Thursday, March 11, 2010


Gary is doing really good.  His energy is that of a normal almost three year old.  He has been playing hard.  The only thing I noticed were stairs are hard for him again.  He may be starting to run out of steroid juice.  We go in and fill our tank on the 19th.  It is our overnight stay for Cytoxan.  Everything is so gradual.  Ever so slowly starts to slow down, so its barely noticeable.  That is wear it really hit us.  I didn't notice before because it is just small things.   The question that is asked, "does he ever stop, slow down, and rest?" .  My Dad use to ask us that when McGuire was like that.  McGuire's energy was endless.  He would even jump in front of the TV to interact with the action that was going on.  When Gary was pulsed a couple weeks ago, he was running and jumping.  For a moment I thought he might run right up onto the wall.  I love it.  I hate it in the same breath.  He needs steroids to have energy to be a normal kid.  No need to dwell.  But acknowledge it in my thoughts.  I have also noticed a change in his gestures when he swallows food.  We are no stranger to what is called dysphagia.   Difficulty swallowing.  No choking though like before.  Just something only I would notice because I am his Mom.  So here is what I suspect:  If this was a "flair" or his disease trying to kick it up a notch, it started the way it did when he was first diagnosed.  Started with a rash or in this case an ulceration and signs of deterioration of the skin.  When he was first diagnosed, the muscle weakness didn't hit until then end of May, so weeks later.  Despite heavy doses of everything, he still had the muscle weakness hit and hit hard.  So the small difficulty he is having swallowing and stepping up and down steps may so right along how it works.

Prayer Request:
Mason is in the hospital with an infection of some kind.  He is feeling better.  Praying for the Smedleys.


  1. I am so glad that Gary has his energy back. I understand that feeling of they are running out of gas and it is time to refill the tank with steroids. I remember that exact thing with Kya. I could tell because I was the mom and I noticed the little things just like you. We will be praying that he continues to get better and better and that he can go farther between treatments! Hang in there mama tiger!

  2. Ericka,
    Glad to hear Gary is getting his energy back! I just got pulsed with steroids myself (having a MAJOR FLARE) and I feel like super woman sooo I know what ya mean about running everywhere and then feeling like you are running out of gas and need a steroid fill! Good luck on your overnight stay! Gary's symptoms sounds like they show up just like mine do, I get skin flare, then tongue ulcers, than muscle weakness....I haven't had problems swallowing yet!

    I will keep ya'll in my prayers as always! Hang in there!

    Oh Kelly's Korner is hosting show your fav charity today and I uploade Cure JM and I linked your blog to it....I have already had a few people say they are gonna donate YAY!!

    Summer :0)