I am so glad that Simon is hanging in there. I am going to pray very, very
hard for his recovery.
Snapfish.com is a good place to post pictures. That is where I posted mine.
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Subject: Simon got chemo today
Date: Thu, 13 Jan 2005 20:29:37 EST
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FILETIME=[9B3BB490:01C4F9D8]
I took Simon to the oncologist and the news was mixed. On the very good
side,
his bilirubin was down from over 9 to only 2.3! This is still almost three
times normal, but quite a drop, and enough of a drop to safely give him the
full dose of CCNU. Because it seems likely that the heavy doses of
steroids he
got last weekend (and your prayers!) killed off enough lymphoma to bring
the
bilirubin down and make him feel good (more on that later), he also got a
dex
shot with the CCNU.
The bad news is that his PCV was down to 11 on the machine reading and 9 on
the hand reading (the latter of which is supposed to be more accurate).
The
oncologist suggesting transfusing him again, but I decided not to because
it
only raised his PCV by one or two points in the past and because, probably
due to
the steroids (and your prayers!), he is feeling much better than when he
needed transfusions in the past. And I had promised him I would not leave
him
there. The oncologist agreed this was fine, that you transfuse the patient
and
not the number, and that as long as he is bright we can try to ride it out
or I
can bring him in for a transfusion later. We discussed Epogen again and
decided not to put him on it. The reason is this: Simon's anemia is
regenerative--
he is still making red blood cells-- but the problem is that the lymphoma
has
taken over so much of his bone marrow that he has little bone marrow left
to
make the red blood cells with and so makes many fewer. When the lymphoma
is
killed off, his bone marrow bounced back. When he responded to chemo
previously, he went from a PCV of 11 to one of 33 in two weeks. If we can
kill enough
lymphoma, with the chemo and/or steroids, his bone marrow should bounce
back
again on its own. If we can not kill enough lymphoma, the Epogen will not
save
him because the lymphoma will take over all of the bone marrow. And he
seems
so much better on fewer medicines that I really do not want to keep adding
things to his little body that do not have a high probability of helping
him
(granted, the CCNU does not have a high probability of helping, but if it
does it
will take care of the root problem which the Epogen would not).
The oncologist was rather surprised to be treating Simon again. When I
asked
him to give me a probability of the chances that CCNU will help Simon, he
said
"all bets are off with Simon. I'm not going to try to predict anything with
him anymore."
Simon is very far from out of the woods, and his PCV is obviously a big
worry. But I am going to try to treat him like a love bug, rather than a
number,
and just be glad he is feeling so good and happy while he is.
Thanks for all your prayers (and please keep them coming!),
Michelle
P.S. We took a bunch of pictures yesterday and today of simon looking
really
silly and cute, laying on his back for belly rubs and looking and Buddhas,
and
wanted to share them with you because you all have been so involved with
his
story. However, I tried a way of posting them for free on the web but it
did
not work (photobucket). If anyone knows of a different way I can do that
and
send you the link, I will.
