Hallelujah, but the roof's caving in

Ev has had a cough for months, high temps off and on, some ear aches and none of them led us back to the hospital, unscheduled. It appeared as though we had evaded the flu season. But, then we got caught. A week to the day, after our last monthly visit, we found ourselves in the ER due to a continued high temp and Ev feeling horrible. (It wasn't an emergency, but clinic wasn't open yet).

So, Ev got a break from chemo meds for about a week as his body needed a break to regain from being attacked over and over from this cold and that. When we hear the word break we think that its a chance to kick back and relax, but really it just changes the plan of attack. He had become neutropenic, which brings on adaptations of a different sort. And, now a good portion of his body is covered in an itchy rash.

But, anyhow, here we are...his counts are back up just enough to continue with chemo meds.

And we go back in a week for our scheduled monthly visit. Blah! Five visits in a months time...we liked and had gotten used to the space between visits. But that's life...you can't always choose what to fight or when to fight, you just have to be ready.

The continual up and down makes me think of the song "A Woman Caught" by Penny and Sparrow. Jeff and I got to see the band last night and the funny thing is...the song is about a prostitute. I am not referring to that part. What I think about are the lyrics "hallelujah, but the roof's caving in." 

This journey has felt like that the whole way through. It's a smile through tears, it's wanting to break something while wanting to bear hug someone, it's feeling apathetic and then overwhelmed by emotion, ...it's hallelujah when the roof caves in.

Hallelujah:

Ev woke up at 1:30am with a high temp and this is what became of it...sleepy love. We all found ourselves in the living room awaiting what would happen next. This is my Hallelujah...the truth of love revealed. My boys already know the many facets of love. Their lesson on love, sacrifice and life and death came early, but they are blooming that much sooner...sharing love and compassion.

but the roof's caving in:

This is in the ER about 6 hours after the photo above. You can tell he wasn't feeling well, but he's watching cartoons and you can still see some chocolate on his lip. This is my roof caving in (...because I can't and would never capture the torment that can occur between some of the photos I share, but this one in particular was very rough). One of his nurses actually apologized to me last week for having to watch and hold Ev down...you can picture this fighter, literally fighting, right?!...with tears in his eyes! It isn't for her to apologize for, but it was so helpful to me that someone could see and realize how hard that part is and as a mother too. Jeff and Ben have seen it too...it's horrible for Ev and therefore me, and the rest of his sleepy love buddies.)