Great weekend! We went up north to the Bay Area because on Wednesday, Auntie Say had her 2nd brain surgery at UCSF Medical Center to remove the leftover tumor that was missed during her first surgery late last year. The surgery started at 8 am on Wed. morning and was finished by 4:30 pm. During the surgery, with her head opened, they woke her up and had her talk as they pushed down on different parts of her brain. This helped insure the area they were working on didn't affect her speech and/or motor skills. Everybody was so happy to hear, that not only did the Neuro-Surgeon, Dr. Mitch Burger get all of the tumor, but that the tumor was still low grade (grade 2). Dr. Burger doesn't even think she'll need any more chemo, but of course, they'll have to consult with Sarah's oncologist, Dr. Finlay first. We're so happy for Sarah. On the flip side, it's hard not to think why Lauren's tumor couldn't be in the same location, operable and virtually cured. How awesome would that be? Sarah was out of the hospital by Friday afternoon and on a plane home, back to Orange County by Saturday evening. Except on Sunday night, she passed out while taking a showe and they had to call the paramedics and was taken to the hospital. She is okay and back at home. After the surgery, Sarah was told that she could get swelling in her brain and her speech could become slurry, but not to worry.
Since we were in the Bay Area, we thought it was would be a good opportunity to see my side of the family bcause a lot of the relatives haven't seen Lauren since she was diagnosed. My sister arranged a little impromptu gettogether at Grandma and Grandpa Nihei's house. It was so nice to see the girls playing and interacting with all of their cousins. Of course it was nice to see all of my uncles, aunts, and cousins, too.
Phoenix last weekend and the Bay Area this past weekend. After being confined to Southern California for almost a year, it's nice to be able to travel again. Of course, it's takes a little extra preparation when we leave town, we have to make sure we had the phone # and the location of the nearest Children's Hospital in both San Francisco and Oakland. We don't need to be scrambling looking for that information during an emergency (which could be a simple as a fever).
Lauren starts her physical therapy today at CHOC. She'll be going to CHOC, every Monday and Friday.
Sad news: Thomas Hearne (8 yrsold) passed way on Thursday. On March 11th, Thomas went home for the first time in 8 months under hospice care. He was only given 2-3 days. While we are heartbroken for the Hearne's Family, we are happy they were able to spend over a week with Thomas at home. Thomas had medullomyoblastoma (a variant of medulloblastoma). It was only the 55th case reported. Our sympathy and prayers go out to the Hearne's family.
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
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, March 23, 2009
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