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I hope Tom will continue to do well.
Rob
----- Original Message -----
Sent: Monday, August 08, 2005 9:23
PM
Subject: [CML] Tom's at Day 95
Dear CML group members,
I haven't written much in
regards to Tom's transplant. He is now at day
95 and on the upswing. I am
not expecting to leave Minneapolis by day
100 (Aug. 13) but probably
shortly thereafter. Tom's hundredth day will
be exactly one year after he
was diagnosed with CML (Friday the 13th -
who could forget). Tom's
complications from the transplant - graft vs
host of the skin and liver
(both gone now), CMV (cytomegalovirus -
almost gone now), ganciclovir for
the CMV which knocked his white cell
count down to .5, prednisone induced
diabetes, and he still hasn't
finished all his homework. Good things that
happened with the
transplant - graft vs host disease means graft vs
leukemia effect, no
fevers since original discharge from the hospital (day
28), gaining
LOTS of medical/medicine knowledge, and I got to spend 95
days with my
son - priceless. Right now we are waiting for Tom's WBC
and platelets
to rebound now that he is on foscarnet for the CMV. The
counts have
slowly climbed. He stopped receiving growth factor shots to
boost his
counts so there has been a slight dip in the WBC (3.7) and
platelet
infusions almost every other day.
I am constantly reminded
how blessed I am that Tom has had a relatively
smooth journey so far.
University of Minnesota Children's Hospital
transplant unit is almost
always full. We have gotten to know many
families whose children have had
very rough journeys. To read more
about Tom's journey - go to:
http://www.caringbridge.org/wi/tomneddo
Thanks
for all your past support. It's been an important part of this
journey,
Barb Neddo,
Eagle River, WI
Mom to Tom, 16, dx CML
8/13/04
MUD BMT 05/05/05,
100 days coming up on 8/13/05
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