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GVHD can be difficult. If they let him come that sounds like he is showing
some improvement. I hope he will continue to improve.
Rob
----- Original Message -----
Sent: Thursday, July 21, 2005 5:39
PM
Subject: [CML] New to support group
My son Matthew, who is 22 years old was diagnosed with CML
last
July. He had a bone marrow transplant at The Cleveland Clinic
January 11th, 2005. The donor was not related, a mis-match, but very
close to his DNA screenings. He too has had a very rough road. My
husband & I are really trying to stay positive for him. His doctor
tells him that the GVHD (he has GVHD of the skin) can continue with
flareups for years. He has been admitted to the hospital three times
since he had been released in early February from his transplant.
The
first two times were extreme flareups of the GVHD of his skin,
which he
was back in the bone marrow transplant ward for about two
weeks both
times. The last time that he was in (most recent) was for
6 weeks. He went
in with a fever and they found staph infection in
his blood, all through
the body. They took his 'hickman catheter'
out of the chest almost
immediatley as it was oozing & infected.
They put small IV lines in
his hands, but had to keep changing them
as the staph infection wasn't
clearing up. For 4 weeks they did
this, changing the IV catheter lines and
using every anti-biotic
known to man they said, to get that staph
infection under control.
They put two different pheriphal lines in his
neck, which is very
uncomfortable, but finally the blood cultures came
back negative for
the staph. About week 4 in the hospital, they did a CT
scan on his
lungs and found 'nodes' were sprouting up. The infectious
disease
doctor said that they appeared to be 'fungal' and listed him in
critical condition. They said that the fungal infection could take
over & progress very rapidly into fungal pneumonia. It did, but the
anti-fungal medications put it at bay. They let him come home, even
with low grade fevers, as the newest CT scans did not show the
fungal
nodes increasing, but staying the same. He has gone back for
re-checks
every two days and his counts seem to be coming up again.
That is good
news. The high dosage of steroids has brought on
diabetes and now the
anti-fungal IV's that he has to give himself at
home every two days causes
alot of stress on his liver & kidneys. We
just take one day at a time
and pray for a miracle. I know that
Matthew is God's child before he is
mine and whatever is in God's
plan for him we will accept. He is my
youngest son out of three boys
and it's quite hard to see him go through
this. Our lives have
changed, in a more compassionate way to all those who
suffer from
terminal or catrasophic illness'. Any pointers you can shed to
us
would be great. Thanks for sharing with your website. I love reading
it all!
Mary Ann OHIO
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