Wednesday evening: Did I say bad news? I meant GREAT news. Our nurse Denette (pictured), who is awesome and has been our nurse for the majority of our visits to CHLA, came in and set up the tray for Dr. Patel with all of the instruments to remove the port from Lauren's leg. Dr. Patel arrived and she said, "Okay things have changed."
On Tuesday, they we able to harvest three bags of stem cells which totaled 860k. Ideally, they wanted to collect 10 million. On Wed. they harvested 7 bags, and Lauren's CN34 count (which is the blood test that helps determine if her body is producing enough stem cells to do the harvesting). Lauren's number was only 10, ideally that # should be over 20. Ten is the absolute minimum, in fact, the nurses was surprised that they had proceeded with the harvest with such a low count.
Dr. Patel told us Wednesday if the count comes in higher than 2 million then she would have Lauren come back today (Thursday) for more harvesting. So we waited for the results because if the count came back lower than 2 million then they would remove the port Wednesday night. An hour later, Dr. Patel came in with the news that they collected 2.9 million stem cells! Which means Lauren would come back today to do more harvesting and the best news of all, she didn't need to come back for harvesting again. She is done with the harvesting. I did ask, "Don't we need 10 million stem cells?" Dr. Patel said, "Ideally we like to have that much, but depending on how we proceed with the 2nd step, we don't need that much."
We found out that the 2nd step of a year's worth of chemo administered over 6 days can be broken up into one mega treatment (which lasts about a month), or two tandem treatments (2 months) or 3 tandem treatments (3-months). Three tandem treatments is not as hard on the body as the one mega treatment. For the mega treatment, they only need 2 million stem cells and 4.5 million stem cells for the 3 tandem treatments (1.5 million after each treatment). Either way, they like to have back-up stem cells just in case (Dr. Finlay will determine which treatment will be better).
The only bad thing was this kinda set off the nurses, mostly the charge nurse. Apparently harvesting is considered high risk. Any time you take that much blood out of the body, they are never sure how the body will react. CHLA's day hospital, which is the unit that handles the chemo and harvesting, is only able to handle two high-risk patients at a time. Because they didn't think Lauren would be back, they gave up her spot to another patient, and the other slot went to a patient, in their words, ABSOLUTELY NEEDED TO HAVE HIS BLOOD HARVESTED TODAY(Thursday), also the nurses were going to be short staffed. So everybody left the room to figure out if it would be possible for Lauren to come in for harvesting today. Before she left, Dr. Patel winked at us and whispered, don't worry it will work out, you'll see. In order to make this work they needed to get the unit manager's approval. We then heard Dr. Patel being paged by Anna (she is one of two coordinators for the oncology dept.). Both Hil and I were thinking, oh-oh, Dr. Patel is getting in trouble. An hour later, Dr. Patel came back in and said, "Okay it is set for tomorrow (Thursday)."
Lauren will be hooked up to the harvesting machine from 7:30 am today to 12 pm and whatever they get they get. We also found out that the only reason they were able to make this work, since they were short staffed, was because Denette volunteered to come in to work even though Thursdays are her days off. She would only agree to come in if she could be Lauren's nurse for today. We owe her.
Wednesday was a long day, we started at 7:30 am and continued until 7 pm.
Again, Lauren has been doing great. We told her since we thought we weren't coming back on Thursday that we were going to do something fun, that she could pick anything she wanted to do. She was still thinking about it when we found out she needed to come back today. But she didn't complain once, she just accepted it. The only thing she insisted on was having Ramen for dinner last night. Good thing we were staying by little Tokyo in downtown LA.
Our new saying is, "Don't dwell on the past, you can't worry about the future, today is a gift, and that is why it is called the present." We learned this from the Kung Fu Panda movie.
Also, some people have asked if we could use the stem cells from the new baby's umbilical cord (when she is born in Oct.) or from someone else. The doctors explained that Lauren's blood is okay. Unlike with leukemia patients, there is less risk of her body rejecting her own stem cells.
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, June 12, 2008
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