Wednesday, October 5, 2016

Chemo Hold...Again

Yesterday, Ellie was scheduled to begin her last round of heavy treatment, Interim Maintenance II. As you may have guessed, she did not make counts. Her WBC, hemoglobin and platelets were all great, but her ANC is still weak. 250. It needed to be 750. So, no chemo this week and she is once again neutropenic. The side effects of Delayed Intensification are still rearing its ugly head. 

Now, we wait a week and try again next Tuesday. Of course we are bummed, but I know that it is probably for the best. Nora has had congestion off and on for the past few weeks, and this might possibly be the culprit. That tiny bit of germs could be enough to keep Ellie's fragile immune suppressed. Again, this is not uncommon, but unfortunate. The ANC is often the last number to bounce back, so we wait patiently until it does.

With Lauren, one of the Nurse Practitioners

Since that is all I have to update right now, I thought I would share a story from when Ellie was in the hospital. This blog is for our family more than anyone else, and this I do not want to forget. Especially since Eva and Nora have made me repeat it every day, several times a day.

On Friday while in the hospital, Ellie was receiving what ended up being her last blood transfusion. She was recovering, had new blood pumping through her veins, and was feeling good. Finally! I was sitting with her on the couch in her room. Odds are good that we were watching Daniel Tiger. 

Like most toddlers, she often thinks that her feet serve the same purpose as her hands: to touch and grab anything within her vicinity. With the IV tube snaking around on the couch, connecting her port to the blood bag, naturally she began playing with it with her toes. Before long, she was swatting at it with her foot. It was driving me nuts. 

"Ellie! Don't kick the blood!"

Oh, the things you end up saying as a parent that you would never say otherwise.

Immediately after saying it, I really heard what I had said. And so did Ellie. She immediately starting laughing, which made me start laughing. At that point, there was no turning back for her.


Ellie yelled that over and over and over until we had an audience, with nurses both in our room and in the hall laughing. Oh, and it should be mentioned, that as she was yelling/laughing at me to stop kicking the blood, she was still continuing to kick the blood. 

Not the funniest story out there, but still pretty entertaining I think. It helped to boost Ellie's spirits, and Eva and Nora love hearing the story. So next time you see one of them, please tell them not to kick the blood.

One last bit of Ellie humor. The other day I realized that she was quiet in her room. Any parent of a small child knows that this means they are up to no good. I slowly crept back to her room, and found Ellie like this:

Yup, she's using a grabber to try and get her pacifier.

We have been slowly trying to wean Ellie off of her pacifier. It got really bad during DI. So now, we make her keep it in her crib when she's not sleeping. She became upset about something, told me she wanted it, and I told her no. It looks like she knew better and decided to take matters into her own hands. 

When I walked in, I immediately laughed, raced out of the room to grab my phone for a picture, came back to the room and gave her the pacifier. I figured after all of that effort, it was the least I could do. 

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