Yearly Archives: 2017


In memory of Donald Ballard

This is probably the most difficult post I’ve ever had to write. Many of my friends have already heard this, but there will be a few who have not. Don fought a courageous battle but, sadly, he succumbed to pancreatic cancer on November 17, 2017. Ray and I would like […]


Sigh… Further Delays

I’ve stared at this blank page several times, trying to figure out how to write this post and put a positive spin on it. I just have not yet found the positive in it. Bottom line: Gene Therapy for Ray is delayed further. The doctors/researchers have tested and retested the […]


SCREEEEEEEEEEEEECCCCHHHHH!!!!

That’s the sound of brakes, coming from Bethesda, MD. Yep, that is what another delay sounds like. The first indications came over almost 2 weeks ago. I got a call from the doc at NIH telling me that they’d run another test on this latest batch of vectors from St. […]


At NIH

After a little schedule adjustment Ray and I are finally at NIH tonight for his bone marrow aspirate, scheduled for tomorrow. Hopefully it will occur early enough in the day for everyone to check out Ray and approved him to leave by tomorrow afternoon/evening. Today was one of those days […]


First step

Next week Ray has to be at NIH for a couple of days for a bone marrow aspirate. I believe this is to provide all the information on the current or baseline ability of his bone marrow including cell production lines and chimerism. Wednesday will be all the typical pre-op […]


Ready, Set…

Waiting has been hard. Last September it seemed everything needed to start Gene Therapy for Ray would occur in record speed. I expected to see everything gear up beginning in January, but nothing happened. NIH had to wait for new vectors from St ┬áJude and then test them to make […]


Ray’s IV port has failed

Ray has been getting TPN, IV nutrition, 4 nights per week. He was only receiving TPN once per week but was losing weight, so back in August last year during an admission to NIH his IV nutrition was increased. During that admission his enteral formula was changed back to Peptamen. […]