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It's Jodi again.  I tried to get the blog up while we were in Cincy, but it just didn't happen.  So...here I am a little late again. 

Last week was a good one in Cincy.  Jacob did awesome with his port access and was a pleasant travel companion.  Dr. Filipovich dropped his prednisone (steriod) down from 3ml to 2ml daily.  I think we'll be at this dose for awhile now.  The next step would be to move it to 2ml every other day, but I think we're going to try first to cut back the photopherisis treatments from three times a week to two times a week.  Last time they cut back the steriod and the photo treatments at the same time it didn't work.  We sort of asked if we could try to cut the photo treatments back just due to the logistics of needing a babysitter for Justice for 4 days now that Brian will be going back to work in a couple of weeks.  Cutting  the phot ...

Hi it's Jodi again with a really late blog entry.  If I don't get the blog updated while we're in Cincy, it's almost impossible to do once we get home.  Sorry. 

Anyway...good news is that Dr. Filipovich decreased Jacobs oral steriods.  He's now on 3ml of prednisone daily and also receives a large IV dose once a week.  The rest of his labs looked good.  It turns out that the immune study labs they drew last week won't be accurate due to the time they drew them (following a certain infusion it falsely elivates things).  So they redrew the blood and we hope to have some info next week and more info the following week.  I asked Dr. F if there was any hope that Jacob's immune studies would come back with numbers they'd be comfortable sending him to preschool with and she smiled and said, "there's always hope."  We'll see.

We had an eventful week in Cincy...our regular ...

Sorry that we haven't updated for the last two weeks.  When everything is going well and JT is improving and we're all at home together, it's easy to let the blog slide. 

As usual, there's some good news and some of the other kind as well.  During these last weeks, JT was in the hospital 2 days / week for photopheresis and his other infusions.  For instance, yesterday he and I left GC around 6:00 a.m,, arrived here at noon, and spent the day in hospital room 93  before heading to the hotel.  This morning we were back here at 7:45 a.m. and we'll be lucky to leave by 7:00 p.m. before starting the long drive home.  The schedule sounds brutal, but it's really been wonderful in the big picture:  our family has been together 5 days / week and we've only had one hotel stay a week to contend with. 

All that changed yes ...

Jodi here.  Sorry for the delay in my weekly posting.  It was a non-stop week in Cincy last week and then when JT and I got home for the weekend the time just flew.  Brian and JT left for Cincy this morning.

Last week went very smoothly.  JT continues to be so brave and strong when getting his port accessed.  The biggest news in this arena is that we are going to move JT's normal infusions to the same day as one of his photopheresis treatment days.  This means only three needle sticks a week instead of four.  It will make for a very long day with photo treatments and then 3 hours of his regular infusions, but it's worth it.  His chest around his port is tender and bruised from so much use.  One less needle stick a week is helpful.  And better yet, when the photopheresis treatments decrease to only twice a week, this will mean only two needle sticks and only two full days in Cincy.&am ...