Lauren's chemo went well Wednesday and Thursday. She didn’t get sick Wednesday night, unlike the last time, which is good. She was up late and early Thursday morning she was practicing her running. She'd run from our hotel room all the way down the hall to the other side of the hotel and then run back. Mind you it's not at Olympian speed, Marissa laps her, but she is trying and more importantly it's her idea. She used to love to run, it's nice to see her having that urge to run again.
We met with Dr. Finlay Thursday for a couple of minutes, literally. He walked in, asked how everything is going, was there any questions, described to the new doctor Lauren's situation and left. Unfortunately, Lauren and Hil had just stepped out for a second to go to the bathroom and missed him. But they didn’t miss much. It was mostly to get the new doctor, Dr. Patel's replacement up to speed. Anna, our coordinator/nurse practitioner, had talked to us and checked out Lauren prior to Dr. Finlay. She is recommending, with Dr. Finlay's concurrence, that Lauren see a neuro-optometrist due to Lauren's right eye, which is not in alignment with her left eye. Anna indicated this is something that we need to take care of sooner rather than later. We don’t want it to get worse and surgery could be an option.
We met a family yesterday in the playroom at CHLA. They have four girls. The 3rd oldest, Brianna, had a brain tumor that was connected to her brain stem and grew upward (just like Lauren). The mother was pregnant at the time when they found out Brianna had a tumor (like Hilary). All of their doctors gave her little chance or hope (like Lauren). One of the Brianna's sister is name Brooke (which is that name we picked out for the new baby). The baby that Brianna's mom was pregnant with during Brianna's chemo and surgery, her middle name is Faith, while the middle name we picked out for Brooke is Hope. Brianna's grandparents (the grandma donated blood for Lauren today, after just meeting them, which was very cool) were there every day to help out just like grandma and grandpa Vernor. The similarities between us were eerie. Brianna was diagnosed when she was 15 months old, she is now 7. After two surgeries (they were unable to remove the whole tumor since it was connected to her brain stem) and chemo, today her tumor is completely gone. They were in the hospital today for Brianna's bi-annual MRI. Hopefully this was a sign. I kept thinking as we were talking with them, I hope this is us in 6 years (not necessarily the 4 daughters part though)? But talking to them sure made me feel better and gives me a lot more hope.
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
Friday, July 25, 2008
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