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, April 30, 2012

Not Feeling Well -- Day 8, Round 2

So here we are Day 8 after the chemo started 8 days ago. We had a pretty calm weekend after the ASK 5K Walk. I did deaccess Emily Saturday afternoon. That was somewhat eventful, because it was the first time I had ever done that and our nurse we had last week, didn't give specific enough instructions. So, once the dressing tape was off, I tried to take it out and it wasn't budging and I freaked out so I had to call Critical Care who helped me and it was successful. Sunday Emily was feeling stuffy/runny nose, but still was feeling ok. She woke up several times unable to breath or from coughing too much and was up at 4AM on playing on the iPod coughing. She said her throat was sore and she was drinking lots of water.

Emily wasn't scheduled for count checks until tomorrow, however this morning when she wasn't feeling well, couldn't breath and coughing, I put a call into the clinic to see if there was an antibiotic that we can put her on to get this nipped in the bud. Instead they wanted to see her in the afternoon to do a throat swab for strep throat, check her counts and then give her the neulasta shot. This meant that Emily would need to be accessed again, and her anxiety was high and she was extremely upset knowing that she would need to be accessed. Thankfully it was done quickly.

Well Emily's counts have dropped to 0.1 which means her ANC can't be registered with no WBC. OMG they dropped quickly, Friday's WBC counts were 3.5 and today they were 0.1 WOW. At this point, its a waiting game for her to get a fever. Our hopes is that she does not, like we did last time, and we really hope she doesn't. But with this cold, we are not quite sure what she has because the strep will take 24 hours to come back and really there is nothing that we can do to prevent this. If is a cold, or strep it sucks with the fever and low counts.

Tonight since we have been home from the clinic, Emily has been sleeping on the couch not wanting to be messed with. At one point she woke up in sweats, so we put a sheet on her, but thankfully no fever so far, I think we were at 99.8. I have been sitting by her, still doing so while updating and she is rubbing my arm. Such a sweet girl, I hate to see her have to go inpatient with a fever however the thankful part she is already accessed and we won't have that added in this time.

Send your thoughts and love that we stay home like we did last round!!

We have received a few emails of people who want to send a gas gift card quickly to us for next weeks travels to Michigan. We really don't want to leave Brianna home this time because she is having a harder and harder time without us and Emily and we just don't want to do that to her again! It is so not fair to her. So, it looks like we will need to leave Monday night to be there by Wednesday morning. The address to send gas gift cards is:
The Hubbel Family
PO Box 5383
Midlothian, VA 23112
Hopefully we will not be inpatient with low counts and not be able to make the drive for her scans because I know previously she had low counts quite a long time before they started to go up. Please send your thoughts and love that she stays home and we are able to make the trip next week.

Thank you so much for you love and thoughts as we continue to fight the fight. Emily is such an amazing kid!


  1. Hang in there Emily. I am praying very hard for you and hope you are better soon. luvs you--Alex

  2. How I love you sweet Emily. How I wish I could give you a hug and when you are all better give you a puppy. Until then all I can do is send my love and hugs sweet baby. loving you col

  3. Praying for no fever! Keep fighting Emily, you are amazing!

  4. As always I am sending all of you my thoughts, hopes and strength!!! I think of you everyday. Thank you for taking the time to update. I continue to be in awe of the incredible strength of all of you!!!

  5. The Cash Hyde Foundation is working on a documentary. We are looking for families that are battling cancer with their children. please message us your info and together we will make a difference!
    Mike Hyde Kalli Hyde

  6. Many prayers and much love to you.