Great news out of Cincinnati!!!!! 

Every six months or so the docs order immune functioning studies to see how JT’s immune system is coming along.  During our last visit to Cincy we found out from our nurse practitioner that JT’s studies looked almost NORMAL!  We did not get to see Dr. Filipovich that day, but received word yesterday from her that we could stop giving JT his IGG subcutaneous infusions (antibodies from 40,000 different people).  Hallelujah!  What this means is that JT is making his own IGG.  They will continue to follow his IGG counts to make sure they stay where they need to be, but we are just thrilled about this.  Especially since this is the infusion that JT likes the least.  When we told JT that we didn’t have to do “shrimps” (this is what we call it) anymore, he threw his head back on the couch and said, “Praise God, Praise God!”  As I understand it, this also reflects that the chronic GVHD is under control at the time, because it’s one of the things that was keeping JT from making his own proper levels of IGG, IGA and IGM.

Furthermore, Dr. Filipovich wants to switch JT from the high dose steroids he is on to a new drug they are using for chronic GVHD.  We don’t know much about this as we learned about this upcoming change from an e-mail, but to say the least we are ECSTATIC!  We have for so long been hoping and praying to get JT off of the steroids.  We should find out more about this new medicine next week from Dr. Filipovich.

The other wonderful thing that happened last visit to Cincy was that JT was treated one day with the long awaited NEW photopheresis machine.  It was an exciting day as everyone was stopping in to see the new machine and wish us well.  But it was also a stressful day for as with most new things, there were bumps in the road and definitely a huge learning curve.  Julie, our Hoxworth nurse, did a great job as she was getting trained on how to use this new machine.  It is so complicated – WOW!  Again, the benefits of this new machine are that it takes less blood out of JT’s body which translates into JT not needing blood transfusions every other week like he was getting.  Also, the new technology makes this machine more efficient, thus treating twice as many white blood cells as the old machine did in the same amount of time.  We certainly had a few hiccups with JT’s line and occlusions, but the team came up with some good things to try next time to perhaps avoid those issues.  As always, JT was a champ.  We all continue to marvel at how much photopheresis therapy has helped to heal his skin.

We head back to Cincy this Monday after Easter.  We’re hoping to see Dr. Filipovich and learn more about the changes ahead.  Thanks for following us on this amazing journey.