The Joys of Neutropenic

Emily with Stewie, "Dogs on Call" on Friday's Clinic Visit

Here we are already a few days past the last day of chemo, which was Friday.  Friday went well though, Emily did great with the chemo transfusions and because it was Friday, they wanted to have her counts checked to make sure she would be alright for the weekend. Emily was so happy to have her pictures taken with Stewie from the "Dogs on Call" Therapy Dogs and she will be in the 2013 Dogs on Call Calendar. Counts came back and we had noted earlier with Emily's nurse that we were seeing an increase of tiredness.  After chemo, we were going to volunteer our afternoon and help with the Anthem Lemonade Stand, however Emily's counts stated otherwise.  Emily would need a blood transfusion. So another long day in the clinic, overall was a pretty good day. WBC and ANC was still looking good.

Turtle that we found in the yard

The weekend was absolutely great.  We enjoyed spending time with our bestest friends and just enjoying company and having a relaxing time.  Saturday was such a gloomy day outside, so much so it appeared to look as it was evening most of the day,  that we stayed in the house all day and watched a few movies and enjoyed have our friends be at our sides. We enjoyed pizza, laughing, talking and just being together.  And for the first time, we saw a turtle in our yard. How neat is that. We learned about the turtle we found and the girls and I even fed the turtle some lettuce.Thank you so much for coming and visiting.

Monday came all too quick, which meant another morning of time at the clinic. Counts scheduled for this morning and the neulasta shot. Emily has really become well aware of scheduling and when she needs to get that pesky shot that she despises. Just like it used to when she would need to get her port accessed, the fear of the shot to come, overcomes her.  The tears start and then the crying takes over. She tries so hard to be strong, but sometimes she just can't hold the fear in.  As you try to console her, all her mind allows her to think about is the shot to come and she can't let the shot out of her mind until it is over. For some reason today as I was sitting with her trying to console her, my mind ran back to the time when she was first diagnosed and they were trying to get an IV and was just having a hard time and her screams were all that I could hear.  No today wasn't like that, but I sat thinking about all that this 5 year old little girl had gone through and wished she could be doing anything else but this.  If none of this had ever happened she would still be in daycare, but today we continue to fight the fight with lots of hope along with many other families, old and new. She did get the shot, and did ok with it. She did scream as it the needle went in, but once it was done, she was ok and ready to get the port out so if she felt up to it later in the week, she could get into the pool.   Today she didn't need any blood products however, platelets were pretty low (just not low enough to require a transfusion but low enough to cause a bruise where she received her shot on her leg. Daddy also had to get a shot today, so telling Emily about daddy getting a shot also seemed to help calm her down a little bit. Todays counts also revealed she is neutropenic, the joys of neutropenic.  Back into the world of masks, not around people, no leaving the house, except for the clinic only and the fears of fevers and worse yet inpatient stays.  We are noticing the increase of crankiness, fussiness from the nifurtimox, but she is handling it well, and again we are proud of everything that she does.

The amount of food that Emily is eating is already starting to decrease.  Weight has already started to decrease as well, not much, but 26.6 lbs down from 27.5, but still for her every little bit is noticeable and very well taken note of at VCU.  Tonight we had dinner, and Emily took one bite and it was all she wanted.  She fell asleep about 730PM and just recently woke up, she said she is hungry, so the hope is she will eat a little bit. Daddy and I will continue to keep up with her and make sure she eats as much as she can so we don't face having to stay inpatient and receive TPN or anything else.  Emily will have clinic again on Thursday for count checks, but I have a feeling we will be watching her closely in what may mean that she will need to have to go and get platelets.

We ask that you send out lots of love and thoughts for Emily as the next few days, we will be watching for fevers and/or bleeding and we hope for no problems.

Brianna, Emily and Sue before they were heading.  Thank you guys for visiting, we miss you guys so much!