----- Original Message -----
Sent: Friday, July 22, 2005 6:05 PM
Subject: Re: [CML] New to support
group
Hi Mary,
I am so sorry to hear your son has CML. I am 27 years old, so I
understand how difficult in this age it is. As somebody else, also I wonder
what made your son to decide to have a BMT. I was considering this option
until I learned that my sister is a half match. So I am taking pills. My
parents are in Slovakia and it is not easy for them to get here. I hope they
will get visa soon and will be able to visit me any time they want to or I
need them.
It is so good to hear how much you know about CML. I do not even know how
much info my parents have. I am sure in Slovakia are not as much info as here
and also I asked them to have a consultation with a doctor, so they know what
I am going through. But I am not sure if they will be able to answer them
since our doctors do not even use Gleevec yet. It is hard...
I wish Matthew will get better soon. I have no idea what is GVHD, except
that it is related to the BMT. I do not even watch my counts... I believe in
God and as soon as my doctor doesn't call I thank Him for everything. None of
us know what is in front of us, so the best thing is to be positive. Easy to
say, I know, but form me with God everything is possible.
I added Mathew to my prayer list and today I am going to the bible study,
so I will share with people over there a little bit about Matt, so they can
pray. I hope you do not mind.
I am sure that he is young, so his body will fight it ... soon. I
found that with this disease we just need to be very patient.
Livia
Mary Ann Quarcini
<[EMAIL PROTECTED]> wrote:
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
DeleteReplyForwardMove...
Previous | Next | Back to Messages Save
Message Text
__________________________________________________
Do You
Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com
New! Sign up for local CML support group meetings in your local community at http://cml.meetup.com
Apply for Commercial Real Estate loans online and submit your deal to dozens of hungry lenders in just minutes. Loan programs for all types of business and commercial real estate. Apply anytime at http://realestatezoo.com
CML (Chronic Myelogenous Leukemia Support List)
---------------------------------
Part Of CMLHope.Com
An International Community Of CML Patients
For more information: http://cmlhope.com
Post Message: [email protected]
Subscribe: [EMAIL PROTECTED]
Unsubscribe: [EMAIL PROTECTED]
Change To No Mail/Web: [EMAIL PROTECTED]
Change To Digest: [EMAIL PROTECTED]
Change To Email: [EMAIL PROTECTED]
List Help: [EMAIL PROTECTED]
CML Group Web Site http://groups.yahoo.com/group/CML
YAHOO! GROUPS LINKS
