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. Jude and were not happy with these results. You may remember that this batch of vectors has been in question for a while now. It’s why Ray’s Gene Therapy process hadn’t begun before now. The docs have been working with the vectors to determine if they are actually doing everything they need them to do. Through 3 tests, one of which used a small sample of Ray’s own cells, they determined that with some adjustments to the process, that these vectors did indeed work.
Then they ran one more test….
This latest test didn’t turn out as well. So of course, now they are concerned because they don’t want to:
1. waste the stem cells collected from Ray because we likely won’t be able to get enough more and
2. give Ray the necessary doses of chemotherapy only to not give him corrected cells.
So, there’s another test in process, the results of which will not be known until May 31st. That’s the day they wanted to admit Ray and start getting everything ready to give him chemo and then his Gene Therapy corrected cells. Initially, the plan was to go to NIH that day and then play it all based on what happened with the results; either stay and proceed, or scrap the process if the results were not within the necessary range.
Yesterday, I got a call from the doc and learned that everyone would rather see the results before having Ray admitted. Apparently, the people in the Cell Processing Lab were not happy with the tight timeline that would result if we went with the May 31st date. The days involving the Cell Processing Lab are critical and the whole schedule revolves around their availability to begin with.
So, the next day that Cell Processing can give us is in the middle of July. That’s if the test results that come back on May 31st are good. If they are not…..
Meanwhile, Ray’s nutritional status is completely based on getting TPN (IV nutrition) because his GI tract just won’t behave. That means his IV port is critical. He’s upset about the delay. There have been so many. He’s certainly nervous over the whole process, but these delays only create more anxiety.
I’m trying to breath. I’m trying to wrap my head around everything that’s going on for our family right now. I’m trying to find the “up side” in all of this. Yes, I’m a control freak. I’ve had to be one for the last 23 years, and right now there’s just too much I cannot control. I’m not good at riding out the waves. I keep expecting the next one to break over my head.