Sunday, April 17, 2016

Two Steps Forward, One Step Back

Good News: Ellie has been trying, and succeeding, at "standing up" on her knees while in her crib.

Bad News: It's repeatedly in the middle of the night when she should be sleeping.

Ellis is improving. That is very evident to us. She is happier, slowly eating better, and her color is improving. (She looked pale yesterday, but a call to her doctor calmed us. She has her color back today.) And, she is slowly trying to move around. Early last night, she went from a laying down position to sitting all by herself, and I almost cried. I have mentioned that she does not want to walk, but really, she does not want to move at all. So, the fact that she is repositioning her body on her own is a huge improvement!

She is even pulling up on to her knees, which was extremely exciting at first, but lost it's thrill sometime around 2am last night. She woke up every two hours, 10, 12, 2, 4 and 6, and remained awake for at least 30 minutes. (Thank you Mike for getting up with her every. single. time.) The time in between, her sleep was fit full at best. So far, tonight is shaping up to be like last night. If you are reading this, please pray that she sleeps well tonight.

Somehow I missed it, but after further research, in addition to vicious mood swings, the steroids can cause insomnia. It has been suggested to try giving her evening dose earlier in the afternoon to avoid this disruption. We will try it tomorrow night and pray for a better outcome.

As always, please pray for Ellie's complete and permanent healing.

Pray that all of the nasty side effects from the steroids go away. (Insomnia is the big one now!)

Pray that her numbers continue to go up in anticipation of her next chemo treatment this Wednesday.


As you may have noticed, I am slowly trying to make this blog "pretty". It's quite the learning curve for me, so if you have any helpful tutorials for me to watch or links to send me, I would be very grateful. (I built a web page in college, with some HTML coding too, but somehow this is a little different than the Geo Cities platform I used then. Oh, and it's 13 years later, and I'm three kids in. #mommybrainisreal) Fun fact, that website still exists! So, see if you can find it and have a good laugh!


"I think I'm gonna catch up on my correspondence." (Name the show!) I am slowly working on responding back to everyone that has reached out to us. If you have texted me, I believe I am caught up! If you have emailed me, well, I'm about 50/50 on that. I hope to respond to all of those soon. 

Now here's where is gets a little awkward...

If you have reached out to me, either directly, or through a mutual acquaintance, thank you! You have no idea how much it means to our family to have help and support from people that do not even know us. From the bottom of my heart, thank you. I have kept every single contact that has been sent my way, and I promise to do my best to follow up. It may just take a while. 

I was struggling with this feeling for a while, and could not figure out why. I want help, someone to talk to, someone that knows exactly what we are going through. But at the same time, I don't want to talk to anyone that is associated with "cancer". Silly right? Completely opposing thoughts. But then, my friend Catie summed it up best for me, "You need to have your story first."

So, here I am, going through my story. And, I feel I can say that because I know that all five of us will have different takes on how this affects our family. But, I also know for certain, this will not break us. We are ALL in! 

Beware, what you are getting here is Ellie's story. but it's also my perspective of her story. To be honest, this blog is:

1. a cathartic means for me to sort out whats going on in my head
2. a way to update family and friends on Ellie's diagnosis and treatment
3. anything else God wants it to be

Here we are, at the end of a longer than expected post that went a lot of different directions. Thank you for your patience with our family as we adjust to this new normal. Thank you for your patience with me as I adjust to putting our family "out there". (Social media and I do not mix. Both Mike and I have been off Facebook for several years. The idea of this blog is a little scary.) 

And, as always, thank you for your continued love, kind words and prayers.


  1. We are praying for Ellie, and for all of you. I'm glad to hear that Ellie's numbers are trending up. We will pray for that to continue. I wrote a blog during our journey to bring home our daughter. I do think it is therapeutic to put your thoughts out there. #fightElliefight

  2. Thank you so much for your prayers Suzy. :)