live a little, learn a little

Today (6/2/2013) was a long day. We checked into the hospital Thursday for chemo and she has been fevering off and on since. Today they started her on vancomycin because the first set of cultures they drew on Thursday grew a gram positive bacteria. At any rate while the doctors were in talking to me about the possibility that she might be having an interesting reaction to the chemo but that it was really nothing to worry about, the nurse was starting the vanco and Rebekah starts itching her head hard and her head turns red. The doctors say its a common reaction to vanco called "redman's". Some iv benadryl and that got mostly better the nurse told me they would run the vanco over a longer period of time so that she might not react as much. She had to get blood right after the benadryl and before she could start her days chemo. While they give her blood they have to keep checking on her and that also means blood pressure which she hates every 15 mins. Then we got to start chemo. Trying to get her mind off of her being itchy and miserable I let her climb into the rocking chair in the room she was playing and got her ball when it fell near the chair I helped her back into the chair and got yelled at for treating her "like a baby" so the next time she was climbing back in I offered to help and she told me she didn't need any, she slipped and fell pulling her port access out and letting some of her chemo leak into the subcutaneous layer of the skin around her port. The nurse was called in quickly and it was estimated that about 6 ml of chemo actually went into the skin. They removed her port access and let what fluid would, drain out of her skin. Then they called the pharmacist to find out what the protocol is for this type of chemo when it infiltrates.  Within minutes we knew what was to be done, starting with hot packs to help the chemo to move into the bloodstream and not damage the tissues near her port. She would not be able to be re accessed until the next morning so she would need an iv placed until that time so they could continue fluids and the antibiotics but her chemo can't be put through the smaller veins in the body because it would damage them, so that had to go on hold. about 15 mins after she fell the IV team was called. It takes a while for them to come up. and while we are waiting we had some visitors, it was so nice to have some thing to break up the eventful day that was happy. (Thank you Stephanie and Rebecca. I know you had no clue before you got there what it was going to be like in that room. it really was a blessing.)
   When the IV team comes in to place her IV they are kind of nervous because they have heard what a rough morning she was having. They offered to use the " rocket" on her so she won't feel the poke. I had never heard of this and it was explained to me as blasting the lidocaine in a microfine mist into the layer if skin. (whoa, a hyperspray. is what I thought ) what I said was "really, just like on Star Trek" could I have felt more like a dork, um no. Anyway it is a little like the hypersprays they use in Star Trek but it only penetrates the top layer of the skin so not too useful for most things we would think of not wanting a needle for.
Back to the story she got her IV placed and the IV team was so surprised at how well she did they sent her up 2 prizes. The nurse came in with them and some emla cream to place on her port area so that they could inject her with the 5 shots of stuff they call white-aise  ( kept thinking mayonnaise when I would think of the word so if I spelled that wrong I am sorry) right into where the chemo had leaked also to help the chemo to move into the blood vessels  and out of the skin. Rebekah had a hard time relaxing ( I can't imagine why) when the nurses came in to do the shots. They offered to have 5 come in and do them all at once but I didn't think Rebekah or I could handle that. Her nurse and the charge nurse ended up doing them 2 at a time then the last one, the stuff was kind of thick so even though it wasn't very much (.12ml) it took a few seconds to inject, but Rebekah held still and I held her arms down while she was on my lap in the bed, I had to get her to lay back on me for the last shot as it was up near her collarbone. She didn't do as well as I had hoped, for her (there was a fair bit of shouting) but she did far better then the nurses had expected her to do. I guess most kids kick and scream and fight and that's just not her, or any of my kids, we just explain what's going to happen and why and they comply (except when it comes to housework.) So the charge nurse asked Rebekah to come by her desk and pick a prize from the treasure box when she was ready (Rebekah was crying some, who wouldn't be) Rebekah was ready to go pick a prize within minutes, but we were still doing the hotpack and she didn't have a shirt or anything on so I had her wait a little longer. She picked out 2 things she wanted and Erika said she could have them both because she did so well :) A tube of lip gloss with sparkles and a Disney princess paddle ball. One of the other nurses on the pod that day (Dave) gave her a set of wings and some soft pom poms to shoot using the slingshot she got on Saturday from Heidi which Rebekah used to shoot the nurses and the doctors who came to see her. lets just say that we left on Tuesday with an extra bag full of stuff she got while we were there in addition to the normal stuff we take from the room like the pillows they would throw away when the room gets cleaned (they are great encase something gets spilled on them or they get puked on I don't feel bad just tossing them) because they could have traces of chemo on them from her sweat or tears or any other of her bodily fluids and if she did have a germ of some type they just can't risk another kid coming in contact. (if your thinking, "Wow, I wonder how much chemo Autumn and Shawn have been exposed to." We think about that too somedays)
Well, that few minutes of acting like she wasn't hooked up to something pumping poison into her wasn't really worth it and she and I have decided that the next time she is actively getting chemo she must remain in the bed. But when she's just on fluids in would be ok to get up and move about.

The ink marked the swelling which didn't get any worse.

                    

At home after this round, she got a new dress and so did Evelyn.

  

 What do you do on a Saturday night in the ICS? Go cruising of course.

May19, 2013 Back and forth, no more lovenox shots. Crazy life

     Rebekah has been feeling better with her treatment, she still doesn't eat much but she has a feeding tube and we are able to use that to get in most of her calories at night. She had a couple rounds of chemo that were just awful for her and she lost weight we are still working on putting that back on.  The nutritionist says she is pretty happy with the weight gains Rebekah has had and just wants us to keep up the good job we have been doing. This doesn't quite feel like enough but it's the best we can do. We are mostly trying to keep her chemo on track so that we can keep beating up that stupid tumor and I am praying it won't come back. I unfortunately read about some kids locally who were in treatment for ERMS and their tumors came back or got bigger during treatment, they didn't fall into the "ideal" age range as Rebekah does but their tumors were found before they got to stage 4. So I have been having days where I am less optimistic then Rebekah's doctors seem to be.  We are at the point in the "road map" (treatment schedule) where she has to have inpatient chemo every other week and it goes week 1;   3 days in  week 2;  1 day out patient week 3;  5 days in week 4; no chemo and repeated 3 times then we have another evaluation of her tumor. The reason they do these chemos inpatient is so they can give other drugs to help mitigate some of the side effects like bladder damage and heart damage. They give mesna and run a lot of fluids checking her every 2 hours to be sure she is peeing all night and they give her a medicine that is supposed to protect her heart but some doctors don't give it in other countries because they say there is no evidence that it works to do so. The extra fluids are supposed to also help with the damage that can be caused to her reproductive organs but that is anyone's guess as to whether that actually will help at all. Her ANC drops after each week of inpatient chemo and so to get her numbers back up quickly we have to give her daily shots of neupogen, these cause her to have pain in her bones because we are forcing them to make more white blood cells then they would otherwise.  I just keep think; why the heck is this really poisonous stuff with all these side effects her "best" option. 

     The week before this when her ANC dropped she got a fever; her hemoglobin dropped too and she needed a blood transfusion again. While we were they they assessed her blood clot and concluded that she could be taken off the lovenox injections. We did a happy dance and Rebekah cried tears of joy.

   This last week was week 1 in the second set of these chemo drugs. While we were there she got a urinary tract infection and was complaining of her back hurting, they gave her antibiotics to start kicking the UTI, ran a culture to see what to kill it with when she went home and did and ultrasound to make sure her stent was still in a good place and draining the kidney properly. The radiologist who came in was the same one who found the mass.... I began to cry when I saw him before I even knew it was him. That was one of the worst days of my life.  Also later that day Rebekah got casts of her lower legs done for splints she will need to wear at night to stretch her achilles tendons. Vincristine causes foot drop and Rebekah came into this with a shortened achilles from toe-walking so we are trying to keep it from getting worse and having her need surgery for that. (She still has a lot more Vincristine left in her treatment.)

This summer is going to be crazy with the inpatient chemo and the fevers from low ANC, which they treat as if it was an infection whether it is or not just because if it is these kids can die so fast. That means we have to stay while they grow a culture they collect from her port (24-48 hours).

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