Saturday, August 20, 2016


It has been exactly one week since Ellie spiked her fever resulting in a trip to the ER. I am thrilled to say, that by the grace of God, once we returned home, Ellie never had another fever! This week has not been without its challenges, but the fact that she has not had another fever is a small victory.

The return of a cold has led to much discomfort for her and trouble sleeping. For three nights she slept in bed with me, simply so I could keep her propped up during the night. For the past two nights though, she has been able to sleep in her crib without waking up during the night.

Even though Ellie was off of steroids this past week, it was clear from her attitude that their effects were just starting to take place. She has been very moody and sensitive all week. But, she is starting to eat a bit more food which is very necessary for her tiny body. 

On Thursday, Ellie went back to the clinic for her check up, counts and chemo. (More on her counts in a moment.) The entire process was much harder this time, thanks to the steroids. We got through the day, but not without a lot of struggle and tears from Ellie. But honestly, can you blame her? 

While in the infusion center getting chemo, Ellie is able to order anything she wants for lunch. That particular day her request was: "I want hot dog and chicken nuggets and french fries and pickle. I want all those things." So, yeah...she is definitely getting her appetite back, but slowly. She ended up not eating much of it. 

"Where's my pickles?"

That same day Ellie went back on steroids for a week. If my memory serves me correctly, this is the last time she will have to be on them for about 3 1/2 months. Once she's in the Maintenance stage of treatment (December/January), she will have to go on steroids once a month for 5 days. This will continue until she is completely done with treatment (August 2018?).

Now, back to her counts.

Currently, Ellie is neutropenic. This means that she does not have enough white blood cells to fight off infection. Every time we visit the clinic, there is a very specific number checked that is used to judge her "state of wellness" It's her ANC or absolute neutrophil count. It's a function of several different blood levels, but helps to give a good indication as to what's going on with her blood. For children in the "healthy" world, neutropenic means an ANC of <1500. For children in the "cancer" world, it means an ANC of <500. When Ellie was first diagnosed, her ANC was <100. Recently she has been rocking numbers in the 4000-6000 range. I know! So strong! So good!

Her current ANC is 440. Neutropenic.

We expected this. We knew that this could happen. This is partly why this stage is such a hard one. But still, it feels a bit defeating. There are many bumps along this road, and we are smack dab in couple of big ones. So, until these numbers go up, Ellie is being isolated. Well, as much as we can isolate her while still reasonably living our lives.  

Here is what that looks like right now for Ellie and our family. Ellie stays at home, goes to the hospital and rides in the car. The rest of us try to avoid sick people and germ-filled places as best as we can. When any of us arrive home after being out, we immediately take off our shoes and clothes. Depending on where we were, we will take a shower. But always, we change our clothes. Obviously, lots of hand washing. We still take Eva and Nora out places, simply because we don't want them to miss out. So, I'll take them to dance, but they are not allowed to play in the playroom there. This is the best balance we can find for right now until Ellie's numbers go up.

Honestly, it all makes sense. Leukemia is a cancer that will repeatedly try to come back. This is why treatment is so long and harsh. If by chance Leukemia cells had returned in Ellie's blood, this intense period will eliminate those bad cells. 

The upside is that even though Ellie is very immunocompromised right now, it is not a red flag. So far she has been right on par with her treatment, and this is no different. The most important thing is overall trend, and Ellie's trend is very positive. (That last line is straight out of Dr. Mogul's mouth. And, I must admit, it is comforting to hear.)

Please continue to pray for Ellie, especially during this fragile time. Eva and Nora start school next week, and that brings a lot of worries. Pray that Ellie's counts go back up, and that her body is able to remain strong for the next 6 weeks. 

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