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, December 4, 2008

There has been a roller coaster of emotions at the Ronald McDonald House:

* We found out this past weekend that Thomas' (7 years old) recent MRI showed the cancer is stable and that he can now proceed with the high-dose chemo with a stem cell rescue, similar if not the same treatment Lauren is on. We were so happy to hear the good news from his mom, Trish, since he had to recently drop out of the Head Start Protocol because the cancer spread to his spine.

* As I mentioned yesterday, the excitement of the Iraqi boy getting two new prosthetic legs.

* We also found out yesterday that, Regina (7ish), who has 38 tumor spots and has been on the same chemo protocol as Lauren since July '07, just had a relapse. Hil didn't get a chance to speak for very long with her mother, she was on her way to meet with their doctor to discuss their options. Hil said she could see how distraught she was, it left a bad feeling in all of our stomachs.

* We found out yesterday that the 4-year-old daughter of a family we see frequently at the RMH who has leukemia and has been in isolation in the bone morrow transplant unit for 5-months, she is now going through a rough time right now. She'll be in the BMTU for another 3 months if she survives her current complications. We also found out that anyone, including the nurses and her parents, who visits the little girl has to wear a special mask and gown. The thought of her mom or family, not being able to touch or hold her daughter for 5 months breaks my heart.

* Luke (1 1/2 years old), who has some type of tumor in his chest that was wrapped around an artery or organ, has shrunk enough that they can now operate. His operation is today. We have become friends with him and his family. We remember the first time we saw Luke and his mom, Laura. It was right after Luke was diagnosed and they were put in the opposite bed of Lauren's room. We didn't meet them that day, but I remember the, "what if…," look in her eye. I also remember seeing her standing down the hall by herself with her arms crossed over her chest looking out the window, trying to come to grips with the situation. It brought back so much memories of the day Lauren was diagnosed. We wanted to tell her it will be alright, to not give up hope, just like other people did to us. But I also remember wanting to yell at those people, "How do you know? You don't know our situation!" Just like we didn't know Luke's situation at that time.

* We found out yesterday, that another couple, who we call the pony hair couple, at the RMH, who's child also has leukemia and in isolation in the BMTU for the past 5-months, will be getting out by this weekend.

It's tough. We're crying for some families and then we turn around and we're celebrating for others.

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