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

Wednesday, September 23, 2009

Lauren was up at CHLA yesterday. Last week she was fighting a cold, which has affected her platelets and ANC enough to hold off giving her bi-monthly chemo and hold off her daily chemo in order to give her body a chance to recover. And even though CHLA didn't think it was necessary, but knowing how paranoid Hilary is when it comes to Lauren's platelets and ANC levels, they scheduled Lauren for an appointment yesterday to have labs drawn to check out her counts.

Platelets are needed to stop bleeding. Our biggest fear when her platelets are down is that if there was some type of bleeding near her tumor, her body wouldn't be able to stop it or any other internal bleeding for that matter. So after school, Hilary and a very unhappy Lauren headed up to CHLA. Lauren had a 30-minute meltdown in the car because she did not want to go to the hospital, which is understandable. She is getting a little tired of going to the hospital, she also knew it wasn't a regular scheduled appointment, and she was upset that granny and Marissa who aren't allowed up there anymore due to CHLA's new swine flu prevention policy, would have fun without her. She was so upset she said she didn't want to go to the playroom or even talk to her nurses. However by the time they got there and a little nap in the car on the way up, she had calmed down. While waiting for her lab results, she did get to visit with a lot of people that don't usually work on Wed. (her normal CHLA day) like Jen the NP (who I heard had to sit with her for almost a half hour, while Lauren talked about her dog Charlie) and Elizabeth in the playroom, who we rarely see but just loves the girls.

Apparently there is a reason for the phrase "Mother knows best" or "a Mother's intuition," because the lab results indicated that her platelets dropped low enough to require a platelet transfusion, however, her ANC levels improved. This again confirms why the parents need to be their children's advocate. While CHLA thinks her levels are dropping due to her being sick, there is that little bit of fear/paranoia that after so much chemo for so long, that maybe Lauren's body is just beginning to wear down. Of course, we're also worried that Lauren has pretty much been off chemo since the 2nd of July.

Other news:
Our hearts and prayers go out to the Tan Family. After battling cancer for the past 5-years, Regina past away on Sunday, a day after her 10th birthday. We've learned so much from watching how strong they were and how hard they battled this awful disease. Regina and the Tan Family will always be an inspiration to us.

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