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

Monday, July 28, 2008

Believe it or not Phase I is complete. Lauren took her last chemo (Temador) pills last night. Now it's on to Phase II and the serious chemo (not that Phase I was considered minor chemo). Lauren will have another MRI on Aug. 25th. As long as the tumor is stable (or it shrank), we'll begin Phase II in late Aug. or the beginning of Sept. While it will be nice for Lauren to be off chemo for awhile, we will be pretty busy leading up to Phase II. Since next phase is so harsh, we need to have her kidneys, eyes, teeth, hearing, and heart checked out, prior to beginning the next phase since it can damage any and/or all of them.

Looking back, the last four months have been just a rollercoaster of emotions, from shock & dread and no hope (when the tumor was discovered and that it was inoperable), to some hope (when the CHOC oncologist told us that chemo may help), to no hope (when the biopsy & MRI results came back and we were told to take Lauren home and make her comfortable), to great hope (when we met with Dr. Finlay), to no hope (when the 2nd MRI revealed that the tumor had grown 20% and once again to take her home and make her comfortable), to hope and confusion (when the CHLA doctors disagreed with the CHOC doctors' assessment of the growth and what the best way to treat the tumor), to hope and comfort (when we finally transferred Lauren to CHLA and under the care of Dr. Finlay). To say it been stressful on our family, marriage, and life would be a huge understatement. But through it all, Lauren has easily been the strongest and has handled it the best. So far, she has had four surgeries (shunt placed in her skull, to pumping fluid out of her head and into her stomach, a biopsy of the tumor, a port placed in her chest, and a temporary port placed in her leg), 7 incisions (two in the head, three in the chest, her stomach, and her thigh), three MRIs, two CT scans, two X-rays, an ultrasound, three days of blood harvesting, four rounds of chemo, two blood transfusion, three platelets transfusions, steroids, GCSF shots to her thighs, 30+ days admitted into the hospital, 24+ days of out-patient visits (to CHLA), and under the care of 15+ doctors. Sometimes I forget she is only 4 years old. Yet she never complains, or feels sorry for herself. She just accepts it, takes her medicine and has complete faith that she will be cured.

Weekend: She was a little sick this past weekend, throwing up a little on Saturday and a little on Sunday. While she was very tired and look exhausted, she was determined to play. She practicde some of her karate on a backyard punching bag that the McGowan's gave her and she went swimming on both days. She hasn't started taking swimming lesson yet, but she is getting pretty good. Now if we can just get her to breathe while she swims.

Another sign: On Sunday, out of the blue, Lauren told Hilary that half her tumor was gone. Hilary asked her, why do you say that? Lauren replied, God told me one side is gone and the other side is still there.

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