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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Sunday, February 13, 2011

Sunday, February 13, 2011

Emily is sleeping and Mommy is awake.  I can't sleep tonight. Its been a long few days, Emily is still wanting to be home pretty badly, but she is hanging in there.

Jessica and Emily (Jessica loves Emily so much
We got here Friday afternoon after the nurse called around 10AM to let me know that a room was ready!  My mom came over to the house to come with Emily and I to the hospital. When we got here, we had a really nice room, I have never seen any of the rooms like it before.  It had a beautiful painted picture on the wall and a sofa and it was beautiful.  Anyway.  The day started and Emily had to get her 2 hours of dehydration to make sure she was hydrated enough to start chemo. All those horrible feelings and wishing Emily didn't have to have any of this, and the thoughts of the first round came back.  I am scared because I'm just not sure how this round is going to affect her compared to the first.  Anyway,  IV fluids started about 2PM and everything was looking good her urine specific gravity was good and they checked her blood pressure and it was low around 4 PM.  They tried the other leg and arm, and still had very low readings.  She was sleeping, but it was lower than normal from when she was sleeping before.  So, the doctor recommended that she have more fluids before she started. They checked back quite a few times and she continued to have low blood pressure even once she was up.  They checked again about 8PM and she was ready, so chemo started at 810PM. Jessica came by Friday night to check on Emily and bring her a bunch of Justin Bieber goodies.  She was pretty excited and now the room is decorated in JB and she is wearing his necklace.  I keep saying and her sitter has been trying to reach someone who she can talk to about seeing that Emily can meet Justin Bieber and he sing her a song. Oh how she would love that.

Emily's I <3 JB Necklace from Jessica

Emily's Justin Bieber poster from Jessica.  He kept staring at Emily, Emily said.  It was so cute.
Emily and I were watching TV and the nurse came in, and said "mama we are going to have to move Emily to another room across the hall, because another family needs this room for pallative care!"  I had never heard of pallative care and was also making sure she wouldn't have to share a room. The nurse explained pallative is for a patient who is end of life and Emily wouldn't be sharing a room. Oh wow, was all I could think and it was just really hard to think that the room that we were in was used for children who are at end of life and that is why the room was done up more than any other room to make things more comfortable.

Emily and Uncle Austin.  He loves his Emily and is very protective of her.
This morning Emily's stomach was really bothering her and she wasn't feeling well. She said she couldn't eat because her stomach was upset and that she might throw up.  Emily had quite a few visitors today from both of her sisters, cousin Jessica, Nanny, Pop and Austin, Uncle Ben.  So far, she has done well with Day 2 of Round 2 chemo.  When this part of chemo is done she has to do Stem Cell Harvest and also re-evalution of how the chemo has done with the tumor, the spots on her legs and bone marrow.  I understand that they normally give Nulasta shot after the chemo, however this time they are going to give her GCFS, which she says is a faster release to have her WBC come up whereas the Nulasta is a slower release.  She also explained that if Emily doesn't have a good blood pull on her hickman port that they may have to place an IV in to do the Stem Cell Harvest, because we don't want the hickman line to fail, or then she would have to have a new one put in.  We are positive that this has just got to attack what she had and be gone.  That is what we are hoping for. So, we have quite a bit coming up for us and what makes these even harder is that all Emily wants to do is just be home.  She cries for home and it just is so hard to hear her cry, because the crying has gotten worse than what it used to be.  And just knowing what is ahead is really hard to think.  While I know One day at a time, it is still hard to think of what is coming.

However today has been a little difficult, we are still close to the room where we were before and the room Emily is right beside the teenagers room to hang out and all of the family has been around all day today with the family in that room, of the child that is close to end of life.  I have thought about that family all day, and praying for them, but wow it was so hard to see tears in the hall way, family coming in and out of the room and just the thought.  I seriously can't faithom the thought, and it just sucks. 

We are using the Traumeel S 4 times a day with her swishing it and then swallowing it and she is doing well with that.  We are really hopeful that this helps with the sores that she had before and we hope that she doesn't get them this time around.  

Well I should probably try to get some sleep, not sure how tomorrow will go.


  1. I Love Emily so much!
    Emily is such a strong little girl...as I walk down the hallway at the hospital I can hear faint sounds of giggling. As I open the door to Emily's room I relaize that it is Emily that I heard giggling. Your heart eases to know that she happy,to spite the fact that she has cancer and is having to go through chemo. She always has a smile on her face and is entergetic. She loves to do arts and crafts. I am so proud of Emily for being so strong!!! :)
    I LOVE YOU EMILY!!! <3

  2. I read your whole blog and I will definitely keep praying for all of you. I found a link that Emily would probably love to see, it's Justin Beiber doing book it. http://www.bookitprogram.com/bedtimestory/default.html