Sorry I'm a little late on this update, we had a pretty eventful Easter and we're all still trying to get back on our feet.  JT was scheduled to be in Cincinnati the Tuesday and Wednesday after Easter, but we had to cancel and ended up going the following week.

Here's the saga...During the wee hours of the night on Good Friday Justy woke up vomitting all over his bed.  We were up all night with him.  The following morning I ran my first ever half marathon as Brian stayed home and cared for poor dry heaving Justy.  As soon as I got home our pediatrician called to say Justy should go the the ER to be evaluated and get fluids.  He didn't cry a bit when he got his IV started and couldn't wait tto get home to tell JT that he was brave just like him.  After the fluids and anti-nausea medicine Justy perked right up and they sent us home.  The next morning we headed over to Brian's parent's house in Cook Forest (about 2 hours away) and had a delightful easter egg hunt, delicious meal and good R&R.  At about 5 pm I looked over at Brian and told him I didn't feel so well.  He looked back at me and told me he didn't feel well either.  I'll spare you the ugly details, but within a half hour we were both terribly ill with both D & V.  Thank the good Lord above that Larry and Cherry were there to care for our children (and us too).  Around 1:00am or so Larry broke the bad news to us that JT was now upstairs throwing up and having D too.  Ugh! (we're 2 hours from our hospital that knows JT) Larry (what a saint)had to drive Brian and JT to the Grove City hospital ER.  Brian was able to rally himself and make the trip, while I on the other hand, couldn't make it out of the bathroom.

Brian and JT both received fluids and were set to head home.  They took out Brian's IV and deaccessed JT's port, and then JT promptly started throwing up again.  They decided it was best to admit JT to the ICU so they had to reaccess his port again.  JT was so good about it, especially since he didn't have any numbing cream on either time.  The next day Cherry and Justy drove me back to Grove City and dropped me right off at the ER so I could get some fluids too.  At this point all the nurses knew our entire family has been in for fluids because of the flu.  When they asked me for my insurance card I said, "Just put in on our tab."  I was discharged late that night and got a good nights rest at home by myself.   The next afternoon JT was discharged despite the fact that he wasn't tolerating his feeds yet and still throwing up a bit.  The next few days are a blur to me, but we all made it through somehow.  Brian, Justy and I are all doing fine now, but JT still is struggling with tolerating his bolus feeds and usually still vomits once a night.  He's so amazing about it all.  This past Sunday night he had an episode where he was on the toilet and then also had to throw up.  Just as matter of fact he told me to go get a bowl.  Then as he was sitting there struggling through it all I said, "I just don't get  it JT.  You did fine all day with your feeds and now this happens. "  Then he said, "I don't get it either, but God does." 

I was afraid that when we went to Cincy last week that he may have lost too much weight to get his photo treatments, but to my amazement he had only lost a little more than 2 pounds.  So they started his procedure again with the new machine but within 5 minutes I heard the trainer tell our nurse to stop the machine.  Ugh!  There was some sort of blood leak in the machine so they had to abort the procedure.  Thankfully they still have the old machine and JT was able to recieve two days of his photopheresis as usual.

We also had a chance to see Dr. Filipovich.  She was so pleased with JT's appearance and the results of his immune studies that she decided not to switch him to that new medicine, but just start the weaning of his steroids.  It will be a long road to gradually decrease the dose and eventually get off the steroids completely, but this is the hope.  I asked Dr. F. if the tests reflect that JT's GVHD is in remission (with a chance to come back) or if it has burned itself out and won't come back.  To which she replied, "That's the million dollar question."  So we wait and watch and decrease the steroids slowly and hope and pray that the chronic GVHD is gone for good.  Thanks so much for checking in on us.