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

Thursday, October 8, 2009

I'm not sure if I posted the latest info yesterday on Lauren's blog or my facebook, everything is becoming a blur. Lauren's hemoglobin count went back up to 4.6. We saw the doctor late yesterday, but she didn't give us any indication when she felt we'd be going home. They did take a lot of blood out of Lauren yesterday to send off to different blood banks (Red Cross). Not only is she A+, but they have to match the antibodies her blood has. I'm not sure if they have to match both antibodies that are present, or just one. While there are no plans to transfuse her, they just want to make sure they have some on hand and it might take several days to find a match. I'm not sure why they didn't send out for a match a week ago Since they knew she was anemic.

The doc also freed Lauren from isolation, which is good and bad. The good is she can now go to the play room and more importantly the gift shop, and even more importantly she can visit with her little sister who is banned from the oncology floor and who she hasn't seen in over a week and a half. We'll have to hold Marissa back because she'll charge, jump and hug Lauren so hard. She usually knocks Lauren over. I am not even exaggerating. The bad, we lost our private suite. Lauren got a roommate yesterday, whom I will feel bad for if and when Lauren has one of her hour long 'roid rage meltdowns. The good, is that in the past, getting a roommate has allowed us to meet and get to know other families making the same journey as we are. Adding to (familu) networks of support never hurts.

Another good: Nurse Danatte is bringing us some of her awesome homemade red velvet cupcakes today. The bad, Marissa will probably eat mine before I get there.

No comments: