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, November 30, 2009


Lauren had her bi-weekly chemo the day before Thanksgiving. Her chemo went well. She didn't get, or feel sick. She is only on two types of chemos: Irenotecan and Avastin, which is administered via IV. She is no longer on Temodar, which was in pill form and taken 5 days a week. Temodar affects the immune system and could be the cause of her immune disorder and her pancreatitis issues, or these issues could be related to her steroid Decadron (which for the first time in over a year and a half, as of last Monday, she is no longer on). So until they can figure it out, or her body fully recovers, Dr. Finlay does not want to restart her on the Temador. In fact, I think he is thinking of replacing Temador with another chemo, Cisplatin (I could be wrong, if I am, Hilary will correct me when she reads this. Because she is ALWAYS right).

Also, Lauren got the swine flu shot on Wed. The first thing she asked Anna (our PA) after getting it was, "can I go back to school?" Unfortunately, Anna is recommending Lauren not start school until next year since they want Lauren to receive one more swine flu shot and her school is only in session for three weeks before they are off again for Christmas vacation, so why risk it? Marissa is getting her swine flu shot today from my doctor. They are recommending Marissa receive two also. Hilary gets her shot next week, I received my shot last week, so hopefully we're now set.

While at CHLA Hilary was talking to Sara from the playroom who was telling Hilary about an article her husband read in Muscle Magazine. It was about body builders who were paying $50 an ounce for breast milk. Which got me and Hilary thinking: at $50 an ounce x 20 oz. a day x 365 day would be $365,000 a year! No, we aren't planning on doing this! It didn't even cross my mind. What we WERE thinking is, if these people were willing to pay so much for breast milk, there must be a lot good nutrients in the breast milk for Lauren (and Auntie Say).

Finlay, still has not met her namesake, Dr. Finlay. Lauren is very anxious to introduce her to Dr. Finlay and to show off Finlay to all the nurses. Lauren has been nagging Hilary to take her to the outlets so that she can find matching outfits for them to wear when we finally do take her to the hospital. And while we named Finlay in honor of Dr. Finlay for not only saving Lauren's life but for giving us so much hope when we had none. We are, however, not going to place any pressure on our daughter Finlay to do great things other than for her to discover a cure for cancer.

Speaking of Finlay, who believe it or not is over a month old already, she is putting on weight fast. She is over 8 pounds (she weighed 5.8 lbs. at birth) and has already out-grown her newborn diapers that used to be too big for her. So far (knock on wood) she is doing great and she is a non-fussy baby. She only cries when she is hungry or when she needs her diaper changed. Other than that she just kicks back and observes everything.

Thanksgiving was mellow. We spent the day at granny and granda's house. Just the immediate family this year since Auntie Say-Say was in the hospital, therefore the Fitzsimmons spent the day at the City of Hope. Sarah was admitted on Tuesday to get her last dose of chemo before having her stem cell transplant on Friday (the day after Thanksgiving). They give her a transplant of her stem cells, because the dose of chemo is so high it destroys her stem cells. Sarah does not like receiving her stem cells back. I'm not sure if it's a mental thing or not, but she was saying she does not like the way it feels going into her body. It makes us wonder what Lauren felt when she received her stem-cell transplant, which ironically, Lauren received last year, the day after Thanksgiving, too.

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