Even though yesterday was a long day (they didn't get home until 8:30 pm) at CHLA, Lauren's chemo went very well, she didn't get or feel sick. I asked her if she had fun at the hospital and she said, "yes." In surprise, I stupidly said, "it can't be fun getting chemo." She said, "no, but I had fun." I shouldn't plant in her mind that chemo is no fun, or she is not suppose to have fun when she is getting chemo, but I was caught off guard by her response. The reason she had fun was because all of her favorite nurses were there. I was very surprised and happy to hear even Nurse Danatte was there!! We hadn't seen her in so long that I just assumed she retired, even though she is only in her mid 20s. Also, Sarah, who is in charge of the playroom, who genuinely loves the girls and treats both of them super, had a few presents for the them (three Dr. Seuss books). So, all and all, it was a good day for Lauren, despite the chemo. Marissa always loves going to the hospital because she loves the playroom.

While Lauren was having a good day it wasn't the best day for Hilary (or me) since we found out we have been giving Lauren the wrong dosage of the chemo Temodar (real name is Temozolomide) and we've been giving it to her incorrectly. Lauren has been gaining 10 lbs since January (or a 25% increase in her weight in just three months. Turns out she should have been getting 62 mg (they round down to 60 mg) a day (5-days a week), instead of the 50 mg she has been taking. We also found out from a friend from the East Coast, whose child is on a similar chemo regiment, that we are supposed to wait 3 hours after Lauren eats before she takes her chemo (we've only been waiting an hour or so). We assumed the 3-hour wait was nausea related and since she doesn't usually get sick from her chemo, we didn't worry about her stomach being empty, but now we found out the empty stomach is for absorption. So not only has her dosage not been enough, but her body was not absorbing the full amount, and then if you add her uncontrollable shaky left hand, you get two very worried and stressed parents.

Thankfully, Hilary spoke with our NP (nurse practitioner) who assured Hilary that it's okay. They are not concerned that Lauren has been getting 50 mg of Temodar a day vs. 60 mg. Also the NP was not very concerned that we weren't waiting three hours after Lauren eats before giving her her Temodar, she said an hour is good enough. Also, we re-read the instructions that come with the Temodar, written by the maker of the chemo, and it says, can be taken with or without food, as long as we're consistent. So we feel a little better. However, we won't feel totally better until after Lauren's next MRI on May 6th. My stomach is already hurting just thinking about it. I hope I don't bite of my bottom lip off as we wait for the results of her MRI.