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 […]
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 […]
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. […]
Ray’s bone marrow aspirate went well and now he’s back home. He’ll be a bit sore for a few days, but hopefully no other problems. We get to sleep in our own beds tonight! That’s a really good thing as I did not get much sleep last night. Nights like […]
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 […]
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 […]
