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, September 12, 2008

Random stuff

- We are getting ready for Lauren's stem cell transfusion. Some people were wondering why she needs a stem cell transfusion. The reason being is that the amount of chemo Lauren received during this cycle is so much, it will destroy her bone marrow. She was originally supposed to have one mega treatment to get a year's worth of chemo over 6 days (in the hopes of vaporizing or at least killing the tumor), but that was changed to three mini treatments. That's still a lot of chemo, but it will not be as harsh on her wee little body. The stem cell transfusion will help her body reproduce her bone marrow and will also help her blood count to bounce back quickly. Afterwards we'll be staying at the Ronald McDonald's house for 10-straight days. Not sure what to expect. Someone told me the rooms are small and they have community bathrooms. But we'll see. For the price, I'm not complaining. We are just grateful they have these facilities.

- So far, Lauren is doing well. She hasn't been sick once (knock on wood). Also, it hasn't been as hard on her as I expected (knock on wood) so far. She is looking very tired with dark circles around her eyes. The chemo has an accumulative effect, so I expect each cycle to be harder and harder on her.

- Auntie Sarah, even though she is older, is going to be meet with Dr. Finlay next week to obtain a 2nd opinion on her tumor. While Dr. Finlay's primary focus is on pediatric treatment he does treat adults. After all he has been done for Lauren, our family has a lot of respect for him and we trust him.

- We were invited to Dr. Finlay 60th birthday party. Besides his family and friends, he invited his entire staff and patients. I think that says a lot about his character and commitment to his patients. While it would have been great to go, it would have been especially nice for Lauren to meet other kids her age with tumors, but unfortunately we can't go. Brooke (baby #3) is due the day of his party. We tried to change the date but everything is already set. Brooke is coming out 11:30 on Saturday, the 27th ready or not.

- We created a problem. We got Lauren so worried about germs she has become germ-o-phobic. She walks around the house with her arms up like a surgeon, so she doesn’t touch anything. She washes her hands constantly, now her hands are all chapped. She gets upset if Marissa touches her with her bum, which makes Marissa more determined to touch her with her bum. Her fork can't touch the table. Her elbows can't touch the door. If she forgets to wash her hands and she touches her mouth she freaks out and needs her mouth washed out. While it's probably better that she is worried about germs as opposed to not, it's becoming an issue. She's been having huge anxiety attacks, crying that she touched a box and that she is going to get sick and she'll have to go back to the hospital and that she doesn't like to go to the hospital because she doesn't like the food. We keep telling her it's okay, she is not going to get sick and that she still needs to be a kid.

- The other day when we were leaving the hospital, Lauren saw a small child in a wheelchair, she asked granny if she is going to need a wheelchair? It's these kinds of questions that break my heart. While she is only 4, Lauren is very sharp and I know she knows more than what we have told her and I get worried worrying about what she is worrying about.

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