February 18

We’re in Cincinnati for photopheresis treatments and weekly infusions.  Great news is that they’ve dropped two of the infusions, cutting 2 ½ hours of infusion time out.  Yeah! 

We drove to Cincy Monday after Brian got home from school and were at the hospital at 7:30am Tuesday morning.  Jacob had to receive a blood transfusion and then got his first photopheresis treatment.  We usually do three rounds of gathering cells, but his port was occluding too much so we were only able to gather 2 rounds and then treat.  We are speculating that the blood transfusion tends to clot off the port a little.  They put a special medicine in his port overnight that helps it to not clot.  Even though our infusion times were cut back, we were still in the hospital for 12 hours.  It’s such a long day for Jacob to sit in bed.  He really does a great job of entertaining himself.  Each time we visit it seems he’s in to something a little different.  This week it’s plastic stacking cups.  He got 2 sets on the way down and then we went after we left the hospital Tuesday night to look for another set.  When we were checking out he told the clerk that we have a baby at home.  I had told him that these were baby toys. J

I have to say though, we are at the hospital right now receiving his second photopheresis treatment and I’ve been asking him adding and subtracting questions using the different cup sets and he’s impressing the heck out of me.  His port is working well so far.  After photo we will only have one half hour infusion, a visit from Dr. Filipovich and then we’ll be heading home. 

February 20

So we made it home Wednesday night around 7:30 pm.  It was wonderful to be pulling in at such a reasonable hour.  It was still dark and JT just assumed that we’d have to be quiet when we went in because daddy and cubby would be sleeping.  He could hardly believe we got home so much earlier too.

Dr. Filipovich saw JT on Wednesday and thought his skin looked great.  She’s been trying to decide which to cut back on first, the oral steroids, the IV steroids or the photopheresis treatments.  Well she told me she thinks the photo treatments are to credit for how good he is looking and that she’d rather start with cutting back the oral steroids and then move on to reducing the IV steroid dose.  I was thrilled to hear this as Brian and I feel the same way.  We’d much rather get him off the steroids and keep going to Cincy every other week for the photo.  We’re still on target to start the boys back to preschool in March and Dr. Filipovich also gave us the green light to join the pool club at the end of our street this summer.  Everyone in Cincy is raving about how good JT’s skin looks and feels.  It was a fun meeting with Dr. Filipovich to be talking about such positive things.  The only other issue that came up is something new that Jacob is doing with his eyes – a funny blinking type thing.  Dr. Filipovich wants us to see an ophthalmologist is Cincy just to rule out GVH of the eyes.  Hopefully we’ll have that appt. next time we visit.  She didn’t seem overly concerned at all – just being thorough I think.

So we made it through Wednesday and Thursday night, but Friday at around 1:30am that pesky fever showed up again.  Thankfully Brian heard JT coughing and woke up to give him some water and then felt his head – he was burning up.  Brian woke me up and I have to admit it was not one of my shining moments.  I really, really, really didn’t want to get up out of bed and go to the ER.  Brian was great.  He made me coffee, helped pack the bags and the car and got JT ready to go – all while I was grumbling to myself.  Jacob really, really, really didn’t want to go either which makes it hard too.  He kept asking God to not make him have to go to the hospital again.  Once we got into the ER his one question for anyone who walked in the room was, “When can I get out of here?”  Dr. Glenn the ER doc and I were very hopeful that we’d go through the routine and then be heading back home in a few hours, but Jacob’s white blood cell count came back elevated so that bought us night in the ICU for observation and two doses of antibiotics.  Thankfully I’m writing this from home now and we were released around 4pm today.  Jacob is acting fine and we really think the elevated WBC count was due to the IV steroids he received on Wednesday.

We are especially grateful to our good friend Jack Warner for cheerfully receiving an early morning call from Brian asking him to watch Justice all day.  He’s been a godsend to us and the boys.  We’re also really thankful for the kind folks at the Grove City Medical Center that take such good care of JT every time we go there. 

So the fever mystery continues…we had had a nice stretch going there.  We’re hoping for another.  Thanks for checking in on us.  The many prayers said for JT and our family continue to carry us through this never dull journey.