Lauren was up at CHLA for labs and to have her lungs checked out. Anna did hear some wheezing when she listened, but both her and Dr. Finlay feel that it's nothing urgent, but of course, we're suppose to keep an eye on it.
Dr. Finlay was surprised at how well Lauren's counts were. Her platelets counts actually went up from last week. We're thinking maybe they had dropped because Lauren has been sick. It's really important to keep an eye on her platelets levels since "platelets stop bleeding" and can be very dangerous for her if it's internal bleeding, especially in her head or her tumor, which the MRI and CT scan a couple of weeks ago showed bleeding on her tumor. I think they expect that Lauren will need a few platelet transfusions during this round of chemo. I know some people have inquired, while others I have asked about donating platelets. The tough thing about platelets is 1. we don't know for sure if and when Lauren will need them. 2. they only have a shelf life of a few days. 3. donating platelets is a 2-hour ordeal. So I don't know what to say other than yes, we'll probably need them but we just don't know when. I'm planning on sending out a desperate plea on Facebook if she needs platelets and CHLA doesn't have any.
Dr. Finlay was finally able to hold baby Finlay. Marissa was not to be denied and made sure she got into the pictures.
Other stuff:
- Lauren's next MRI is scheduled for St. Patrick's days. Hopefully we'll get some good Irish luck from mommy's half of her blood.
- We've applied for handicap parking for Lauren. Probably should have done it months ago. We always assumed her mobility would get better, but until it does, why not make life a little easier for her. What finally prompted me to do it was at the father/daughter dance. Since her school is located on a slope and has limited parking, to make sure Lauren didn't have to walk up or down a steep incline, I pre-parked my car 2 hours before the dance and had Hilary come down and pick me up. We then had her drop us off at the dance. So when we left the dance we just had a short easy walk to the car. "Genius," I know. It just seemed like a lot of pre=-lanning just for a short night out.
- Dr. Finlay lowered Lauren's decadron to 1 mg in the morning and .5 mg at night. They continue to believe that Lauren's personality change is steroid related. We're praying this is the case.
- We have never asked to take this journey that we're on. We are, however, so amazed and thankful at how many people who have decided to take this journey with us. Giving us support in any way they can, from a shoulder to cry on (thanks Bill), to blood/platelets, money, gifts and food. We feel cursed and blessed at the same time. You have provided us light in our darkest hours. What I'm trying to say to everyone is, "thanks."
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, February 18, 2010
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