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.