Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, July 25, 2012

The Lows

Emily today on the couch watching a video on her ipad, tired.
The past two days, Emily has been in her lows. She doesn't have a lot of energy at all and really hasn't done a lot of moving from the couch except for going to the bathroom. Tonight I did get her off the couch and into the tub, hoping that it would make her feel a little bit better. She doesn't really want to be messed with by her sisters and just wants to be left alone, except to rub my arm or daddy.  Her eating has definitely decreased, enough to which has really concerned us. We are continuing to try and work with her and using the megace in hopes that we can just get her to eat.  She is eating a few things, but not a lot.  We obviously know the culprit and what is causing her not eat, however we are just continuing to hope that we can work around that.  We are on the last 2 rounds of this trial, and like Dr Sholler said it would be beneficial if she can handle the dosage that she needs. So we are trying.  What we don't want to happen is Emily has to go inpatient and be placed on TPN and lipids and we know she doesn't want to either. Plus the TPN will only set us back, so baby girl we really need you to eat.  I know she is trying really hard for us, and to us that means the world.

Tomorrow she has clinic, to have her counts checked and see where things are.  I am sure she will need platelets, not sure about blood, but it is a possibility that she may need that as well.  Its probably going to be a long day in the clinic.  We are going to imagine that she is probably at zero for WBC, which means can't calculate ANC.  So we continue to hope for no fevers.

This is going to be short tonight, I am tired and ready for bed, but really just wanted to update and let you know where things were for Emily.  Send your love and thoughts..


  1. Strength will come to you Emily. I have every faith that you will win this battle. Your life is inspiring and myself and my family think about you, pray for you and send positive thoughts your way everyday.

    Strength and faith to you and your family. You are truly amazing.

  2. Poor girl! Hoping and praying things turn around really soon.

    Praying and praying,

  3. Sending love and prayers, sweet Emily! Hope you are able to eat more soon. When you are tired I hold you up in spirit asking God to help you feel better. And always praying for healing. I will NEGU hope for you. Sweet dreams and hugs!

  4. It is the 'lows' that make reaching the 'highs' that much sweeter and I have faith and believe that this will turn around for Emily so she can stay on the dosage for her last two rounds of the trial which is so important. It WILL happen and we WILL have victory! You all are in my prayers.

  5. I hate to hear that she's not feeling well. Prayers, as always.

  6. We are praying for Emily to come out of the "lows". Hang in there Emily, you are such a strong angel and God will get you through this. We love you and are constantly praying and thinking about you. Love Alex and Family