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, October 16, 2009

Believe it or not, after more than three weeks in the hospital, Lauren is finally home. It is so nice to have the family back together. Marissa really missed her sister and mommy. While we are very happy to be home, we’re still very concerned about Lauren. She still looks pale, her energy level is still way down and she has a sadness about her that reminds me of the how she was right before begin diagnosed, not to mention she was complaining of a headache last night. Am I being paranoid and over reacting? Hopefully I am. Of course, it makes me nervous that she has been off her chemo for so long. However, Dr. Finlay and Anna continue to tell us that they are not concerned about her being off her chemo. Her next MRI is scheduled on Nov. 4th. But then again, yesterday was a very long day. We couldn’t go straight home because Hilary had to go take her non-stress test to make sure the baby is doing good and that there is enough fluid. Only 2 ½ more weeks. Our life is stressful and hectic enough, why not add a newborn to the mix?


I wrote this yesterday, but didn’t get a chance to post it.

When Lauren's blog was originally started and Lauren’s situation was looking dire, my main motivation was not only to give updates, but I wanted the world to know how special Lauren was and why we were hurting so bad. As she continued to do her treatments, it evolved into a real-time story of her journey through her battle against cancer. As with any journey, not only are you dealing with the unknown, but you travel to different places, deal with different conditions, and of course you meet different people. Some people you meet in passing and only know for a few minutes you end up sharing with each other what you're dealing with and where you each are headed, and then you go your separate ways never to be seen again (but you never forget them or their story). Others you travel with longer and really get to know them and form real friendships. While others you may see frequently, you may even know their story, but you never actually get a chance or opportunity to meet them or some times you don't even want to meet or know them. And when it comes to people, as you know, there are all types. As Dr. Seuss would say, "some are happy, some are nice, some are mean, the mean one is a little fat…," and so on. But you get the point. So who am I to judge people? I do see what I see and can’t help forming opinions (I guess that is judging). While it's easy to write about all the nice wonderful people we meet on this journey, not all of them are all nice and wonderful. And since this blog is about Lauren's journey (at least thru my eyes), I also should write about the not so wonderful people we meet. So where am I going with all of this? To the witch of course. I am only posting about her because we have never ever met or run across anyone like her, EVER! Much less shared a room with. We're all pretty shocked and I can’t tell you how many times our chins hit the floor from some of her antics. All I can say is the nurses on 4 west are the most patient people in the world. They work their butts off, they do an awesome job, and the majority of them love their job, love their patients, and take such good care of not only Lauren but us as well. They DO NOT deserve to be treated the way they are by this woman.

Here is few example of some of the stuff she has done that we have witnessed:

The witch gave the nurse some food to warm up in the microwave right at the shift change (The shift change is the most hectic time on the floor. This is the time when the next shift comes on, and the nurse is updating the new nurse on the condition or special circumstances about their patient). When the food didn't come back, she goes to the door and bellows down the hall, "WHERE IS MY LASAGNA?!!"


She supposedly "fell" in the bathroom and has contacted her lawyer and is going to sue to the hospital.

Supposedly a nurse left a needle on her son's (let's call him "D") bed, she took a picture of it, and is going to sue the hospital.

While the witch is out, they wheeled the huge stem cell harvesting machine in (it's as big as a upright piano) to harvest "D's" stem cells. The nurse is working her butt off, trying to arrange the room to not only squeeze the machine in, but to make sure there is a path for Lauren to get to the bathroom. When the witch returns, what is the first thing she says? Not how is D doing or what is that machine? But, "ohh…, uh-uhn..., this is not going to work. I don't do clutter".

One last thing about our roommate. While the mom is a total (unstable) witch looking for a big pay day, I feel so bad for her son "D", who seem like a good kid, but is a very quiet 3-year-old boy. Here is some of the stuff D has to deal with.

D is taken out for a surgical procedure and the witch doesn't even go. Just the thought of Lauren or Marissa waking up in a strange room, surrounded by strangers breaks my heart. And when D comes back, he's lying there and moans "mommy, mommy", the witch tells whoever she is talking to on the phone, wait minute, and then snaps. "shut up, D!".

D is left by himself for over 4 hours at a time. Can you imagine leaving a soon to be 3-year-old boy by himself just sitting in his bed watching TV? It’s not like the hospital has the staff to keep a nurse in the room all the time. But of course, he doesn't cry for mommy, what's the use? And the one time he cries for his mom when he heard her voice after she was gone for 4 hours, she snapped, “What is the problem D? You weren’t crying before.”

D throws up every night, she never once woke up to help her son, in fact she was mad that the nurse never told her.

Hilary has never seen the witch change D's diaper once. She makes the nurse do it.
Not once has Hilary heard or seen the witch ever try to comfort her child. Except the day we left. The social worker informed her that she was getting a new child seat for the car and a check for $250 from the Cancer Society to be used for D. That was the first and only time Hil ever saw her hug her kid.


What bothers us is his mom seems more interested in how to take advantage of the situation than the well-being of her son. Also her sense of entitlement is sickening. But what bothers me the most is poor D. The thought of a sick 3-year-old child fighting cancer alone is so heartbreaking.

Keeping things in perspective, no matter what we are dealing with there are always others who are worse off. That's it, that all I’m going to say. There's more, but what’s the use?

Now on a brighter note. Here is a picture of Nurse Swati, one of our favorite nurses on 4 west. BTW, the nurses at CHLA in both the day and regular hospitals are the best (of course, the nurses at CHOC are right up there too). They take such good care of Lauren and us. I don’t want to imagine how hard all of this would be without them.

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