Lauren was up at CHLA yesterday for her bi-weekly chemo of Avastin and Irinotecan as well as her monthly IV of Pantamiden (sp?), which helps prevents pneumonia. It was a very long day, she didn't get home until almost 9 pm. Lauren, who normally has a real strong stomach (which I think she gets from her Irish blood) and rarely gets sick from her chemo, got sick yesterday. She did not have a good time. Since she was exhausted, tired, and sad when she got home, we decided to skip her nightly chemo, Temodar (we'll give it to her on Friday, usually her night off of chemo). Since Lauren's left hand has really been shaking lately, she can't even pick a piece of cereal out of my bowl without knocking half the bowl empty, we don’t want to skip any chemo. Just seeing how much her left hand shakes is really beginning to stress us out. We won't be able to relax until her next MRI on May 6. Waiting for the result of that one is really going to be stressful. If she was having a hard time walking, they would order an MRI immediately. What is amazing is how easily children learn to adjust. Lauren does not seem very concerned about not being able to use her left hand at all. There was only one time I ever saw her frustrated about it. She was trying to pick up an apple slice. Her hand was shaking and she couldn't grab it so she slammed her right hand down on her left hand to stop it from shaking and sent the whole plate of apple slices into the air. Me and Hil both laughed until Lauren started laughing. What else could we do?
Random stuff:
- Lauren's physical therapy (PT) is going really well. She even climbed up to the top of the rock-climbing wall. Since she started her PT we can see a big improvement especially in the way she walks downstairs without stopping on each step. At least it was going good until she sprained her ankle on my shoes, which I left in the middle of the floor. She told me it's my fault for not putting them in the shoe basket. I'm such a bad dad. Also, Lauren will be starting Occupational Therapy soon to try and work on her shaking hand.
- The other day we were all in the front yard where Lauren and Marissa were catching ladybugs with Lauren's friend and neighbor, Madyson. I was sitting on a chair chatting on the phone when I noticed Madyson's dad Rodney brushing off what I assumed was a ladybug on Lauren's back. Later that night Lauren says to me,
"Daddy, I had a bee on my back." I said, "What!? Why didn't you tell me?" She replied, "I tried, but you were too busy talking on the phone. So I slowly walked over to Rodney for help, since I didn't want to get stung." I'm such a bad dad.
- Hilary hasn't been feeling well and wanted McDonald's the other day. Since Hil was sick and always wanted McDonalds when she was pregnant with Lauren, Lauren is convinced that Hilary is pregnant. She even had Hilary lie down so that she could look inside Hilary's belly button. But she said it was too dark inside and recommends Hilary go see a doctor. Lauren also asked to see the baby namebook so she can pick out names. Very strange.
- Lauren's hair continues to grow! Very exciting and funny to see. There are blotches of hair sticking straight up. It will be so nice when we can put a ribbon in it.
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
Thursday, April 9, 2009
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment