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Yes, Trey is standing in front of Hot Topic.  He watched a video where some kid got a sparkle “My Little Pony” blind bag from there.  Ever since he has asked to go to “Hot Coffic.”  So…we went.  It was pretty funny watching him walk around inside.  Beyond that here are some quick facts that will give you a pretty good idea how things are with Trey right now.

1.  He has been struggling mightily with his platelets (those things that help your blood clot).

2.  It’s not soooo much that they have taken a hit (due to the radiation treatment in Philly) but he is rejecting any additional ones he is receiving via IV (for no apparent reason).

3.  There is a way to “perfectly” match the platelets to him (called HLA).  He got a few bags of those yesterday but to not much success.

4.  You are supposed to have 150 (thousand)…he had 8, then 7, then 3, and then only 1.

5.  He began to bruise quite easily and get a lot of petechiae (tiny little blood spots) all over his body.

6.  This has been going on for over 10 days.

7.  He should be making more on his own any day now, any day now, any day now.

8.  That could be why his count went up yesterday from 1 to 3.

9.  It is very draining for us because we just can’t completely protect him.  Stick him on the couch and don’t let him move?  There is a coffee table right there.  Move it?  There’s a lamp and an end table.  Move those?  Now it’s dark.  Let him watch tv in the dark?  He could hit himself with the remote.  Leave him in bed?  He already hit his head on the wall flopping back onto his pillow.

10. It’s hard to tell Joe and Bella to love him and that he’s “fine” while freaking out every time that they play rough even near him let alone with him.

11.  All of that being said when they de-access him (take the needle out of his port) he barely bleeds at all which confuses even the most experienced of nurses.

12.  He is emotionally fine and not a bit daunted by this…as always.

13.  He looks like he’s been shot with both a BB gun and a crowd control bean bag gun just before being dragged by horse down a rocky path.

14. Sunday at church during a song (Your Love Makes Me Sing) he was in Rachel’s arms.  During the chorus of, “Hallelujah, hallelujah, hallelujah…your love makes me sing” Trey was singing at the top of his lungs with arms wide open.  His eyes were looking up and he twisted a bit from side to side.  It was one of the most amazing Godly moments I have witnessed.  One woman said, “I saw God today.”

15.  Later that afternoon when no one was watching I heard him singing that in the dining room.  He sang, “Hallelujah, hallelujah, hallelujah…you CAN’T make me sing.”  Yep, that’s my boy.

16.  I got to have a nice, not long, but much more than typical talk with Joe and Bella about Trey, his cancer, and them the other day.  They seem, seem, to be ok.

17.  On non-hospital days Rachel drops him off and then goes back to supervise recess.

18.  Instead of giving in to anxiety it is always good to play the what then game.  It is hard in this case…”If the HLA matched platelets are  rejected then…hopefully he will make his own.  If he just doesn’t make his own then…” we just don’t know what then.  What does happen (please don’t research this or give us your input…we’re hanging in there).  It’s just hard.

19.  This has been one of those hard things that cancer throws at you as you don’t see it coming (at all) and there aren’t really any answers in the short term.  All the while you have that gnawing fear of “Is this the beginning of…” or “Is this going to continue until…” blah blah blah.

20.  We are scheduled to go to Philly again in early October.  Since each one has a greater impact (collectively) on his body he will need to get a stem cell transplant after that visit.  He had his stem cells harvested years ago (for another treatment that he never quite got to) and they are on ice ready to be used.  Bonus for us I assume.

21.  We are going to see if it is ok at all to push that back just a bit at least to give his poor body a rest.

22.  After THAT treatment he will not go back for quite a while (I forget) to allow his body to recoup.

23.  His appetite has been fine but not crazy insatiable.

24.  He always wants to go out.  Go to the store, go to a restaurant,  go to a park, go go go.

25.  Check out my sister’s blog, To My Audience of One, and know that every prayer is appreciated and doing more than we could ever imagine.

I hope this helps you pray, stay informed, or give perspective to where things are.  We appreciate you all in many ways.  Thanks for being here with us.


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