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, March 12, 2009

Lauren's chemo went well yesterday. She was at CHLA to receive her bi-weekly chemo Avastin and Irinotecan via IV and then later her chemo Temodar. There was a couple of times she didn't feel good during the IV, but all and all she handled it great.

Lauren has been gaining a lot of weight. To think when all this started I was worried she'd lose weight, but she actually gained weight. This next phase of chemo is tough since a side affect of Temodar (which she gets 5 days a week for three years) is constipation. And when you combine that with her steroids, which makes her eat like a horse, you get a little kid that looks 8 months pregnant. What makes it tough is it makes her feel uncomfortable, it's tough on her knees and she can't run as well. The other day when we went to the beach, she asked Hilary, "Is my tummy supposed to hang over my bikini bottom like that?" Hilary told her, mommy's tummy does the same thing. I'm soooo lucky that Hilary has the same problem. j/k.

Other issues: Lauren's left hand is shaking, especially when she tries to lift things. I handed her a cup of water to take with her Temodar (btw: she now swallows all four large capsules at the same time), she shook out half the cup of water on her and me. While we laughed it off, it does make me stressed and concerned.

Last issue: I spoke to Lilly at Make-A-Wish (MAW) yesterday. She was the one who interviewed Lauren. I just wanted to get her thoughts on Lauren's wish. I had a feeling that the wish they were going to grant was going to be along the lines of being a "vet for the day" since Lilly kept saying Lauren really loves animals. I expressed my concerns if they were going to go down "the vet for a day" path that Lauren may be too young to fully appreciate it. I thought a vet for a day would be a better wish when Lauren was older and could read and be able to be more involved, and if that were the case, maybe it would be better to withdraw Lauren's application at this time. She indicated that she needed to speak to her supervisor and that she'll call me back. Half an hour later she called me back and indicated that she did speak to her supervisor and Lauren's wish would have to involve animals because she loves animals so much.

If she would have spoken to Lauren last week, she would be saying Lauren loves cheerleading, and a couple of weeks before that, Lauren loves George Strait. Lauren is 5 years old. If I thought that that was Lauren's ultimate wish I would have no problem with it, I would encourage Lauren to be a trainer at Sea World or a zoo keeper. Because Lilly interviewed Lauren alone, I also don't know how the questioning went. Did Lilly get stuck on animals and kept bringing animals up and did that make Lauren concentrate on animals? In any case, I told her we wanted to withdraw Lauren's application at this time, which I think really disgusted Lilly.

I think she thinks I was coaching Lauren to select a Disney Cruise. If showing Lauren a Disney Cruise DVD is coaching, then I was coaching. But that is only because I know she would have "loved" a Disney Cruise. You should have seen Lauren's eyes light up when she saw that they had swimming pool shaped and painted like Mickey Mouse, or how she wanted to do the Goofy slumber party. If I didn't show the DVD how else would she even know such a thing existed? It's not like she reads traveling publications or surfs the net. She can't read. And yes I thought a Disney Cruise would be a wonderful family experience, but that is only because I know Lauren would love it. Heck, if I wanted to go on a cruise, I personally would have just booked a trip on the Princess Cruise line out of San Pedro for $159 a person.

I guess what really irritates me is the fact that after spending an hour with Lauren, Lilly not only thinks she knows Lauren better than her parents, but she is convinced that she knows Lauren better. I am also surprised that MAW doesn't allow more parent input, especially for a young child. Their first clue should have been that Lauren's #1 wish was a guinea pig (btw: they were considering giving her a guinea pig, but decided against it, since she has so many pets). While in the big scheme of things, a MAW wish, may seem trivial, it's not. If this is Lauren's one wish, her one big opportunity, I think as her parent, I shouldn't allow her to waste it on something that we could set up ourselves. I want her to use it on something she'd never have the opportunity to do on her own and…, while I am grateful such an organization exists, I'm not going to let one MAW employee take the easy way out and just get Lauren's wish over with.

Some of you reading this may not agree with me and think I'm being ungrateful, but I keep saying Lauren was dealt a bad hand in life, so I am determined to make it as perfect as possible. I don't ever want her to feel that cancer is a negative and is preventing her from having a great childhood. So once again, I am hoping this is another blessing in disguise, that one day, when she is older, she can eventually use her wish on something she truly wants to do (like play that round of golf at Pebble Beach, with Tiger, her dad, and sister Marissa. Oh, and as to not leave out Hilary, she can be our caddy. How awesome of day would that be? Again, kidding.)

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