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Saturday, July 30, 2011

Day +4

Someone wrote in the guestbook, it is hard to have the positive (+) day (as in today is Day +4) and things not really be positive.  Today has been a hard day on Emily as well as dad and I.

This morning my supervisor Myles came by to visit, which was really awesome that he came by to check on Emily and I.  I thought I would have been able to go by and work a few days, but Emily has a hard enough time with me even just going downstairs to eat without crying and wanting me to be here.  Myles told Emily's nurse that I work for him and he was visiting since he had a CT scan, and then nurse looked at Myles and said, "Sorry, Shannon won't be at work today!"  Myles thank you for stopping by, it really meant a lot that you stopped by to see us. 

Its been a long day though, from the moment this morning when Emily woke up, she was in pain.  Emily has only been out of the bed today to go to the bathroom or to take 4 baths because she said that the warm water helps her tummy.  Doug and I talked to the doctor about the morphine and she explained it is a very small amount and that we could give it to her when we wanted and it would not be on a schedule.  We were both ok with this and would ask the nurse when we wanted it.  Emily threw up prior to Doug bringing Brianna and she threw up a lot of blood and after the nurse talked to the doctor, the doctor said Emily needed 2 units of platelets and a possibility of nexium to control the acid reflux. They gave her benadryl again to control the rash breakout if it were to happen again. Doug brought Brianna for dinner and when I left Emily she was laying on her side, when I got back she was still on her side.  She had a fever of 102.1.  Got her in the tub for the 4th time today and tried to get it down.  Dad brough a medicine binky which I was able to use and put tylenol in.  Before Emily got into the tub, she was crying out in pain.  Crying isn't the word, she was screaming saying it hurts, help me, it hurts. The nurse was in here and she looked at me and I knew she what she was thinking and I said, go ahead. I cried while Emily was in the tub.  The nurse patted me on the back, but I cried on several levels of seeing her in pain asking for help, "Help me!"  Our 4 year old was saying "Help me!" I mean really cancer, WTF, why do you have to mess with children?  Seriously, I hate you!  I hate cancer and I hate that these kids have to go through hell, hell of chemo and this horrible stuff with the hopes of getting better.  Emily is one hell of a fighter and we know she will get better, but in reality, this sucks, this really sucks.  I know we were told to expect this, I know we were told that this was going to be the worst week, I know this, but seeing it in reality is even harder. She screamed help me and that just tore me up.

Its almost 3AM and the fever is still here, they have added another antibiotic into the regiment of medications that she is taking.  They wanted to give her vancamycin, but because of the redmans that she got twice the last time, they decided to give her daptomycin.  She is also on seraphim, (which is a broad spectrum antibiotic) but because she has a fever, they need to add in something else to cover just in case she has an infection.   We have put ice packs on her, just trying to stable the fever or more really trying to get it to come down.   After the round of morphine wore off, which they give doses every 2 hours if she were on a schedule, it was about 3 hours later and she woke up screaming again saying it hurt.  

They still haven't given her nexium, so I will be talking to the doctor tomorrow because we think it will help her tummy!  But with all the medications that she is on they had to add another IV pump.  Yea, another IV pump.  But many of the medications are not compatible to be mixed with the TPN, so that was part of the other reason.  

Tonight has been a little difficult seeing Emily in pain, missing Doug and the girls and just overall hating cancer and seeing what it does to others and our daughter.  I can't stand that she has to go through this, and hearing her in pain, is unbearable.

Well Emily is still quite warm, so I am going to add in some cool rags to see about getting the temp down.  



  1. Hugs, big hugs. Sounds like you really need some! You are one strong Mama, hang in there!

  2. I am so, so sorry. We are praying

  3. Shannon, I am so, so sorry. I pray the pain goes away soon for you and that precious little girl of yours. My heart breaks for you. I HATE CANCER TOO!!!

  4. Matthew VandermastJuly 30, 2011 11:11 PM

    Hearing a child you love crying for your help in terrible pain, and not being able to stop that pain immediately, is one of the most awful things I can imagine. Not being a parent myself, I'm not sure I can imagine how much worse it must be when it's your child. My heart goes out to you, and to Emily, of course. What an awful day, and what an awful disease cancer is.

    Praying for you all, and hoping for days ahead that will make the hellishness of today (and days like them) worthwhile.

  5. Oh, poor baby girl. I know that feeling you mentioned, when they are in pain and screaming out and looking at you to do something to take it away. It's a helpless feeling and it sucks. It's temporary. She WILL improve and things will get better for her and for you. It's been a few days since your post, so I am hoping and praying that things have gotten better. I will say a big prayer for little Emily, and for you. Here is something I got in the mail yesterday that I really found comfort in:
    Trust in His Timing
    Rely on His Promises
    Wait for His Answers
    Believe in His Miracles
    Rejoice in His Goodness
    Relax in His Presence

    Sending lots of love and prayers your way.
    Misty and Madi Beckwith