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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Tuesday, March 15, 2011

Tuesday, March 15, 2011

Emily waiting by the window for daddy to come and pick us up on Sunday.  She is smiling but underneath not feeling great.
Well we ended up having to stay in the hospital Saturday for more hydration because Emily wasn't holding anything down, she was still throwing up and and diareah had started.  Counts on Saturday morning for her white blood count was 4.1... Saturday she couldn't hold anything down not even the Life Mel Honey...Sunday morning her counts were 2.7.  I hope that we can get her counts up and she can start taking the Life Mel Honey again because I can really see that it is working being that Monday 3/7 they checked her WBC and it was 3.2 and then on Thursday morning I believe it was her counts were 4.5. Saturday was a long day though staying in the hospital...Emily felt horrible and each time she got sick, my heart broke, it made me sick to my stomach. The saline flushes were making her sick everytime and she would immediately throw up.  Once the nurse figured out it was the quick push back up on the IV (or RV as Emily calls it) it was pushing the Saline in too quick and was making that happen.

Sunday the status hadn't changed any but she was very ready to go home.  They checked her counts and WBC was 2.7 and her hemoglobin was 7.3, so he wanted for her go get a transfusion.  It took forever just for the blood to come up and once it did get started it took 3 hours.  This was the 3rd time she has gotten blood, and everytime I hate it even more.  Emily finally got to go home later yesterday but with the deal that head back to the clinic to get her Nulasta shot and for Critical Care to come to the hospital and show me how to use home fluids if she wasn't eating or drinking.  

We picked up the girls and headed home.  It called for a late dinner, but Emily tried, she tried mashed potatoes.  It was a no go,  tried toast and it was a no go.  She woke up over night with diareah and throwing up, which she did several times at the hospital.  Needless to say this round hit her hard, harder than I thought it would.  She tries to have high spirits or smile when I take pictures, but really if you look at them, you can tell she doesn't feel good.

Emily waiting for the IV Fluids to finish so she could go home with "Little RV".  She was exhausted!

We took her today to get the Nulasta shot and I hate giving my babies shots, I really do.  She did well, it is just the initial no I don't want to and then it is over and she is fine.  The nurse practioner, Ann wanted to give her 2 hours of IV fluids and Critical Care would meet us to show me how to do the Home IV Fluids.  Emily calls it the "Little RV".  So they sent us home with IV decadron for nausea and fluids to do overnight for the next three nights. Today she hasn't had any diareah or throwing up since 10AM, but has only eaten watermelon tonight and was able to hold it down.  She tried to eat a piece of macaroni, but immediatey knew her stomach couldn't handle it and thought she was going to get sick, but she didn't, she was able to hold it down.

So tonight she has gone to bed with "Little RV".  She was exhausted. Dad and I got really worried though she turned pale and she was really cold to touch.  We checked her temperature in her ear for about 45 minutes, and it was 95.3 to 95.6 and it scared us.  I sent a text to another NB mommy friend and then we decided to call the oncall at 12AM.  She wanted us to check by other means, a low temp could also mean an infection and cause for concern.  So we checked under arm and it was 96 and then we woke her up and checked under tongue and it was 98.7.  We finally felt better.

We are so ready to have our playful Emily back who liked to giggle, because we haven't seen her in a while because this round messed her up so much, so we miss her.  We miss her a lot.  Her sisters don't really know what to think, because she hasn't been around, but we hope that she will be coming back to herself here soon.  

We have to take her back to Thursday to have her counts checked and see where she is.  Please leave lots of love and thoughts as our biggest concern is too keep her counts up so she doesn't go back until the next round starts.

Thank you everyone for your love and support as we are going through this, it really means a lot to us.  Good night to all, I gotta head to sleep to get up for work tomorrow!  


  1. Oh Goodness! This round really did hit her hard! Well i think about her everyday! Im prayingbfor you all! Tell Emily i love her! And I ccant wait to see!

  2. I wish I could wrap my arms around your whole family!! Please know I am sending my love, strength and thoughts to all of you every day. What helps get her counts up?

  3. My heart goes out to you, your family, and especially Emily. She is in my thoughts and prayers daily. I could not imagine what you are goin through as a mother, the ache in your heart. No child deserves this I hope emily is feeling better soon and you get your giggly, playful lil girl back soon.

  4. I am sorry for your pain. I hope Emily is giggling and happy again very soon.

  5. good luck Emily! We love you and are praying for you and your family...soon you will be feeling stronger while all these meds do their jobs! I know it must be so hard but maybe it is just these strong meds doing what they need to do and then things will look up...I love reading about your journey so I can say extra prayers for you and your mom who writes this loving blog about you and your journey through all of this...hold on tight and feel better, love, Kathy