Dear Family and Friends,

Yesterday we got confirmation that we can move back home the weekend of August 21/22, just a few days shy of 100 days post-transplant.  We’d been asking about this for a while but they didn’t want to give us the OK until Barry’s CMV was undetectable for two weeks, which it now is, and his counts (white blood and platelets) started recovering, which they have.

Last week Dr. Miklos stopped by when we were in the ITA (Infusion Treatment Area). Read the rest of this entry »

Dear Family & Friends,

Today is exactly five years from the date of Barry’s diagnosis of CLL (Chronic Lymphocytic Leukemia).  The good news is that he’s still here, feeling good and looking good.  The bad news is that we’re still dealing with this shit.

Last Monday we got the results of the second chimerism (engraftment) test and the engraftment had gone down.  Needless to say, we were very upset, as were the docs, especially since Barry lost the first graft which led to a nastier and more aggressive cancer. Read the rest of this entry »

Dear Family & Friends,

We received terrific news on Friday.  Barry is fully engrafted, meaning his (angel) donor’s stem cells have taken over and he can now  begin to recover.   This is a milestone that he never reached on his first transplant and it is the reason he was given a tougher pre-transplant regimen this time.  David Miklos, who came up to the ITA to celebrate with us within 3 minutes of getting the news said that maybe the fevers he was having were engraftment and not infection.  We’ll never know.  There is so much of this that is a mystery to us, and unfortunately, still a mystery to the doctors as well.

So while this is wonderful news, there are many obstacles ahead of us. Read the rest of this entry »

Dear Family and Friends,

Barry and I got home on Tuesday after spending 9 days in virtual isolation in the hospital. He had fevers, headaches, chills, sweats, intestinal problems, etc., not to mention the anxiety and depression. While we may never exactly know what the diagnosis was/is, he’s much better. The theory we like the best, Read the rest of this entry »

Dear Family & Friends,

Yesterday Barry received the previously-frozen cells from his donor via infusion.  It all went very smoothly, although it was a very weird experience for both of us.  The cells had been frozen in five separate bags inside flat metal disks.  We had been under the impression that they had been in a freezer, but we were told that they had been packed in something much stronger, a liquid gas, to a temperature of -175 degrees.  The BMT Tech wheeled in a large cart with two coolers and a warm bath on top.  One bag had been defrosted and it had an expiration time of 4 hours post-defrost.  One by one, the other bags were put in the warm bath to defrost and then infused into Barry.  The four other bags had expiration times of 30 minutes.  It was like a production line, with the BMT Tech, the physician assistant and the nurse, all checking name, date of birth, medical record number, number on bag, donor number, etc., etc., many many times.  They did not make any mistakes and we felt very confident.  The whole transplant took about 35 minutes.

And the good news is that Barry tolerated it very well.  Read the rest of this entry »