Getting smacked with reality

             Had a full day planed with casting early in the morning, chemo and then an ultrasound later in the afternoon. Rebekah did very well with her casting even though I was thinking this guys is so big and he looks like he is trying to wrench her foot off half of the time we were there. I though I had left a little wiggle room in our schedule but there wasn't really any so as soon as her casts were on I placed her emla cream on and boogied on up to outpatient chemo. (With a quick stop at Arby's as requested by Rebekah.) We got to clinic with a few minutes to spare and waited to be checked in and be placed in a room. Or favorite Fellow comes in and talks to us we go over the normal: how's she been feeling did the casting go ok, do you feel comfortable with the physical therapist, when are they planning the next casting, we have Rebekah scheduled to come in next Thursday for inpatient chemo, stuff. Then he asks, "Have we gone over the big plan with you recently?" How long ago is recently? So I say, "umm." He pulls out her protocol and he explains that the eval week will happen at the time she is checked in for the new type of chemo she should be starting in 7 weeks and I said won't we be evaluating for surgery and when would they do it if we are jumping right into chemo? And Dr. I can't lie and I wear my feelings on my face says I don't think that it will happen at that point. This whole time I have been thinking that we would eventually get to a point where her tumor was going to be small enough or become less involved with things in her pelvis so that it could be removed, or at least I felt like that hope was there but his face said he didn't think it was going to be likely. I tried not to cry lest I make Rebekah upset and make doctor cry too, we both did tear up some though. I can't believe how I just move through some days so optimistic about how things are going and then get smacked by the reality that we really are fighting for her life, the quantity as well as quality.

Delays and a stent removal

     Radiation went well, this thought stays in my mind, Rebekah was able to hold still without being sedated, but her next round of chemo was delayed due first to low counts then to the return of shingles.  Once we were able to go in for her 5 day round of Iphosphomide and Etopiside she did well and was only sick a couple of times.
    While she was in she got another UTI, I asked her Hem/Onc if he would talk to her urologist about removing her stent. He did and Dr. Oottamatasthien agreed to remove it which he did on the Tuesday (10/8) after her chemo finished. He is so skilled and gentle, he told me that she might have blood in her urine for a few weeks making it cherry kool-aid colored but she hasn't and only the first 2 times she peed did she have any pain. He was a little nervous about removing the stent before he did it but in talking with him after he seemed pleased with how much less the ureter was kinked by the tumor.   The stent has been out for just over a week now and Rebekah hasn't complained of pain as she is peeing the way she was with the stent in place (happy dance).  Oh and a note to self : using gas to get her under makes her puke a bunch after so no more gas for that.
   Rebekah should have started another round of chemo this Monday but her counts remained low despite using neupoen shots to help boost her bone marrow's activity. Because her platelets fell to 12,000 (most people walk around with about 100,000) she was bruising easily and at risk for more severe bleeding so she had to get a transfusion of platelets as well as blood on Monday instead of her chemo. Delays add up and seem to increase the risk of relapse so we don't like them.
   Just got the news: Rebekah's counts are up and she will be able to have chemo tomorrow after she has an echo-cardiogram. (typing was hard because that is a reminder that her chemo can cause major life long heart problems. Rebekah hasn't had any changes yet but we have friends who's children have had serious complications and been unable to finish the protocol because of them.)

What is Aquaphor's big brother's name?.... Aqua-Five

Rebekah is done with the radiation part of her protocol.  She had 28 days where she would have to go and lay on a table in a mold half naked in a large room all by her self, it was only for a few minutes and she was being watched by cameras and the techs could talk to her but when your 4 ... oh heck, I would be more then a little nervous in that situation. She did very well and stayed still so that she didn't have to be sedated like most of the kids who get radiation at her age. (she was only 1 of maybe 2 her age who had done it with out sedation and she was the only one who did it for all 28 visits). Yes, I can brag about that and I will. Her skin did get chard and it did split some and peeled a lot and we put a total of a pound and a half of Aquaphor over that period of time; which is when Rebekah came up with the joke that is the title of this post. She did need to be switched to a prescription ointment during the last week or so of treatment and we kept using that until her skin was healed up. Rebekah would go to chemo at least once a week right after radiation but on  2 of the weeks she went for 5 days. Good thing it was only a couple minutes away. Rebekah had shingles during the first week of radiation and a kidney infection during the 4th and ended up having to stay over night at the hospital near radiation. She was taken by van so she wouldn't miss her appointments on the days she had to spend at the hospital. Shawn and I have been continuing to ask the doctors to remove the stent she has in her left ureter as it puts her at risk of a kidney infection at anytime, but they are reluctant to do it.  On the last day I cried, weird I know, I will miss the techs I trusted with my daughter each morning. Chrissy, Meg, Adam and Ryan were so sweet with her they really were a huge part of why she was able to keep still. Dr. Poppe was so good about taking time to explain everything to me and showed me exactly where the radiation would be hitting and how much she was going to get and we talked about all the late effects we should be watching for as Rebekah grows. I am so grateful for the good care Rebekah got at Huntsman.

reflecting

8/31/2013
Today is a bittersweet day, Rebekah feels pretty good and as I sit and listen to all the kids playing together I think "this is almost normal." Today I wish I could go back in time; to a time when, to my knowledge, kids didn't get cancer, and when they did they would get a bald head and do some chemo and be done and grow up healthy and normal. To a time when if some one typed dipg it meant their kid was sitting on their lap "helping" Mommy or Daddy type, not that a family or a new friend would lose their child. To a time when I hadn't had to talk to my 4 year old child about going back to live with Heavenly Father being ok because little children do not have sins so they get to go straight back to live with him. When kids parents didn't have to choose to removing a part of them as "the best option". To a time when I would have been planting with my daughter instead of telling her, "no you can't play in the dirt." When she had no clue what neutropenic meant. When she didn't ask for zofran  or ben- phen. When I could sleep through the night without worrying that the next day might be a bad day or that she would spike a fever. To a time when I didn't have to worry that that fever could mean an infection that could kill my little girl. With an agony that wenches my soul I miss our old, before cancer life...
But would I go back to a time when it wouldn't put a huge smile on my face to hear, "Rebekah, we need you to take down that armed security guard. Can you do it?" Or when I didn't have the appreciation I now have for a husband and father who would wake up in the middle of the night to give meds so I can have a few solid hours of sleep because he wants me to be able to drive safely the next morning and so that his daughter won't have to list throw up as the first thing she does in the morning. Or a time when I wasn't as grateful for a warm meal cooked by someone else, or a smile from someone I know is having a harder time then me wouldn't give me the strength to get through another day with a little less complaining. No, I can't go back and I don't want to. Was life easier; did I have less joy; less sadness; less strength; less gratitude?... Maybe, I don't know, I can't compare where I was a year ago with where I am now, life is just different. Can a grieve the loss of my ignorance of the world of childhood cancer and still rejoice in what I have found in it? I believe so.

Randomish thinking

I have been writing thinks down here and there but I haven't published them because I haven't been able to complete my thoughts or at least turn them into something cohesive enough to feel like someone might want to take the time to read them and I also started posting shorter things on Rebekah's Fight (the page I set up on Facebook for her) so laziness has played a part as well. so I am just going to post all of the snippets together and hope for the best.  Here goes:

    Today ( 7/8/2013) on the way up to chemo I started thinking about the most likely way Rebekah will be able to have children and it struck me that all of the mothers of my future grandchildren are probably alive (with the exception of the mother/s of Rebekah's). I started hoping that they are being well taken care of and are in homes with parents who love each other so they will have a good example of how being married should be. I also thought about with Rebekah likely not having her own children that the mother / mothers of hers might be not born yet, I thought about how thankful I will be to her/ them and her/ their parents for coming to the decision to help someone else become parents.

     As a parent of a child with cancer I have to be concerned not only with will she live through this but how will her life be after. Some of the effects of chemo are immediate, and very visible and some we just won't know until she is older. The throwing up and hair falling out, inability to keep weight on, mouth sores they show up right away but they will be reversed if she makes it through. The heart defects, pelvic deformity, lung scaring, infertility, chances of other cancers, these and some others won't show up right away but she will have to deal with them the rest of her life.

     I was asked by a friend who's child also has cancer, how I cope with the fact that there is even a chance that my daughter won't live through this. I told her that the only way I get through that is by focusing on the future, not the "oh one day she will be cancer free and life will go back to normal future" because as far as I can see that's just BS, I can see her life being good and having joy and happiness but it will never be the same as if she had never had cancer. She is going to have scars, I will always be scared that it will come back or that she will get another kind of cancer even on the most awesome and fun days I can imagine I will have that at the back of mind and with every time she has a pain in her I will think "is the cancer back". Our lives have been forever altered and she is only 4.


     I am scared about Rebekah's upcoming MRI; I am scared the tumor hasn't shrunk and they won't be able to take it out; I am scared that it has shrunk and they will want to remove it but will damage organs when they do; I am scared it will have shrunk so much that she won't have to have it taken out at all but that later on this will have been the wrong call and she will relapse. I am scared that she won't wake up after the surgery; I am scared that they best option is to remove organs or parts of them during the surgery. I worry they won't get it all. I worry that she won't recover well from the surgery and it will delay her radiation; I worry that they won't give her time to recover.

My boys have always behaved badly when I need them the most, moms I know you know what I mean. You tell them you need them to help out because you are sick they make more messes and make you yell at them to do simple things and it ends up just wearing you out more. with the stress and worry I have been experiencing I just can't cope as well with the day to day behavior and my kids being home for the summer is just draining. I love them and I wish I had more to give them I wish I could smile and take them to do the fun things they want to do and do all the things they want me to do.

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

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.
   

3/7/2013

Today was a day of learning and fear. I gave my first sub q injection. I let my daughter know that when we come home I will be the one giving her all her meds. She didn't want me involved with them at all but once I told her that was how it was going to be she was ok with it. I learned how scary a fever can be and to be careful not to mask one. I also learned that if I feel weird or am in doubt I should just call, there is no room for "wait and see" at times because that is when these kids pass away. I also learned that we have to let her be as normal as we can without exposing her to a bunch of germs, can you say balance, I was assured I would get to a point where I was good at that.  We've also had a lot of bouncing around lately about who was going to make the final call as to when the foley would be coming out and if we were going to have to put a new foley back in or strait cath her at home every 4 hours. After days of talk the doctors decided to let us decide, how nice of them. So we are going to have them take her foley out and give her a few hours to see if she can pee on her own, even if it just dribbles out into the bed or a diaper. (this will make me the happiest) Or if she can't pass any pee at all :( then we can pick either the foley again which we know for sure she hates or the strait cath every 4 hours which we think she will also hate. At any rate I am wondering how the heck my parents ever came to the conclusion it would be ok to bring my sister home. I don't feel up to the challenge of keeping the house super clean and taking care of her needs as well as making sure everyone else is taken care of.
Good night all

So Tired

  I felt fine leaving the hospital today....
  It has been a long day, Rebekah has been very sleepy and this morning was no exception she was mean to people who she normally loves to see and was hushing people left, right and center, trying to go back to sleep. We reaccessed Rebekah's port after 1pm and while it was out we (I was in my swimsuit) took a bit of a shower. Rebekah has been rashy and it was on her head, chest and back, we had washed her hair with no rinse shampoo so I was thinking she maybe sensitive to it and rinsing it all off of her might help (I later found out that the chemo can come out in their sweat too. Extra reason to take a shower) I held her on my lap in a shower chair leaning back so as not to put pressure on her catheter. We got her all clean and she seemed to really enjoy having the water running over her belly and back. We had just got her back in bed when we had visitors. I was hoping for a few minutes for Rebekah to get to know these people that Mommy and Daddy love but, she puked. We headed back to the shower to get it out of her hair lest she smell until we could get her to agree to go back in. The saddest part was that she had just tossed up the french fry that she had eaten and all the shake I was able to get her to sip that day. That was everything she had eaten since the chocolate covered strawberry she ate between chemo doses the night before (yes, I know she's not supposed to eat during that time but she wanted to and with her not wanting anything the whole day before that, I couldn't say no.)  { Getting our sweet little girl to eat has been a huge source frustration for both my husband and myself and anything that she agrees to eat feels like a major victory. It was mentioned at rounds this morning and I felt a bit of shame but Dr. Luke gave me a reassuring nod and stepped closer to me, I think to indicate that it was ok and he was on my side.}
  We got her to clean her mouth out before she nodded off again. I rushed off to go be with my boys and feed them. I got about 30 minutes away from the hospital and I started getting so tired, I had all these plans for when I got home. Cooking a good dinner, making banana bread, washing some clothes, washing myself, helping the boys feel loved and cleaning the dishes. I sit here with the dinner done, it was good (chicken and asparagus) I bought some bananas, I have some clothes sitting in the washer waiting for me to move them to the dryer, I think the boys now know how many curse words I know (insert shameful downcast look), some dishes are in the dishwasher, I will carve out 15 mins after I post this to take care of the other one. I need to work on finishing the list. I get a new day tomorrow to do better at the loving of my boys and to remember that the other crap can wait. I am a work in progress, not a perfect person. I have bad days and get to do better tomorrow. I know I am loved even when I'm not at my best. I guess I had a glimpse of how Rebekah was feeling, I can be more patient with her.
Lots of love to you all,
Goodnight

3/2- 3/3 My turn in the hospital

I learned some coolish things on this turn with Rebekah.
1. there is no limit to the amount of pain meds that a doctor can prescribe to a cancer patient and
2. Some nurses just don't get that when one pain med is ordered to be given every on schedule every 3 hours and a patient is changed to a new med that it too should be scheduled as well.
My daughter; those of you who have known her for more then the last month know she is super sweet and kind, was acting like someone else when I arrived requiring her leg to be rubbed just so and yelling at people. I was very worried, I had had the morphine scheduled so that she would be comfortable but not groggy I thought "oh my gosh it's not working anymore what are we going to do they said they would go up to every 3 but would they up the dose and increase the chance of side effects" then I thought "is this new guy pocketing my little girls meds?" I asked Shawn about her pain control and he told me that she had been switched to Oxycontin which should last longer. Seeing what I thought meant it was not working I asked when she was going to be getting it next. The nurse told me that she was ok to have it now, (pause for those who know what I might have been thinking) I used great restraint in not yelling at the nurse or hitting him and asked how long ago she could have had the medicine, to which he replied "oh a half hour, 45 minutes; do you want me to give it to her now?" (angry pause again)
"yes"
He gives it to her. Shawn leaves after kissing and hugging both of his girls goodbye, our hearts break a little bit, but we know he has to be with the boys. After 30 minutes or so Rebekah has returned to her sweet self and is nice to the nurse, I say "Meet Rebekah that's the little girl I know" it seems like not too long after things start to go down hill. We call in the nurse to see what time she can have her pain meds and again he says she could have had them a little while ago. GAAAHHH...... I think he can tell I am frustrated and he goes into how some parents push too much for the pain meds and they can suppress the nervous system too much and keep the kid practically sedated ect. It's close to shift change so I let that happen then tell the resident on that night when she comes in that I want her meds to be scheduled because I want her out of pain and able to talk to us and not be in pain waiting for us to get a clue and ask. She wholeheartedly agreed with me and we walked out to find out how much time was going by between doses earlier as were out in front of Bek's room I saw Dr Sato there adn she over heard us talking and she said "there is no limit to the amount of pain medicine we can give her, we want her to stay comfortable. It's not good for her to be in pain, can slow recovery" I am utterly relived to know that the doctors are on my side even if a nurse or two might not be. (it was always the ones who hadn't worked on ICS for as long that wanted us to ask for the meds after that had been scheduled out.) I hope Rebekah has a good nurse tonight that gives the meds on time or Shawn will be in for a long night again.

waiting for poop

3/2
Rebekah is going to be taking 8 types of chemo drugs at different times and in different combinations throughout the next year with a few short breaks here and there. Tonight is her second night of chemo. Yes, they started her the same night that we sat down and got our official diagnosis. Last night I was home with the boys and Shawn got to be here for the best side effect ever..... diarrhea.  Now; Rebekah's last poop was on Monday after the last enema I was told to give her for her constipation (insert sarcastic laugh here). Shawn told me just as I was getting ready to come up that she had " explosive" diarrhea last night and that in addition to that the poo can't be left on her skin long because it contains some of the chemo drugs and could do damage to her skin. So I am gearing up for some serious crap works and having to change my big girls diapers. oh and he told me that it was really smelly. They gave her the first type of chemo she gets, Temozolomide, she gets to have it mixed with some apple juice (she has told us it tastes horrible, but she still takes it). a few minutes later she rips one and there is a smell I have never before in my life conceived would erupt from someone I get birth to. I,  a woman who prides herself for not having a gag reflex, kind of gagged a little. I told the nurse I was worried she had soiled herself and proceeded to check to the objection of my daughter, who told me she had not pooped. She hadn't yet. Then the nurse informed me that it was the next chemo that she was getting ready to give ( she has to cover herself and wear special gloves, and mask just to put the stuff into my little girls veins) the VinCRIStine and Irinotecan that cause the diarrhea. So in my mind I just thought "I am so going to hurl if it smells like this fart just did". I get on my purple gloves and get ready for the avalanche of foul smelling excrement. The nurse starts giving her the chemo first the V one then the Irin one and leaves since it takes an hour and 15 mins to transfuse. She comes back and I still have my gloves on waiting..... and then it happens...."Mom, I need you to change me, but don't wipe on my caf ader." The nurse is running something through Rebekah's port to rinse it out and I am the only one who can bravely step up to the plate and clean up my little boo's horribly foul poop. (I am hoping to prove to be as manly as my husband was last night, he cleaned up everyone of her poops with some help from the nurse). So I do my power pose (those who have been to time out for women know what I mean) gearing up to clean her and proceed it's not as bad as I thought it would be, I can do this, Rebekah was displeased with my having to clean near ad around her catheter but it got done and she was all clean. The nurse takes her vitals and then leaves Rebekah falls asleep and so do I. I wake in the middle of the night thinking that I missed a poo and her skin would be a mess, the nurse ( who requested to be with Rebekah again tonight after being with her last night) tells me she did change her one time but that was it and that she had started her on the anti-diarrhea meds earlier in the day....things that are good to know before you freak out.

No, I wasn't crying, the water in our apartment just sounds like a woman whaling.

I had to have an ugly cry tonight, err this morning. My 4 year old daughter has cancer. There, I said it, ok I typed it. It has been a lot easier to type then to say in the last 4 days, it's Saturday at 4 am and Friday night I got to come home for the first time since we rushed our daughter to the hospital on Tuesday. My heart feels like it might break for the pain my little girl has been experiencing and will have to endure over the next year. She has Rhabdomyosarcoma, she has to go through a year of treatments including 8 types of chemo and radiation for 5 weeks, because of the chemo she will loose her hair, the hair we have told her over and over is so beautiful and that women pay lots of money to have. It has natural highlights and honey low-lights it's very straight and she knows mommy spends time straightening her curly hair. I just don't know how to talk to her about the hair loss. My husband thinks I am morbid when I talk of braiding it then cutting the braid off for a scrap book. She has a cousin who has a bob and it's so cute I am hoping I can talk her into letting us cut it short before it starts to fall out.

PS the shower at the hospital has that same whaling woman sound too.

My world shattered.

After battling with some serious crankiness, leg pains and constipation for nearly a month my husband on Tuesday 2/26 got ready for work but instead took my daughter to get another opinion about her bowel troubles. I arrived at the doctors office shortly after dropping our older children off at school. The doctor came in asked about her back story and what we had done over the last month. We told him about her crankiness, the ultrasound we had done on the 20th, the enemas his colleague had us give her to move what was thought to be very full bowels, the miralax,  the fact that she had started toe walking all the time, her lack of appetite, the flat shape of her non runny poop, the size difference I was seeing in her legs, her complaints of leg pains that started off and on at about 3 and a half, just like 2 of her brothers, but that had become more then just a night time thing. He asked us to remove her pants and looked at her legs saw that her left leg looked swollen, felt her tummy and felt the thing I had been rubbing on for days trying to get her to pass it thinking it was a partial obstruction. He told us things weren't adding up and wanted to do some more tests, he left the room and called primary children's hospital about doing an MRI. They talked him down to an ultrasound at their facility that was closer to us in Riverton. We were sent home with a piece of paper and a time hopeful that this time we might get some real answers.  As the time neared we tried to get Rebekah to drink the 16oz that they wanted her to have but didn't feel too bad when she refused because she hadn't really peed anyway. We arrived on time and waited as is usual when it was our turn we went back and talked lightly with the tech about what was going on she put the warm gel on Rebekah's small belly she fairly quickly scanned her tummy and moved to her kidneys I could see some pockets of fluid in her left kidney and it looked bigger then when they did the ultrasound the week before I let the tech know and she said it did look a bit swollen to her too. The tech left to get the radiologist and came back with him pretty quickly he looked things over and told us that things didn't look right, that what the ultrasound tech from the week before had said looked like full bowels was wrong and what we were seeing wasn't bowel at all. He left us for a few minutes to talk to the doctor that had sent us and got him on the line in the room for us. Feeling like letting Shawn take the lead on this whole thing I had him do the talking to the doctor and the radiologist explained to me that they wanted to do a CT scan with contrast and that they would need to put in an IV to do it. The tech brought in some crayons and a coloring book I called my mother in law to see if she could head to our apartment to be with the boys because we didn't know how long we would be. A nurse and the tech took us to put the IV in, Rebekah was not too keen on being poked but suffered through bravely. We moved to another room with the huge CT machine donned our lead aprons and  tried our best to help our sweet little girl to hold still and let the "big camera" take her pictures. The tech told us to hang out in the room with her in place on the machine while the radiologist looked at the pics to be sure we got a clear image and could see what he wanted to see. The tech came back into the room and we started collecting our things thinking he had good clear pics and someone else would have to call and tell us what he had seen as is the case with most of these kinds of tests, but she told us to go into the viewing room with the radiologist so he could talk to us and that she would hang out with Rebekah. My heart was in my throat I had just said to Shawn as we were waiting that he was making bad faces and here we are going to speak with him without our child.  He showed us the pictures and pointed to the edges of what he said was a large mass, it covered the whole area I was expecting to see intestines it's shape was odd and had a part that jutted out right above her left hip. I was shocked at just how big it was. They told us she would need more tests to know what exactly it was but that it was a tumor. They had us go sit out in the waiting room so Rebekah could play some, I was bawling, while they called the doctor about scheduling the MRI. We left after being told we would get a call about when to come up to Primary Children's in the morning for a sedated MRI and that she could have nothing to eat or drink after midnight. When we got home we told Shawn's mother what was going on I called my dad and let him know they had found a tumor ( I couldn't say the "c word"). I sent texts to a couple friends who had been helping me cope with the "constipation"  and called my Relief  Society president and left her a message that I would like to be released because I wasn't sure I would be able to do my calling as a teacher. Shawn went to gas up the car and grab us all some dinner, Arby's, one of Rebekah's favorites. As we were eating we got a call from Rebekah's doctor and he tells us that the CT scan showed a big blood clot in the large vein going from the leg into the heart and that we need to pack a few things and come into Primaries tonight and go straight up to the 4th floor some unit called ICS and that we would be met by a Dr. Sato, so we could bypass the ER. We call Shawn's sister back to stay with our kids, toss some stuff in a bag and leave the other children to head up to a hospital neither of us knows how to get to (thank goodness for smart phones). Shawn dropped us off at the main entrance and went to park the car. Rebekah and I head in and ask the guard sitting at the desk where ICS is, she stands quickly and points to the elevator and says 4th floor head left after you get off push the button to open the doors and pick up the phone in the room but asks nothing of us in fact she seems to be thinking we should be hurrying faster then we are. As we come into the little man trap as Shawn calls it someone is leaving so we just walk in, there is a cute little pregnant nurse sitting behind a counter and I say, "we were told to met Dr Sato." She looks at us and says, "this must be Rebekah let me take you to your room." It was about 7pm and our nurse Eric got us settled in, took her vitals put her ID bracelet that was already made on, and let us know that he was only there for us, I have never heard of a nurse having just one patient before. Dr. Sato came in an introduced herself, let us know she and a group of other doctors had been looking at her CT scan and ultrasounds and that the clot looked old and would not likely cause a problem but that we would stay overnight and the MRI would be the next day. After she left other members of Rebekah's Team came and talked to us about things each of their specialties would bring to her diagnosis and immediate treatment. A pediatric surgeon came and talked about the options for biopsy and said she would be doing one or the other based on what she was feeling when she got in there. A Urologist came and talked about what his colleague Dr. Si ( sounds like sigh)  would likely do to address the kidney swelling ,a sent being the best option but not knowing if it would be able to be placed at all. And Luke, her Oncologist, came to talk about what the biopsy might reveal. Some of these doctors came in several times and one of them wrote up an order for morphine, we didn't know till she had been in pain for a long while, we were waiting for the time to give ibuprofen again and Eric mentioned  that she could have the morphine in the interim. It feels weird to say yes, please give her the morphine after only giving her ibuprofen at home and sending her back to bed when she would get up in the night complaining of leg pain. Once she got he morphine she actually slept without squirming around and making fussy sounds for the first time in weeks. But that only last for a little while. She really need to go pee but couldn't get it out so at 4am we had the nurse place a catheter, which was very difficult for everyone in the room. but once it was in it drained quite a bit of fluid before it just stopped draining and Rebekah became so uncomfortable Shawn dashed out and brought back a nurse to take it out. It was decided by about 7:30 that Rebekah wouldn't be having the MRI but instead would have a biopsy, port placement, bone marrow aspiration, scopeing of the bladder and vagina, and hopefully placement of a stent and a larger catheter all done as one surgery so she wouldn't have to be sedated more then once that day, (they have a rule about that). One of the urologists came and talked to us about what would happen if they couldn't place the stent it involved placing a tube through her back directly into the kidney (so glad that didn't have to happen).  We were scheduled for around noon to start the surgery, everything went at least as well as expected even if it did take longer then we thought it might Dr. Si pulled off something of a miracle that was the talk of the hospital for days with the way he placed her stent, he even seemed pretty pleased with himself when he came out to tell us.  My baby had had her first IV, her second IV and her first very major surgery all in 24 hours.