News & History

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  Jude 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. […]

Still at NIH

We were hoping Ray would be discharged today, but Ray had to be Ray and keep everyone guessing. The pre meds needed for apheresis bothered his very sensitive GI system. I thought that he’d bounce back a little faster than he’s doing, but he didn’t tolerate his g-tube feeds very […]

The After Apheresis Update

We assumed the apheresis process would take 4 to 5 hours, maybe a little more. After the kink in the line was fixed it wasn’t possible to go as fast as the technicians would’ve preferred. The line pressures wouldn’t stay in the right range, so they had to go more […]

Kinked Line

Geez Ray, 4 Doctors 3 nurses and a mom. You sure know how to gather a crowd when complications happen! New IV catheter kinked in the middle of the stem cell collection.  Rushing to repair it in a short time window before the blood clots off in the lines and […]

In Apheresis

He didn’t get to apheresis until after 2pm and it was after 3pm before the process could begin. The staff here is being great and several have volunteered to stay late this evening to get the most benefit possible from today’s collection of cells.