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

Friday, November 14, 2008

Lauren had her MRI at 10:30 am yesterday (her 5th MRI since April), which is always a time of high anxiety. Since she probably wouldn't be able to stay absolutely still for 45-60 minutes, she needed to be put under. They administered the anesthesia through her port while she was sitting on the MRI table, it's amazing how fast she goes under after the push. We're talking less than 5 seconds. Even though I've seen her be put under at least 10x before, I'll never get used to the sight of seeing my daughter's eyes rolling back into her head and her body going limp, or laying her down and leaving her with strangers. Since we're not allowed to be in the room or in an adjacent room during the MRI, we have to wait outside in the waiting room down the hall. The other tough part of waiting is the internal battle in your head, trying to prevent all the "what if…s," thoughts from creeping in. Looking around the waiting room you can see all the other parents having the same battle as they are waiting for their own child. It's always a relief when they call us and we can go see Lauren. She was already awake when we got to the room. She was a little groggy, but in a good mood. In the past, when she was on a lot of steroids, she would wake up screaming, so it was a relief that she was calm. She also insisted on walking and to not be pushed around in a wheelchair.

From radiology we went straight to the clinic to have labs drawn and meet with Dr. Finlay. It was around 12 pm. After sitting in the waiting room for about 2 hours I went up to the front desk to make sure they hadn't forgot about us. I talked to a doctor that I recognized. He said, "You have an appointment with Dr. Finlay on a Thursday? You guys must be special." Apparently it's tough to see Dr. Finlay on a Thursday. At around 3 pm, we were finally called and assigned an examination room. Dr. Finlay and Anna come flying in, Dr. Finlay sits down and says, "It's stable. Any questions?" After a couple of questions he was gone in flash. That's the trade off of being under a world-famous doctor!

So the results of the MRI indicates that the tumor is stable, no noticeable signs of shrinkage or growth. Hilary was a little disappointed. She wants her miracle, that the tumor be vaporized and gone, while I want that too, I'll be happy if the tumor is just good and dead. Dr. Finlay didn’t have the results of the contrast that measured the chemical changes in the brain, which would indicate whether the tumor was dead or dying. We'll get those results in a couple of weeks. We forgot the main reason for this MRI was because Lauren was having headaches, which we forgot to ask Dr. Finlay about. I think the headaches were due to the mold. Her next MRI is scheduled for Dec. 24th.

Since the MRI showed that the tumor is stable, Lauren is starting her 3rd and final round of the mega-chemo treatment (she'll be on low dosage maintenance chemo for at least a year afterwards). It's bitter-sweet that we are starting chemo again. Lauren has been doing so good. It's such a shame that when we finally get her back, we have to beat her down again. At least it’s the final round. Yeah!! But it still sucks!!

To celebrate her tumor being stable, we went to Black Angus so Lauren could have her celebratory lobster. While Hilary is not superstitous, I'm not taking any chances. The only thing was, when we got there Lauren didn't want any lobster, she wanted and ordered the chicken strips. Excitedly, Granny order the lobster, she finally got a chance to enjoy the whole lobster. Except after Lauren tried a bite, she remembered, she loves lobster!! Poor granny, she was stuck eat chicken strips. As Marissa always says "too bad, soo sad."

We ran into Marko, the guy Hilary ran into on Tuesday. He is the father who had just found out his daughter had a brain tumor. She was in surgery at the time. People who are going through what we are going through will understand this. When you have a child or family member with cancer you automatically join this "exclusive club," it's not one that anybody ever wants to be in, you just are. So when we ran into him even though I hadn't met him before, it was like seeing an old friend. He is doing much better than the last time. He said he was so distraught on Tuesday, it took him 45 minutes to walk down the hall to get to McDonald's. The good news is that the doctors believe they'll be able to remove the whole tumor. We wish them the best of luck.

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