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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Saturday, April 16, 2011

Saturday, April 16, 2011

Emily on Wednesday at the start of stays at the hospital.  While she looks happy, she does a good job of taking the binky out of her mouth and smiling for you.
Still no update on what the bacteria was/is. At this point it is lets just treat it and get the fever gone, however I would love to know what it is that has caused this fever that Emily has had for the past 4 days, because it would make it so much easier knowing what is causing it.  Dr. Kahn didn't want to start Emily on another antibiotic after the Vancomycin because she was already on the Cefepime (which is a broad spectrum type of antibiotic).  

This stay in the hospital has been especially hard on all of us. Emily especially, because she just wants to be home or she wants to be camping.   I think instead of crying to go home now (which she has done for the past 3 days), she isn't happy about being here, but she is just trying really hard for us to be understanding as to why she has to be here.  She knows it is because of her fever and that it has to go away, but she is also in pain.  She has a few mouth sores (nothing like the amount she did after the first round, but she still has a few) that are really causing her some heartache.  These pesky sores won't go away until her counts start going up, so that is a real PIA.  

Do you ever meet someone and think what an amazing person they are and the compassion they have, is unbelievable.  I have never met another child like Emily.  All of my children are very special in their own ways, they really are.  But Emily just amazes me and she has this way about her, that other people immediately see as well and I am not just saying this because she is my daughter, but it is true....Emily will be 4 on May 30th and just the sincere compassion she has and the love that she has for other people is just amazing.  Emily always thinks about everyone else before her self and when she gets something she always wants her sisters to get something too. It just amazes me the type of person she is, and I hate, we hate that this mess had to happen to her.  I watch her and when one of her sisters are crying about something, she wants to give them something so that they don't cry.  Isn't that amazing?  I just hate that Emily has to go through this.

Doug and I really want her to have a very special birthday, again our hope is that she won't be in the hospital on May 30th, however it is really hard to calculate since we have round 5 coming by and then surgery so I am not really sure where she will be at.  Just amazing that she will be 4 years old on May 30th.  I can still remember the day she was born, what a very special day. 

Emily in her bed tent to take place of camping or at least to help it
Anyway, so since we are not camping this weekend and we are at the hospital dad went to 5 different stores and found a Princess Tent to put on the bed so we could go camping at the hospital.  It is by no mean the same, but she was happy (as well as to be expected) and you can see that she is trying to put the happy face on, but not overly happy!  I put clean sheets on the bed and then dad put it together.  Its pretty cute and it is even big enough that dad or I can get in with her.  It is not quite as long as we are, but we will make do.  Emily was very worried that I wasn't going to sleep in the bed with her and I told her that I would make do and would sleep with her. Its actually not that bad and if I could take a picture of myself, Emily and the tent I would, but I can't.  (check the blog, I did take a picture of Dad and Emily in the tent though, www.emilyhubbel.com)

Emily and Dad hanging out in the tent

From our understanding it still looks as if Sunday will be the day we hope to go home, we haven't heard any different and we just hope that things are in a upward spriral right now and not a downward.  This long period of having a temperature and the counts being low worry us because of the cumulative effect of chemo.  Dr Kahn did exlain today that there is a reason that there is 21 days for each cycle because her body gets knocked down with the chemo, the period in between will give it chance to come back up a bit, but not completely stand up and he said you don't want it too because you want to be able to kick this and get all the cells gone.  it makes sense, but the periods in between litterly suck because it is such a small period of time and then she right back in for another round of chemo!  UGH. But of course we are very worried about her surgery and the stem cell transplants because they do really worry us and the effect they have on her.  

Anyway, I am exhausted again and am going to head to sleep. 2AM again, it really kicks me in the but for the next day!   I miss the girls and my husband and am ready for some time at home with the kids and Doug!

Thank you so much for all your love and continued support, it means so much!!!  Hold your kids tight and love them with all your heart!  I love you my girls!

I love the picture of Doug and I, so I had to share.  But this is a picture of Doug and I at the end of the night at Home Team Grill for the fundraiser..  I LOVE HIM


  1. What a trooper Emily, God Bless

    Puse/sonally Cute & Sassy
    Janice Garza

  2. Continuing to prayer for yall- Gods healing, His strength and His perservance. Hugs!!!

  3. We are always praying for you guys and hoping that today will be the day you'll get to go home!! I can only imagine how painful and draining it is on the entire family! Please know that Emily and the rest of you are always in our prayers, and that we're always here for you if you need to vent, talk, help, babysitter or anything at all! We love you guys!!