the last few weeks:

    Things are going pretty well; Rebekah had inpatient chemo 2 weeks ago the chemo made her hyper and she actually felt pretty good except when she was actually throwing up. She ended up having to stay longer to get her emesis under control well enough to come home. She was still on 2 drugs for the nausea when we came home so I had to give her meds every 3 hours around the clock. And we had a third to help when that just wasn't enough. It was a long week. Then we had one day of Vincristine (the easiest chemo, lol) the next week. We asked the doctor and got permission to go visit her cousin who she hadn't seen in months, we had a fun but short visit. She got too sleepy to stay. She threw up right after we got home, and then ate a small snack. The next night (Tuesday 4/23) she spiked a fever and we had to go into the hospital, labs were drawn to see if an infection was to blame and what kind of antibiotic would work best, meanwhile they wasted no time in starting her on a good broad spectrum antibiotic and kept that up because the results came back negative. We spent the required 48 hours and then were sent home having to give her the antibiotics through her port every 8 hours and watching her temp.
   This week she was/ is supposed to have 5 days of inpatient chemo, this got pushed back from Monday to maybe starting on Wednesday because of the fever and the fact that her counts just weren't where they should have been. I took this as a longer opportunity to get her weight back up but as we all know by now Rebekah threw up her NG tube while we were in the hospital and I stupidly thought she might be able to get the calories on her own. I was very wrong and after spending all weekend begging her to eat enough; we decided to put the tube back in. This did not go well and in fact after wasting an hour and getting puked on from my hair to my feet, we did not actually get the tube back in. Tomorrow a home health nurse is coming to draw labs to see if Rebekah can have chemo on Wednesday and I will have her place the tube at that time.
  Oh I didn't mention this but we have been planning on baptizing Joey and everything seems to be falling through with that, my wonderful step mom is very sick and she can't fly or be left alone (not that I would want her to be) so my father who was planing on doing the baptism can't come. My sister in law has a conflict in her schedule and we had to work out the days so that at the very least Rebekah won't be in the hospital. Do I get to scream now? no wait, I can't I spent most of this weekend talking to a little girl about eating and yelling at boys now my throat hurts.

This is a pic from December, blue kool-aid.  Can't we just go back to this time?

Happy Day :D

We had a bunch of test yesterday to evaluate if the chemo was working, and I am so happy to say it is. :D
The tumor has gotten smaller, the lesions in her lungs are almost gone, and her bone scan was clean.
Shawn the doctors and I are so happy that the chemo is working as well as it is. And on to the next round of chemo we go; Monday She starts 2 new chemos and we have to stay over night in the hospital to get them so that she can be flushed with a ton of fluids so they won't do as much damage to her kidneys. Rebekah will also be participating in a study using some bands to see if they help with the nausea  so Shawn and I will have to keep a short record of how she is feeling a few times a day for the week. We are crossing our fingers that it works, we hate feeling like there is nothing we can do to help when she is feeling like that.

Thank you all for your thoughts and prayers.

Also I have been getting a lot of questions about what Dragon fart soup is, it's what we call cauliflower soup. One day Rebekah told me that it made her fart like a dragon. We love dragon fart soup at our house :D , I made it Wednesday night for luck and because Jonny needed something he didn't have to chew (he got braces on Monday). He thanked me.

Feeling so Thankful this week

This week we want to let you all know the things we (Rebekah and I) are thankful for. In the LDS church there is a song we sing often, "Count Your Blessings" ( http://ldshymnbook.com/hymns/241/count-your-blessings ) so I thought it might be appropriate while things are going pretty good to count them so that when things aren't so great I will have a nice list I can look at.
I am thankful ...
1.  for a husband who is willing to do whatever it takes to get through all of this, including dishes and laundry and loving me even with my moodiness, he truly is awesome.
2.  for a ward that fasts and prays, knits hats, makes beautiful blankets and is full of people willing to help in anyway we might need.
3.  that we no longer live 30 mins away from my Mother in Law's house.
4. for so many friends their prayers and loving thoughts as well as the hats and fun gifts for Rebekah and the boys
5. that we were able to see a doctor who didn't believe the first ultrasound
6.  for laughs
7.  for Rebekah's smiles
8.  That we live fairly close to Primary Children's
9.  For the power port ( I know it kind of sucks but it's way better then an IV)
10. for our old ward's support and love as well
11. bleach
12. A loving Heavenly Father who watches out for her


Rebekah is thankful for...
1.  Alisha's Cupcakes  (she just ate part of one so that's on her mind)
2.  Adventure Time
3.  Hats from friends
4.  Warm Pajamas
5.   Nice blankets people have made and the ones people have sent
6.  Tubie (her NG tube)
7.  Some foods that didn't change tastes with the chemo
8.  All the things
9.  all the doctors at the hospital and the ones that come to our house. (doctors include nurses, she hasn't made a distinction yet)
10. My daddy and his kugs

I may have to comeback and add as I have more time to think on this.
This week is Eval week she will have a bone scan and a CT on Thursday (4/ 11/2013) to see how the tumor is responding to treatment. Next week we start a new cycle and 2 new chemo drugs. She has to be inpatient at the hospital so she won't be too happy about that.
Thank you for all your thoughts and prayers,
Autumn

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.