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.

What the doctors think has happened is either because of the CMV (Cytomegalovirus), a common infection for immune-compromised people which he contracted soon after the first chimerism test, or because of the Gancyclovir which treats the CMV, the graft has been impacted.  Remember that Barry had the terrible zoster (shingles) infection and Dr. Miklos has always thought that might have affected the first transplant.  The Gancyclovir depresses the white blood count (and the marrow) so that might be another factor in the current graft loss.

Last week’s CMV level went way down.  (They test every Monday with results on Wednesday or Thursday.)  Everyone’s very happy about that.  They’re doing several things to attack this problem and hopefully the engraftment will go back up.  Apparently this can happen.

1)  Barry’s been switched from Gancyclovir to Foscarnet, another anti-viral which does not depress the white blood count, but is really hard on the kidneys.

2)  He’s getting IVIG infusions (immunoglobulin which fights infection) once a week.

3)  If his white blood count does not recover on its own, he will get shots of Neupogen.

Today is Day 68 and the next chimerism test will be on Day 90, with results about a week later.  Waiting, waiting, waiting.  Breathing a lot.

Dr. Benjamin, the attending in the ITA this month, says “we’re threading a needle.”  Obviously there are no guarantees but there’s a plan based on a set of hypotheses.  So we are hoping for the best.

Our life here in Palo Alto has improved.  The stir-crazy, fresh-air deprived days are hopefully over.  Since Barry is feeling so much better and is also stronger, we are going for long walks and having outdoor visits from family and friends.  They lift our spirits.  We also sit by the pool and read.  We’ve both been reading a lot and watching many movies.  I’m finally able to work out regularly with my wonderful trainer, Angela.  Visits from our children and grandchildren, and photos/videos sent regularly and posted to their blogs bring us great joy.

For those of you who are looking for Barry’s postings at www.agauchepress.com, do not feel deprived.  While he has not been writing too much about the transplant experience, he has been finishing the final edits on his book, “Flight of the Sorceress”, which will be published as an e-book, perhaps as early as September.  We’ll keep you posted.

As always, your emails, cards, phone calls and comments on the Web site are welcome and incredibly meaningful to us.

With much love and quite a bit of hope,

Bonnie

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