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 […]
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 […]
He declined, but that’s OK. He got the line to work! I wouldn’t have believed it possible. After dealing with lines for 20+ years, I thought I’d seen it all when it came to what they would try with a clogged line. The Physician’s Assistant from Interventional Radiology came in […]
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. […]
We don’t yet know when NIH will be ready to start the next step for Gene Therapy for Ray. We hope to hear a plan soon. The waiting is hard. We have trouble deciding what we can plan to do and what we cannot. I know Ray is really anxious […]
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 […]
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 […]
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 […]
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.
