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, March 20, 2011

Sunday, March 20, 2011

Hey guys, its been a pretty long week around here.  The beginning of the week was pretty tough as no matter what Emily tried to eat, she was either throwing it up or coming from the other end.  She was hungry, but just couldn't eat.  We only ended up using the "Little RV" one night however on Monday night and it was pretty easy to use at home.  We used the disolvable Zofran as well since she couldn't handle swallowing the meds and used Decadron through the IV to help with Nauseau.

Tuesday and Wednesday she tried to eat more food, but just continued to feel like everytime she ate that she was going throw up.  She would eat a little bit, but each time ran to the the bathroom hugging the toilet.

Thursday we had to go to the clinic to get her counts checked, and her counts were low, but she hadn't hit rock bottom yet, her White Blood Counts were .5, so it was a first time we had gone and not hit rock bottom, but she is doing great.

Emily has lost a considerable amount of weight that we are keeping a great eye on.  Even got her on some meds to get her appetite back.  We have noticed that today she did really well eating, so we are really keeping an eye on her eating and making sure she doesn't drop below her normal 30 pounds, that is very important to us.

It is with sadness that we tell you that Grandma Connie lost her fight tonight.  We received the call last night that she wasn't doing really well and packed up to go.  Grandma Connie is no longer in pain, but we really want to tell you, WE LOVE YOU! This is a part of our journey that makes it really hard because of what Emily is going through.  Doug and I both are pretty torn up about it, but we know she is in a better place. Please say some prayers for our family and all of his family in Massachussets.

Monday we have our appointment with Children Hospital of Philadelphia to get a 3rd opinion just to have them review all of the scans and everything that VCU Medical Center has done. Doug and I are not nervous about what we already know, we are nervous about is there anything that we don't know that may come up. We also will be meeting with the surgeon to help get a better knowing of what we may be doing for surgery after the 5th round of chemo.  Then Tuesdy we will be back home and then Doug will head back out again to Massachussetts to be with his family for the funeral.

Off to spend some time with Doug while the girls are sleeping. We are going to make the best of the time away before the next round of Chemo starts in another week.
I will try to update tomorrow with some pictures. 


  1. Hello! Our family lives in PA and I couldnt help but be drawn to this story. I hope and pray God will cure this beautiful little girl...as I have 4 children myself, I feel your pain as parents. I am also sorry to hear about your "Grandma Connie". Sending thoughts and loving prayers for your entire family. God Bless!

  2. We have been following your beautiful Emily on caring bridge from the beginning of this journey. You are such incredible parents and Emily is so lucky to have you. She is in our prayers every night!! And I know she will beat this. I was heartbroken yesterday to hear that Sal Vanni lost his fight. I'm hoping that other families going through this can offer their support and love....I know it made all the difference when we went through cancer. It is more than heart breaking. Please share and show your support. http://www.caringbridge.org/visit/salvatorevanni

  3. I jsut read Emily;s journey and wanted you to know that she will be ino our prayers every dingel day. My heart goes out to you. I am a mom with 2 small children and I can't imagine going through what you are right now so am sending some sisterly love to you and your family!

    I will continue to follow your journey!