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.

Getting into the routine

      This week was pretty low key. Not to say that there was nothing going on, we are still plenty busy keeping pain in check, making sure Rebekah is peeing, trying to make her eat, giving her the shots for her blood clot (which she frequently reminds me and Shawn that she hates), taking care of the feeding tube (too bee), helping Rebekah walk around. Oh and we had 2 sick kids this week, Victor was sick on his Birthday and we sent him to stay with Shawn's mom and dad who were so awesome to take him in and care for him with the help of my sister in law. (It's such a blessing to have his family close by, even though I know my neighbors would be more than willing to help out, it's just easier to impose on family :D. ) We brought Victor home mid week and quarantined him and Joe in what was Jonny and Victor's room only allowing them out to use the restroom and clean their teeth.
      We did go to a movie today, yes I know it's Sunday, but here in Utah that also means less people and it's flu and RSV season so that works out to be the best day to take her. Rebekah's ANC (Absolute Neutrophil Count) a measure of how her immune system is functioning, was 3.6 on Friday and that's awesome so we felt pretty safe taking her out and she had been begging to see The Croods. It was pretty good and she ate some candy and popcorn which made me happy.
      Rebekah and I are still trying to figure out how best to give her the shots she needs 2 times a day. She has been very cooperative and doesn't fight me about it but she does tell me how much they hurt and she wished it didn't. We are also working on ways to make her more comfortable with the port and the NG tube. Rebekah and I sometimes butt heads and yell at each other we are both so frustrated with how things have changed so much so quickly. She has been crying more and I know it's because of all the changes. I sometimes worry she is getting depressed then the next moment or day she is laughing at something or just coping better. She is one tough cookie.
God bless you all, and Good Night

Our First Fever (sorry for the length)

       We got home from the hospital on Saturday (3/9) with the expectation that we would not be back for a few weeks when she starts a new chemo set she hasn't had before. On Tuesday (3/12) Rebekah got herself out of bed and walked / stumbled (some of the drugs she is on make he look like a tiny drunk) to the couch in the living room. I helped her get up and felt like she was warm so I took her temp and she was 101.6 I couldn't believe it so I checked her other ear, same result, shaking my head I went and got the old thermometer it read 38.8 c. I didn't need to convert it to know it was in the range they told me I had to call about. I found her discharge papers still packed in one of the bags from the hospital, and called the number for the Hem-Onc clinic at primaries and called they very patiently told me to put the Emla cream on her port, cover it with the special dressing or plastic wrap and head into the clinic making sure to put her mask on before she comes into the hospital. I am seriously freaked out because so many things I have read online say that she needs to have antibiotics within 2 hours of spiking a fever or she could die. I pack her into the car as quickly as I can, text my husband that we are heading up to the clinic start heading out. I had almost no gas in the van so we had to stop and get gas so we could make the 60 miles up to the clinic, I vow to myself that I will never let my van get below half full ever again.
         We arrive safely at the hospital Rebekah is wearing nothing but a white tee shirt, a pink blanket and her mask, I park the van and carry her into the hospital half running, the security team at the front desk don't bother to ask where we are heading and the people waiting at the elevators let us take the fist one that comes by ourselves. I get up to the clinic and head in the wrong door but the moms that see me let the nurses know I need help. They direct me to the front desk. I tell them her name and they direct us into a room and ask if her port is ready to access. they take her temp, access her port draw for the standard set of labs and start her on a bag of fluid and their standard big coverage antibiotic. I feel less scared because it's only been and hour since we left our house, these guys don't mess around with fevers in cancer patients. Shortly after they brought in a urine sample cup and filled it from her catheter. About 30 mins after we got there a doctor came in to see us and talk to us about what she thought might have caused the fever. She also had some of the labs back and said that her ANC (a magic number that has to do with the big gun white blood cells) was up from Saturday a very good sign, and that she was wasn't dehydrated and her liver and kidney functions were good. And the test that they do for bacteria in the blood wasn't back yet but some of the indicator tests looked like it wouldn't be that. She told me that she thought it was the catheter that was the problem and that it would take at least overnight to figure out what should be done about it.
        I texted  Shawn and asked him to be the one to stay that first night with her, I know he has hated being away from her when important things are happening and I was exhausted. they get us settled back in ICS (it's just down the hall) and we start the waiting. Nothing of note happens that night that I am aware of Shawn says it was a long night when I get there that next morning after dropping the boys off to school. He leaves for work and shortly after that I get called out to rounds with the doctors. they talk about the bacteria that came back in her urine it was only one type (that is kind of a rare thing usually it's a whole mix so they want to wait and see what it is then start her on an antibiotic that is more specific for it. They also want to see if the tumor has shifted or shrunk any so they can remove the catheter so they schedule an ultrasound. A few hours later we head down to ultrasound and they look at the tumor next to the old ultrasound it's the same size and in the same place causing the same amount of bladder displacement but it has more necrosis in it. Happy dance the tumor is dieing, the nurse, Kathy, does a little raise the roof thing to celebrate with me, but the radiologist says he doesn't think that the catheter will be able to come out :( . We head back to the room to wait. The next day a doctor comes to tell us that the bacteria causing her infection in called klebsiella and it likes to stick to plastic so he wants to take out the catheter while we treat the infection and cath her intermittently for a day or so to beat it down with IV antibiotics then put the foley back in and send her home with oral antibiotics oh and he says Rebekah is very underweight and he wants to put a feeding tube down her nose and he would like that done tonight (3/14). I tell him that I would not like to come home with 2 tubes in my daughter and he tells me he thinks it's very unlikely she will be able to pee well enough on her own to keep her kidney function good enough to deal with the chemo. So the foley comes out and the NG tube goes in shortly after that. Rebekah didn't handle the NG tube well but was very glad not to have the catheter. She threw up the tube at about 8pm and just after the nurse pulled it out of her nose she said  "We should have asked  Heavenly Father to help me not puke up my tube." she said it softly and I didn't hear her so I asked her to repeat herself and so she said it again. (The things we need babes to teach us.) The nurse left the room to get a new tube to place it again. Rebekah and I prayed together that she would be able to pee, that she would not need to have the catheter again and that she wouldn't gag up her tube again. The nurse came in and replaced the NG tube.
       Rebekah didn't gag anymore and the next morning (3/15) I found out that her out put (pee) was 1000cc and her input (from the NG and IV) was 900cc. Kathy did a little raise the roof with me. {side note: the nurses on that floor can request a patient if they want to.}  I didn't get called out when they did rounds that morning but 2 doctors came in after and told me how shocked they were that she was able to pee at all last night, and that she would not be going home that day because she had a fever during the night. (Yes, I sleep that soundly at the hospital; the nurse came and did vitals and changed diapers several times and didn't wake me.) So one more night and she would be home. I called Shawn and told him of the pee and other news and asked if he would take that night he did, and brought her home to me on Saturday with no catheter :D.
  This tells me God hears and answers the prayers of children and mothers and that he loves my little girl. This whole event was a mixed blessing.
   Tonight (3/17) Rebekah is feeling more like herself, laughing and getting her big brother Joe in trouble. Most of her hair has fallen out and Joe was telling her that it could come back a different color she was a bit freaked out about that and I let her know that if did and she didn't like it I would let Aunt Summer dye it any color that she wanted. She calmed down and asked for the night feed to start through her tubey.

Home

We got to bring Rebekah home late yesterday afternoon. I had been overwhelmed by the idea of how much care will be involved with keeping her well and plumping her back up between the chemo cycles.  She was in good spirits and was enjoying having her brothers around her. I was trying to see if she really needed her zoferan and it seems she does, so she tummy wasn't feeling that great today. I gave that to her and she dozed off, she is napping as I am typing. I woke up with a sore throat and have been using a mask and washing my hands a ton. I am not sure if I am sick, but I can't take the chance with my sweet angel. I am hoping when she wakes that she will feel more like walking and eating. My least favorite thing about having her home is having to give her her shots, I had to have a talk with her today about how we do it and then it's over and we don't need to worry or freak out or cry about it as that will only make us feel bad for longer. I have decided not to let the boys be in the room when I do it because when she looks at their sad faces she cries and their pity afterword isn't helpful for moving forward with the day. Rebekah is moving around a lot more then she was at the hospital even trying to get up and get food by herself (this doesn't really go well but I admire her efforts.) I haven't mentioned; one of the chemo drugs she has to take and the one she will get the most often causes foot drop. She had already been having a hard time because she walked exclusively on her tip toes for over a month so between that and the surgery and tubes and wires keeping her in bed for a week, she's pretty weak and is having to learn balance all over. She has adjusted to having the catheter better then the last time. When they put it in on Friday night the nurse said she didn't feel resistance at the bladder like when it was placed the first time. I am hopeful that this means that the tumor is getting smaller or more gelatinous as the doctor I met last weekend told that they do before the body starts removing the dead cells, he went into some interesting details  that put Rebekah to sleep. (That was a doctor who mostly focus on research and only does some clinical days in the hospital.) Anyway;  We are optimistic that the tumor will shrink rapidly and we can get that thing out  so she can start feeling a bit more normal. Oh and we are also hoping that when the tumor shrinks Rebekah will regain her ability to feel and control her bowels.