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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Monday, July 25, 2011

Day -1

This will be a quick update tonight, because last night I couldn't sleep well at all, worked a bit and tried to sleep again and sleep didn't come until about 5 AM, so I am beyond exhausted tonight.

This morning, Emily and I were woke up by my mom coming to visit Emily because Emily asked her last night by skype if she would come and she did.  They enjoyed a couple hours together of playing, looking at the weather (Emily's favorite thing to do here as of the past few months) and playing on the iPad.  Dad and Brianna came because we decided since her counts were 1.4 last night, Emily is well on her way of her counts tanking, so we let her see the girls.

Emily had a good day, and actually the lines were taken off (since they needed to be changed, which is done every 3 days) and Emily ran the halls with another little girl who was going home today, YEAH MIREYA. (I hope I spelled that right).  After that she took a nap.

Emily continued to have loose BMs today which she couldn't control and I would need to change her.  She was rather upset that there isn't a sit down tubby here and the nurse said since she is off that chemo she was on, it would be fine if we found something to put there so she could take a bath.  Hopefully we will be able to find a very small ring pool.

Jessica came to visit tonight, which allowed Doug, Brianna and I to leave for a bit and see if we could find a very small ring pool (which we couldn't, looked at 3 places) and to pick up Jessie to come visit Emily for a little since today would be the absolute last day. When we got back, Emily was very tired and was just laying with Jessica.  Thanks Jessica for coming out today!  It was nice to have all of the girls together tonight although it was only for a short time.  

Dr. Gowda didn't see it necessary to start TPN yet, although its been 2.5 days since Emily has eaten. He said we will just take it day by day. She did take a little (like smaller than baby bites) of some ice cream and her organic cupcake.  But nothing too big, at least she tried.  Dr. Gowda also hoped that Emily would remain like she is, we are hoping the same, but I am sure that now that her WBC is at .4 we are going to start to see other symptoms.  We are hoping not, but I am sure that we will.   Most likely mouth sores, but we are hopefully that the Glutamine and traumeel did its work. We did look in her mouth tonight and could see some whiteness on her gums, so it looks as if it maybe starting,m but again hopeful. Emily's hemoglobin was low again tonight, so she needed another transfusion.  (I have to tell you, I hate that she has to get these and I hate that they waste so much blood, because the pharmacy sends so much up and they don't use it all).

Tomorrow is the "Big Day" Emily will be rescued with her own stem cells.  From what I understand the process of receiving your own stem cells is much like receiving platelets and it is normally done in less than half an hour.  They do give her benadryl and tylenol before they do it, just because of the preservative that is in the stem cells that can sometimes cause a reaction.  We have to keep telling Emily that she isn't getting stem cells, because she doesn't want them (She freaks out), from what it seems like to her it is probably a big procedure, which it is just hung and goes through her IV.  

Please continue to hope and pray that the time here is pretty easy and the symptoms don't get worse.  

Emily's Wall of Cards
Thank you to all of you who have sent Emily a card and for keeping her in your thoughts and prayers, we are keeping a wall of all of her cards that she receives so that we can all be reminded of all the wonderful people all over the world that think of our Emily.  We told Emily she is a fan everywhere and everyone thinks about her. Thank you again everyone, it means a lot. 

Good Night, remember to hug and kiss your kids!  


  1. Stay strong! You are in my prayers!

  2. I saw 36 inch round blow up pools, but they were only 4 inches deep while I was out today. I will gladly pick one up for you and we can arrange a drop off- I live in the city. They were at Toys R Us if that is what you are looking for let me know. aprilkek at verizon dot net

  3. Still reading all of your updates and praying for all of you!!! Lots of hugs!!! I have been out of town and could not comment.

  4. I don't even know you but my cousin Vilate told me about Emily a while back and I've been following ever since. I just wanted you to know that you have a "fan" in Utah and we're thinking about your little girl! She seems to be doing great, all things considering. She's so brave! Tell her that she's almost as famous as Justin Bieber now :)