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, March 31, 2012

Day 13 New Trial

Its been a couple of days since I updated to let you all know how things are going.. Emily had clinic on Thursday at VCU hospital and Emily's counts hit rock bottom. .1 White blood Count and Emily's hemoglobin was very low, so she needed a blood transfusion and she needed a platelet transfusion. The chemo made her counts drop quickly. We were worried that if she were to get a fever, what would we do when we need to be at Levine's on Monday morning, for Day 15 complete Physical by Dr. Kaplan as part of the protocol on this trial. Levine's stated we would come once we were released inpatient from VCU. It was a very long day in the clinic, we closed the clinic that night. We got home and Emily seemed to have a bit more energy from the day before.

And just like that, 1 hour later and Emily was exhausted and had no energy, laying on the couch saying she was tired. Checked her temperature and it was 99.7. CRAP, fever watching was not on our menu for the night or weekend. At one point, Emily was quite warm and we called emergency number and they said to bring her in. I continued to check her and it stayed under that number of taking her in, so we didn't take her in. I was up every hour on the hour checking her temp. We did tell Emily that we probably would need to go to the hospital and Emily cried and begged and pleaded not to go. She told us she was scared and that she didn't want to get chemo anymore. A 4 year old pleading not to go to the hospital saying she is scared and would say, "If I drink water will it help my temperature, right mommy, right daddy?" Both Doug and I were crying and watching our daughter plead with us not to take her, pulls your heartstrings, makes your heart hurt and just want to fall to the floor and cry.

Friday morning, Emily still continued with a low grade temperature, but we started the day like we normally would during the week days, and Emily was being very clingy and wanted to be carried everywhere. We knew we needed to take her in, and then received a call from our nurse, asking where we were and that the physicians wanted to see her and maybe give her some antibiotics and take it from there to see if she needed to stay inpatient.

No fever while we were in the clinic, but they did access her and gave her antibiotics and checked her counts again. Hemoglobin and platelets looked good and WBC went up by .1, so we left her accessed so she didn't need to be accessed again on Monday or even over the weekend in case she did become inpatient. We went home, which Emily was happy about and we took a nap. When we woke up the low grade fevers started again getting close to the magic number where we would need to bring her in. So, it was another long night of being up every hour to 2 hours checking her fever and seeing if she was ok.

Today, has been a better day, not as far as energy levels because she has no energy and doesn't even really want to walk around. She has been laying on the couch for the past 3 days with no energy and she is not eating. We are giving her periactin in hopes to get her to eat. Her weight was checked and she has already lost 3 pounds in 2 weeks of starting this trial and that is not good. Emily only had a popcicle, a few bites of macaroni and 1 minibite corndog. She can't afford to lose weight and we worry about the thought of having to put her on TPN. Today she has also been running low grade fevers, but she has been laying around all day being very clingy.

Tomorrow morning we leave early in the morning for North Carolina. We are going to head to Aunt Karen's house and stay the evening and leave early for Emily's appointment on Monday morning. It will be nice to only have to take the van and head there and then after the appointment head home. However Emily cried today about not wanting to go anywhere, she just wanted to stay home, so we are hoping that tomorrow will go much easier. Emily has been laying down and hasn't wanted anyone to mess with her, she just wants to be left alone. We hate to see Emily like this, we hate to see her down and not want to be running around playing.

We ask that you continue to keep Emily in your thoughts as we go through this trial with the hopes that this trial does what it needs to do. VCU has been great in handling Emily and we appreciate that.

We also ask that you keep Ila Jean in your thoughts, Ila is fighting for her life against this horrible disease, neuroblastoma.

Going to end this tonight, because we have an early morning and the past few nights have been light on the sleep. Make sure you hug and kiss your kids and tell them how much you love them.


  1. Keep fighting, dear one. It is tiring work being as strong as you are, and more people than you could ever possibly know are watching and cheering you on. You make mommies and daddies and little girls everywhere feel VERY PROUD. Praying for your whole family in the middle-of-nowhere, Virginia. <3

  2. Prayers out for you all ... xo

  3. Hi my three year old has been battling with neuroblastoma for 10 months now she relapsed around 3 months ago and will be starting themibg treatment this coming Monday followed by ahaplo transplant. I don't need to tell you how terrified I am. Please is there any way for me to get in touch with you? JULIE FREED VIENNA

  4. Hi Julie, you can reach me by emailing me at ShannonHubbel@hotmail.com

  5. I'm worried that you haven't updated in almost 2 weeks. Hope you're ok.

  6. Hi Julie,
    I'm new here. I saw a tweet on Twitter asking for prayer for Emily so I followed to your facebook page and now this blog and will connect with your Caringbridge site.

    I will stand beside you in prayer, intercessing for Emily. I have a prayer blog and if you don't mind I would like to add Emily to my prayer page. I do have a few people who stop by and pray for the people there. You can check out the blog at http://cprezra823.blogspot.ca

    Praying for Emily!