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, October 14, 2008

Lauren is on day 12 of 12 of cycle 2's chemo treatment. She went to the hospital yesterday and will go in again today to receive the chemo Thiotepa (via IV) and then tonight she'll get her last dose of the chemos Temador and Etoposide, at which point she is done with the chemo for cycle 2. On Friday she'll get her stem cells back and we will be staying at the Ronald McDonald's House (hopefully) for 10 straight days. Her blood count should really begin to drop in a couple of days. So far she has handled this round pretty good. While she felt nauseated a couple of times, she hasn't throw up or anything (knock-on wood), but she has woken up and had meltdowns the last couple of nights. Lauren is normally a very sweet and soft-spoken girl, but she woke up the last couple of night screaming. It's so unlike her and her scream is so full of rage it sent chills down my spine. When we asked her what was wrong she doesn't know and gets more mad. Then, just like that, she'll just fall back asleep. Just thinking about what is happening and everything that her body is going through makes me sad and stressed.

Also Lauren continues to have headaches. Her next MRI that is scheduled for Dec. 3, which would have been after her next and final cycle, is going to be moved up. While the CT scan (which they took on Oct. 6th) showed that the tumor is stable, it doesn't give the details that a MRI gives. Since the CT scan indicated the tumor appeared stable, Anna and Dr. Finlay are not that concerned, however they are moving up the MRI just to be safe. They did say that the tumor dying could also cause headaches, which would be good. They also indicated her headaches can be the result of a number of things not related to the tumor, ranging from dehydration to sinus problems. But Anna thinks that due to location of the headaches, which is coming from the back of the head, is symptomatic of sinus or allergy issues. This caused a light bulb to go on in my head. Our master bathroom, where the kids normally take a bath, has carpet all the way up against the tub (Why people do that I have no clue. The house came that way, and while we wanted to tile the bathroom we never got around to it.). Well the girls would have tea parties in the tub and would set up their tea cups along the rim of the tub. Water would run down the tub and be soaked up by the carpet. On Saturday night I pulled back the carpet around the tube and yep, I could see black mold growing. Disgusting! Apparently (per the internet), mold releases spores and is very dangerous to people with suppressed immune systems (like people on chemo). So I dragged our mattress out of the master bedroom and put it in, what would have been Brooke's room (where we have been sleeping the past couple of nights), and sealed the master bedroom. Since then, it seems that Lauren hasn't complained as much about having headaches (she did complain this morning of having one though). We have a mold inspector coming out tonight.

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