Dear Family & Friends,

We’re home — very grateful to be here and beginning slowly to recover our strength.  Both of us are completely and utterly exhausted as well as traumatized by the whole experience which was much, much harder the second time around.

On the (really really) good news front, Barry’s bone marrow biopsy of August 16 showed No Evidence of Disease!  When we met with David Miklos on August 20, he was thrilled at the results.  While reading the narrative report from the lab, he kept saying things like “the cellularity is great” and “this marker is great” and he finally said the following two phrases:

“This is as good as it gets” and “Go live your life.”  He also said we didn’t need to see him for 3 weeks and the less we saw doctors the better.

On the bad news front, we finally got the chimerism (engraftment) results late last night and this is what David wrote: Read the rest of this entry »

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 »