We met with Dr. Finlay yesterday. While he was very happy about how well Lauren was doing he was very interested to see how Lauren handled this round of chemo. Since Lauren is not officially in the Head Start clinical trials and is only following the Head Start protocol, they are able to adjust her chemo treatment. As I mentioned before, normally under the Head Start protocol she is supposed to have one "mega" chemo treatment (a year's worth of chemo over 6-days) and then be isolated for 30 days in the hospital. Since she is not officially under the program, she was able to follow the new proposed protocol (that will be starting in 2012) of three "mini" chemo treatments (still a lot stronger than the standard) and do it as an outpatient. He seemed very satisfied that the three "mini" treatments were the way to go.
Dr. Finlay also reiterated to us that the tumor will not be vaporized (while we are still holding out hope that it will be) and that Lauren will always have this mass (dead mass) in her head. He also said that he believed the tumor was a grade 2 (slow growing) and not a grade 3 (aggressive growing, grade 4 is when the cancer spreads), and ironically, that is the reason he believes the tumor can't be vaporized. A grade 3 is softer, while a grade 2 is more solid like a rock. While it was a little discouraging to hear, Hil believes that the tumor will be gone, while I hope it will be gone too, but…, I'll just be happy if it's dead. Other than being a little shaky at times and having a wandering eye (which seems better), she is functioning perfectly.
Also, Dr. Finlay seemed very tired. Since the Head Start protocol is his creation, he's always traveling to other hospitals around the world that are administering the Head Start protocol. He leaves for Brazil today. I'm not sure if it's for "holiday" or work. Hopefully it's for "holiday" since we can't afford anything happening to him. And because he is leaving for Brazil today, Hil's cousin Sarah (who was diagnosed with a brain tumor in Aug.) was racing up to CHLA yesterday to drop off a CD of her MRI (which she had done at 2:30 pm). Even though she is in her mid to late 20s and Dr. Finlay is a pediatric oncologist, she is also going to follow the Head Start protocol under Dr. Finlay's direction. He wanted to see the MRI before she started, which is set to begin on Friday.
Lauren's next MRI has been changed to 9 am Nov. 13th and will meet with Dr. Finlay afterwards to go over the results. This means her chemo will be put off until I believe the 14th, which is good. It will give her a little more time to recoup before starting the next round. Also, it means that we'll be celebrating thanksgiving at home and not at the Ronald McDonald's House or hospital.
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, October 30, 2008
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