form), the body stops producing it, or something like that. I'm sure people with a medical background who read Lauren's blog are saying "what is he talking about?" Hopefully Lauren's body just needs time to adjust. It is extremely stressful seeing her like this.

- I was speaking to one of the nurses up at CHLA, talking about how Lauren was in the ICU the other day when she went septic (into shock) and how Lauren's hands and feet turned black from her body drawing blood in from her extremities to keep her core organs warm (as what happens when you get frostbite). The nurse told me how one of her patients at another hospital who went septic, lost her fingers. Can't even imagine having to explain to Lauren why they had to cut off her fingers and/or toes? We're very fortunate and lucky. We dodged a bullet there.

- Also, Lauren had been complaining that her feet itched. The bottom of her feet would turn bright bright red. She'd wake up every night at 2:30 in the morning crying her feet itched. Anna (coordinator) thinks it's was because of when Lauren was sick and her feet turned black. She thinks it's because of the capillaries in her feet opening up again (having closed when her feet turned black), which can be painful and cause an itching sensation. We were told to keep her feet warm, massage her feet and have her to wear socks to bed. This seemed to do the trick. But now she keeps asking for a foot massage. I'll ask her if feet hurt or itch, and she'll start smiling and say no, it just feels good. Now Hilary is complaining her feet itch, but I know that's because of the fungus from her athletes feet.

- Anna Evans our nurse practioner/coordinator/Dr. Finlay's left-hand woman, is leaving on maternity leave for 6-months!!! While we're happy and excited for her, on a purely selfish level, we're totally bummed. She loves Lauren and has taken such good care of us. Not sure how we'll manage without her.

- Hopefully Lauren can start going to preschool at Olive Branch again soon. I think she is on the waiting list (I better have Hilary check). She needs to be around kids her age again. I've also decided we (the family) need to stop talking to her about cancer, tumors, chemo, steroids, and medicine. I realized this when I hear her talking to her cousin Kiera about what medication she is on. Also, the other day I heard her talking to her friends, Hannah and Hailey, saying, "what I want to know is, why God gave us Brooke for a short while, only to bring her to heaven so soon?" Kids shouldn't be talking about this stuff, she needs to be talking about Hannah Montana or the Jonas Brothers.

- Bathroom update: The mold is gone and I've patched the floor and drywall (somewhat). I've tried to move the sink and vanity, but it broke in half, so now it needs to be replaced. Basically our master bathroom is now gutted. I was planning on installing tile, but found out our cheap particle subfloor can't be tiled. So we now are going to be installing vinyl tile. Hilary is not too thrilled about vinyl, but oh well, at least it's cheaper and easier to install, I think.

- Car accident update: got a letter from the insurance company that the accident was 100% my fault. No surprise there. It still didn't make me feel good when I saw it in writing. I need to coordinate when I'm going to bring it in to the auto shop to get it fixed. What a hassle.

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