Yearly Archives: 2016

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. 

Starting with a delay

Ray was sent to interventional radiology first thing this morning only to be sent back to his room. Apparently a scheduling conflict for the anesthesiologist now has him on a 2 hour delay.

Getting ready for apheresis

Ray was admitted today at NIH to prepare for apheresis. Apheresis is the first step in preparing for gene therapy. During apheresis his own stem cells are collected and will later be treated with a vector carrying a segment of DNA which is designed to correct his immune deficiency. Apheresis […]


Ray had to be at NIH bright and early this morning for pre-op labs and anesthesia consultation. While there he got a chest X-Ray and EKG out of the way as well. It was definitely a quiet day at NIH today as we got in and out of each department […]

So it begins

November 16th we were at NIH for additional blood work and for Ray to sign the consent for apheresis in order to prepare for the XSCID gene therapy protocol. However, this is not the first time Ray has been to NIH for apheresis. He was there in 2001 when both […]