As many of you already know, Monday turned out to be a good day. Lauren had her MRI at 1:00 and she was done by 2:15. They also scanned different parts of her brain for certain chemical signatures that help determine if the chemo is working and how her brain is reacting to the chemo. When we entered the recovery room, Lauren was already awake and was beginning to drink a Gatorade. The was a relief since the past few times Lauren was knocked out she woke up very cranky and upset, which was probably due to the steroids and her not feeling well.
Since her steroids are now down to 1 MG (from 12 MG) a day and she has been in a great mood the past week, this helped her wake up in a good mood, I think. When Lauren was feeling well enough to leave (the recovery room), the nurse told us Dr. Patel will go over the MRI tomorrow. The look on my face and Hilary's face prompted the nurse to call up to our coordinator to see if we could get the results sooner. They told us to come on up to the day hospital (the clinic where they administer the chemo, blood transfusion, etc.), and Dr. Patel would review the MRI with us. At the day hospital they drew blood for the lab test, which was nice because now they wouldn't have to draw blood on Wed. morning and it also saved an hour the next day. After wait for a little while, they told us Dr. Patel wouldn't able to review the MRI until later and to go home, but that she would call us.
That was one of the longest waits in our lives. While we tried to remain positive and only think of good thoughts, it's hard to let the bad "what if…s" thoughts creep in. Thankfully Dr. Patel called us a couple of hours later and told us the good news: The tumor has not grown and that we are on track. The reason they didn't think the tumor would shrink was because Dr. Finlay and Dr. Patel think the tumor is a slow growing tumor and would not react to the chemo like a faster-growing tumor, which they would expect to shrink. We were so happy, we decide to celebrate and allowed Grandpa Vernor to take us out to dinner to his favorite restaurant, Black Angus, which happened to be right across the street from our hotel. All of us grown-ups ordered steak, except Grandma Vernor, who ordered lobster. Unfortunately for Grandma V, since Lauren has been on steroids, her culinary horizon has expanded. We found out Lauren LOVES lobster. She gave Grandma her macaroni and cheese and ate all of her lobster. The bad thing is now when we ask her what she wants to eat, she says lobster. I had to break it to her that the only time she is ever going to have lobster again is when Grandpa V is buying.
We started Lauren's 3rd round of chemo Wednesday. Everything went smoothly and we were out by 3 pm. We met with Dr. Patel who went over the report explaining the results of Lauren's MRI. It indicates the tumor has not grown when compared to the April 2nd MRI. Me and Hil didn't catch this at the time, but…, if this is the case, we are thinking that maybe the tumor did shrink since the MRI in May (when the doctors at CHOC said the tumor grew 20%), indicating the tumor grew a little and perhaps they compared Tuesday's MRI to the one in April and not May. Another positive was that there was no swelling on the MRI. Which is good since we've been reducing her steroids every three days. It will be nice once she is off the steroids since we barely recognize her because it makes her all puffy and bloated. The only thing is, it will take 6 months for the effects of the steroids to go away. Also, we found out some disappointing news. Both Hilary and I were under the impression that the next stage, when we attack and hopefully vaporize the tumor, is incorrect. Dr. Patel does not think the tumor will shrink very much from this, if at all. It is their hope that the next step will hopefully kill the tumor, which isn't bad since Lauren has been functioning well enough with the tumor the size it is now. But this came as a shock since we both thought that the tumor would be vaporized. We also found out the next stage, if we did the one mega dose of chemo, will put Lauren in isolation (with one family member) for 30 days! We are not sure if the family member can come or go. The three mini-treatments will take a month each for a total of three months.
We were talking to another mother who's child went thru the same treatment program and she recommended, if we can, to go with the three mini-treatments since the children that she saw that went thru the mega treatment plan looked in real bad shape and it was really hard on their bodies. However, our coordinator, Anna, thinks the mega treatment plan would be the best for us, since Hil is due in the beginning of October and we can get the stage out of the way before the baby comes. She said there was no difference in the results of either treatment plan. While it may be tough with a newborn, I'm leaning towards the three mini-treatments. However, we will do whatever Dr. Finlay recommends. We have put our faith and trust into Dr. Finlay and will do whatever he thinks is best.
On Wednesday night Lauren woke up around 1:30 am and threw up. This was the first time she has had a bad reaction to the chemo since we started. But even that wasn't too bad since she fell right back to sleep.
Thursday. Everything went smoothly again and we were out by 1 pm, a record!! Lauren will have 120 MG of Temador (chemo) in a pill form tonight, Friday and Saturday night. They increased the dosage from 100 MG since she has put on 10 lbs. since May. She now weighs 44 lbs. I gave blood today. Since Lauren has received a blood transfusion and two platelets transfusion, I should have done this a long time ago. I found out that CHLA is always having a shortage of blood and platelets. And a lot of times children who are in need of blood are sent home without receiving blood until they can get some. I've decided that I am going to donate blood every time I am eligible (which is every two months) and platelets, which takes two hours to harvest.
For the record, I would like to apologize to my mother in-law for telling everyone she snores when she insists she doesn't. Of course, for someone who doesn't snore, she sure kept me and Hilary (witness) up all night with her non-snoring.
Sadly, today was Dr. Patel's (who we love and appreciate) last day. We understand that she wants to be with her family in Minnesota, but on a purely selfish level, we are really going to miss her and wish she wasn't leaving.
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 26, 2008
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