Wednesday, April 20, 2016

The Roller Coaster Ride of Sleep

Our Ellie has cancer, and it is terrible. 

This is our reality right now.

Some days are bad, and some days are ok. When it's ok, we try to take it with as much joy as we can muster. (After posting this, I realized that this wording makes it sound far more depressing than it really is. Let me try again.) When it's ok, it often seems like this isn't happening to Ellie, and we go about our "regular" life as best as we can. When it's bad, well, it's just bad. 

Ellie had two really bad nights in the hospital. Then, her last night in the hospital and her first two nights at home were wonderful, with her sleeping entirely through the night. The two nights after that (Saturday and Sunday) were awful. Nothing we did would make her go to sleep. Because of the insomnia, she simply did not need to sleep, and us trying to make her sleep just made her upset. 

There is little we can do to adjust her schedule, medicine, eating, etc, to avoid this. Worse case scenario for us seems to be that she goes through cycles of good sleep and no sleep. Two bad, three good, two bad, two good. This is what we have experienced so far. For the last two nights, she has slept completely through the night without issue. 

I said that there was little we could do to help the problem, but there was something that we did do. Ellie gets her steroid twice a day, but it has to be given 10-12 hours apart. This meant that she was getting her steroid sometime in the morning and right before bed, which was winding her up. For the past couple of days, we have given her the steroid almost immediately after waking up (around 7am), so that way we can give it to her again around 5pm, which is still two hours before her bedtime. Then at 7pm when she goes down for bed, we give her a dose of Benadryl. This has worked well for the past two nights. We are really hoping that it is making a difference, and not just a fluke that she has been sleeping well.

On an extremely positive note, Ellie is moving around! She crawled around a bit yesterday, and even stood up on her own while holding onto something. Yay! We couldn't be happier that she appears to be regaining her strength.

Here's a funny moment from the past few days...

(some background)  Sunday night was rough. It culminated at 4am with Mike moving to the couch to try and get some sleep and Ellie coming into bed with me. After fidgeting for while, she decided that she wanted to just sit up in bed. Eventually I caved and let her watch Daniel Tiger on my phone. That didn't last for more than one episode because I kept falling asleep, thus dropping the phone. I put her in her crib, screaming, and after a few minutes Mike came and got her, and went outside to the car with her so no one inside could hear her screaming. By 7am, we were done. 

It was just after 7, and Nora was now awake watching a show with Ellie on the couch. They had a few "snacks", but no breakfast yet. Mike and I are another room on the couch, exhausted. 

By 7:15, Eva comes out, chipper after a full night of sleep, and asks "What's for breakfast?"

I just sort of waved toward the kitchen and replied, "Anything you want."

Her face lights up. "Really?!"


Now, most children would probably use this as an excellent excuse to cram all the junk food they could into their mouth. Not Eva. She goes to the fridge, and grabs lunch meant. "Mmmm...yummy meat."

She then goes into the family room where her sisters are, and we hear her announce:
"We haven't had breakfast yet, so apparently we are going to have roast beef!"

Bless that little girl.

She made sure that each one of her sisters ate, and it was a protein too!

Ellie standing!


  1. Ha!!! Love that story!!! My kids would've grabbed the worst foods possible!

  2. Yeah, ours are by no means health nuts, but it was nice to know that in a pinch, Eva would get a balanced meal in them.