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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