Back to "normal"?!

I have been changed by the last 16 months in ways that can't be reversed. I never felt like I fit in before, and now even less. My soul aches for the friends who have lost children as well as for my own struggles. I don't know how to just pick my life back up and live like we used to, but that seems to be what people expect. My heart still feels broken for the things I have missed with my other children over the last year and the fun things Rebekah missed out on. I am still in awe that Rebekah made it through all she has been through and how close she really was to dieing. I kind of get pissed off when people think "oh she finished chemo so she's done with the cancer," if they were actually any good at curing metastatic rhabdo then yeah maybe that would be true. 20-30% of kids live 5 years after diagnosis with metastatic rhabdo so when Rebekah hits 9  1/2 we can say she has "survived" but there are no statistics after that. Nothing I have read leads me to the belief that it won't come back. I have to pick myself up everyday slap on a smile and act like life is worth something because it is and I want my kids to believe so too. The oldest is having trouble adjusting to me being here and in charge most days we struggle for power and it hurts that I find him to be so annoying and headstrong. The second oldest is becoming clingy and the youngest boy is more easily sent into a rage or tears. I don't know how to pick up the pieces and be the mom they deserve and fix these issues. 

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.