Chemo Week 4

   9pm is fast approaching, I hate this time of day, it means I have to give my daughter another shot. She is sleeping peacefully, a side effect of her new anti-nausea meds and increased dose of oxycontin. I have to wake her up and poke her with the blood thinner that is helping (we hope) to get rid of the large blood clot in her leg. Today has been a long day it began as yesterday and the day before had, with Rebekah throwing up her feeds. At least it will end with her sleeping. I have to go do her shot brb.
   This past week Rebekah had 3 kinds of chemo one of which is temozolomide, it's a pill they crush up and mix with apple juice. It's pretty damn nasty and one of the 5  days this week she had to have it she threw it up 2 times before we decided to chance clogging her feeding tube and put it down the tube and flushed with a bunch of water, it worked pretty well. She has to get it 1 hour before the other types of chemo so her gut can absorb it. (We did have one nurse who didn't know this and we ended up adding to our time there.) Temozolomide is experimental in use for rhabdomyosarcoma (rhabdo for short) but has been used for a while now in brain tumors, they have seen lots of success in rhabdo so we were willing to add it hoping it will help shrink things sooner. At stage 4 you do whatever you think will give you a chance. Vincristine is the second chemo and it's the one Rebekah will be getting the most of through her weeks of treatment. It's an IV push which means it goes in over about a minute and the nurse just does it by hand. Vincristine has the least of the immediate side effects but can only be given one time in a week. The third chemo and the one that takes the longest and has the most immediate side effects is irinotecan (affectionately known as: I run to the can.) She has to have a large amount of IV fluids before she can have it and it takes 1.5 hours to infuse after that.
   The first day of chemo this week went well Rebekah felt good walking in and by the end of the week she didn't want to move much and was preferring to be left alone by everyone. I was told that the chemo has a cumulative effect or in the words of one of the other moms,  "The chemo builds up over the week and really kicks the shit out of you." The week was long and wearing on Rebekah and me and included a night when she puked up her feeding tube which I got to learn how to put back in (fun?). Joey's birthday was yesterday and we ended up having to go to the hospital with Rebekah because she was in a lot of pain and was throwing up the pain meds we give her. At that trip we got her the new anti-nausea meds and the increase of oxy; well, not really, since I forgot that it was Sunday and that walgreens doesn't do pharmacy on Sunday so I didn't go to the hospital pharmacy to get the meds and had to wait until 8am when they open to get the drugs. / sigh So many things learned this last week.
   Tomorrow (week 5)  Rebekah gets the vincristine, so it won't take as long up at primary children's medical center, so hopeful I won't be coming home in rush hour traffic.