We’re sad.  The call came innocently enough on Monday afternoon.  As of Friday we had good reports on Trey’s bone marrow biopsy and CT scan both showing improvements.  Monday brought different news.

I was at practice and Rachel was home.  Our Oncologist called and told Rachel that the MIBG scan showed that the cancer had become more active than the one in July (though still less than in May).  He had conferred with the doctor in Philly who said that given that, Trey no longer could benefit from the radiation treatments that he was getting there (and basically that the one in July did not do much if anything).  Not only would we not be going anytime soon, there was no point in doing this procedure in the future.

On the one hand, who cares?  We didn’t like the toll it took on his body, it was very burdensome to our family dynamic (let alone the literal stability of our home), it was not a cheap ordeal, and if it’s not working than forget it.  However, say what you will about it (or what I say about it) I firmly believe that if it weren’t for that treatment in May that Trey would not be with us today.  The problem is…what now?  There is some clinical trial that Dr. Shaw is looking at for which Trey could be a candidate but his platelet situation needs to be much more stable.  This is why he is getting a bag of his own stem cells (harvested in 2011 for another treatment that Trey never qualified for) tomorrow.  We know nothing about that trial and he doesn’t even qualify for it right now.  As we stand…nothing.  Nothing between today and, well…then.

I’m not sure but I would bet that at around the time Rachel was receiving that phone call we were taking a break at volleyball practice.  I was by myself in the locker room and just for a moment Trey came to my mind.  “Take me somewhere” I’m sure he would ask me as soon as I got home.  I know this because it is all he ever says to me.  That line is code for, “Take me to 5 Below and buy me some blind bags (toys in bag that you can’t see through so you end up buying pretty much the same one over and over again).”  “All he wants are blind bags” I thought.  So, I should just buy him blind bags.  He’s not going to get to graduate, he’s not going to play sports, he’s not going to be in a play, he’ll never get married/have kids/etc.  I just felt so bad (for him, for me, for us, for everyone).  I teared up a bit.

The reality of it all is, I didn’t take him to go buy blind bags.  Do you know why?  It wouldn’t satiate him.  He would want more tomorrow.  He wouldn’t even “cherish” them today.  Yep, that sounds a lot like all of us.  We chase after the “blind bags” in our world day after day but do they complete us?  Do they meet our needs?  Do they quench our life thirst?  Even as I write this I can feel the folly of our daily prayer life with God and perhaps…perhaps why we don’t get our way more often but I digress.

I came home and Rachel told me the news about the phone call.  I checked in with her emotionally and we both confirmed that we were sad.  She said to me, “So, I guess we’re back to square 1.”  At the exact same time I said, “zero.”  She replied, “yeah.”  The house was on fire, the kids were dancing in the rubble, the phone was ringing off the hook, she was hurrying to the library as I was finishing the cooking of dinner for the night and in the midst of it all there we were…sad.

Later that night, during our fifteen minutes, we were going over all of Trey’s treatment “options” (things he has been on before that maybe, hopefully, but most probably wouldn’t help or he wouldn’t be off of them now) and what the coming days, weeks…months(?) may look like.  I said, “Look.  I get it.  God does not need medicine (though He could use it) to heal Trey.  It would be very much like Him to take us to this place where there is no mistake that the healing was entirely from Him.  That we would have to get to the point of complete and utter darkness before He intervened in that way.  I get it.”

You can “hide” all of the scripture you want in your hearts.  You can look at the “bright side” all day long.  The reality is, it hurts and we are sad.  The same is true for all of us.  We all have stories.  You can’t (and shouldn’t) feel better about yours because ours is “worse.”  You’d be ignoring your own pain.  That’s no good.  We all need each other to comfort.  We all need each other to heal.  We don’t need anyone (nor can anyone really) to “fix” us (collectively).  Rachel then summarized.

“It’s all too much.  We have today…to worry about.  We just don’t know enough about tomorrow (literally, not figuratively) to try to figure it out.  There are too many variables left out there.”  That’s it.  That’s all that it is.  We are sad…BUT it isn’t over,  he can still be healed, there is much more to do.  So…we move on.

Thank you for being here with and for us.  Thank you so much for your continued reading of my posts.  It means so much to me to know that our transparent life is having an impact on others.  If one of you has learned to cry with someone who is in pain I am honored and blessed.  That being said there is a new feature on my site.  You can subscribe to the blog and/or the “listen” section/”podcasts” which are pretty much my sermons.  Just go to the top of my website and click on “subscribe.”  You can also go to the itunes link right here https://itunes.apple.com/us/podcast/jay-mitlo/id924087067 and sign up that way.  Again, we appreciate each and every one of you.