Wednesday, July 11, 2012

Day +95

Sadly, Josh and Ethan had to go home yesterday.  It's just the two of us again.  Having Ethan here did wonders for Jacob.  It helped him feel like a normal kid again, laughing, playing, bossing his brother around, and even walking a little.  Who would've thought how therapeutic a big brother could be.  I'm already missing my spunky Ethan, too.  We'd keep him in Seattle if we had another adult up here to help me.

We are still in the hospital.  The good news first: Jacob finished with his inhaled ribaviron treatment on Sunday.  On Monday, we found out that the adenovirus dropped from 2.2 million to 450,000.  It feels good to finally be on top of that.  I don't know if I mentioned earlier, but his c diff infection came back negative last week, which was also nice.  His tummy seems settled and he is eating wonderfully.  He is completely off the pumps, except for night time hydration.  If that were the end of the story, we'd probably be getting discharged soon, but...

Now for the bad news.  Jacob has another virus called Epstein Barr Virus, or EBV, coming back positive.  So far, he doesn't have any symptoms.  This is another virus that can reactivate due to a low T cell count and it was most likely passed on to him from his donor.  Last Monday it was 300, Friday it was 800, then this Monday it was 2800.  They haven't done anything yet, hoping that his body can keep it in check, but I'm not expecting much based on his history.  If Thursday's result comes back at 5800 or higher, they will have to treat with Rituxan.  EPV is found in the B cells and Rituxan will wipe out all his B cells for 6 to 9 months, giving his T cells more time to grow and mature.  Of course there are more risks involved with not having any B cells.  For now, they are keeping him on a low level of immunosuppression, hoping to keep the gvhd in check, while at the same time, giving his T cells enough of a chance to do their job.  It's a delicate balancing act that may or may not work.

We were supposed to be moving back home next week with Day +100 right around the corner, but it just wasn't meant to be.  I wonder if any patients ever actually get to go home on their 100 day mark.

1 comment:

jp said...

Dear Kylene,
ALthough I haven't posted much know that my prayers have said for your little Jacob, and the rest of your family. I loved seeing the pictures of sweet Ethan and his sweet little brother. I also wanted you to know that I will be in the Seattle area in mid-August for a couple of weeks and if you need a break or some tea or lunch or ??? please let me know. Also I wanted you to know that my daughter Abby goes to school in Seattle and if you need anything when I'm not there she might be able to help. Please don't be shy, we really would like to help.
Praying for you all. Joyce Pagel