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 ...

 Hilton Head was absolutely wonderful – good for all of our souls.  The boys made quite a commotion the first time they went out to the beach and saw the ocean.  Everyone in their near vicinity got to share in the excitement.  Justy was fearless and ran right into the water.  Jacob was a bit more reserved about the ocean but warmed up to it as a little time passed.

Short update:  Tuesday's surgery went well and JT now has a "Mickey button" instead of a G-tube.  It's much less obtrusive and he seems to like it.  It's a little loose, so if it doesn't tighten up as it heals they may replace it with the next size smaller next week.  His infusions also went well and everything is still a go to start photopheresis next Wednesday.  We leave this afternoon for South Carolina - the boys are really stoked and we look forward to seeing their faces when they first see the beach.  JT has a wardrobe of high-tech sun protection gear he's anxious to try out.  I'm aware that this is the furthest away we've been since he was born:  the nearest major hospital to where we'll be staying is 2 1/2 hours away.  We have a letter of introduction but please pray that we won't have to use it.  It would be gr ...

Sorry I'm not posting until now. 

We really didn't get any new information at our visit on Wednesday.  JT's infusions went well.  Dr. Filipovich came in and thought his skin looked markedly better than two weeks ago when she last saw him.  She also offered her sincere apologies for the miscommunication/s surrounding the photopherisis therapy.  She promised to get to the bottom of it all by next week and have a solid time frame of when we can expect to begin.

Thank you all for your continued support. 

Just wanted to post to let everyone know that I won't have more information today.  Dr. Filipovich won't be back in the country until Wednesday now.  JT and I will be going to Cincy on Wednesday for his regular infusions so we'll just meet with her then.  I'll try to post again Wednesday evening when we get back to Pennsylvania.  If I'm too exhausted, first thing Thursday morning.

Thank you all for sharing this amazing journey with us.

Hi everyone-it's been awhile since you've heard from me.  I'm taking over the blog entries while JT and I are in Cincinnati.  The funny thing is, we're not actually in Cincinnati as was the plan. 

Here's the skinny...

On Tuesday, three hours before JT and I were set to leave for Cincinnati for the two weeks of light therapy, I got a phone call from one of the Bone Marrow Attending doctors telling me that they were not ready for us for the therapy.  I couldn't believe my ears.  JT and I were all packed, our lodging for Cincinnati was all set and kind, willing babysitters for Justice were all in place.  The doctor said they were unsure as to when they would be ready, but to hang tight and wait for the Nurse Practitioner to call.  After the initial shock wore off I had to get busy making several phone calls, changing all those nicely made plans.

We still left that day at 3: ...