Finally! Lauren's blood count/ANC has begun to go up. It was at 30, so 1,470 to go. Actually, as long as her counts reflect an increasing trend, they'll let us go home before it reaches 1,500. However, one doctor said she thinks we'll be here thru the weekend, except another doctor made a comment, "if you're still here tomorrow…." So basically we don't know when we'll get to go home. Hopefully soon.
Met with Dr. Finlay and Ana today to go over the next phase. It looks like we'll be starting Phase II's high dose chemo with stem cell rescue on Aug. 28th. We can not start it until after her MRI on Aug. 25th. Phase II consist of three tandem chemo treatments. Each treatment consists of 10 days of the chemo drug, Etoposide (taken orally). On day 5 she'll start taking the chemo drug, Temador (orally) for 5-days and on day 8 & 9 she'll get the chemo drug, Tiotepa (by IV over 3-hours). On day 13 she'll get a stem cell transfusion of her own stem cells. They also said her ANC count will rebound quicker, but that we need to stay locally for 10 days. Dr. Finlay is pretty confident that she'll be admitted for a fever, since that is what has happened during the past two chemo cycles. They also warned us that the stem cells smell like rotten garlic and fumes will be released thru Lauren's mouth. That's going to be fun, I can't wait.
One of the big risks of Phase II would be damage to the liver and kidneys, but this is not as much of a concern in the three tandem smaller high dose chemo treatment. The biggest risk from the treatment is infections. Ana said that the most common cause of death during this phase is from parents not taking the risk of infection seriously enough and they do not bring their child in soon enough when they do get a fever.
We also got some good news, Lauren does not need a spinal tap. Yeah!! One less surgical procedure. One was scheduled for the 26th because a spinal tap is on the check list. Dr. Finlay said that there is no chance the tumor has spread to the spine so he cancelled it. If we were under the Head Start study (clinical trial), the protocol requires her to have a spinal tap. However, since we messed up Lauren's eligibility to be under the study by taking some chemo while at CHOC prior to meeting with Dr. Finlay, we are not officially under the Head Start study, which is better, since there is more flexibility and we do not have to adhere to the Head Start protocol. I think of it as a custommade treatment plan. Also, since we're not under the study, Dr. Finlay is altering the chemo recipe and is canceling the chemo drug, Carboplatin, which can damage her hearing and eye sight (these were a big fear of mine, after reading horror stories of Carboplatin on the internet, which is a scary place to look for info.).
I am also glad we are not doing the "mega" high dose chemo treatment. While the three tandem treatment plan consists of three smaller dosages, she'll actually get more chemo this way (which may be more effective in killing the tumor) and there is not as much of a risk for liver or kidney damage. I keep thinking back to Lauren's stem cell harvesting in June, when after the first day they thought we weren't going to get enough stem cells and that they thought we'd have to try again a month later and Lauren would have to the port surgically reinserted back into her thigh. Then on day 2 we got enough for the "mega" treatment but not enough for the three tandem treatments, then on the 3rd day we got 3.5 million more stem cells than they were hoping or expecting, which was enough to do the three tandem treatments. Good thing Dr. Patel insisted on the 3rd day of harvesting. Without her, they were going to stop after two days. And also, thankfully Danette volunteered to come in on her day off or else they wouldn't have harvested on the 3rd day. It's amazing how things are working out.
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, August 14, 2008
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