Conference turris::womannotes-v3

    Because of its non-controversially humanitarian nature, this note is
    not in violation of the policy against solicitation.
    
    						=maggie

    FACTS TO BE AWARE OF FOR THOSE WHO WISH TO HELP:
    
    1) ANY HEALTHY ADULT 18-55 MAY DONATE. 
    
    2) "PHERESIS" IS A TERM WHICH MEANS DONATING A CERTAIN PART OF YOUR
       BLOOD THAT IS VERY IMPORTANT FOR BONE MARROW RECIPIENTS...PLATELETS.
       And platelets are the clotting factor of your blood.
    
    3) DONOR INFORMATION MAY BE OBTAINED BY CALLING #1-800-258-0025
       extension # 2075. Speak with Deborah Katcher Buckley and she'll
       send you information and direct you from this point. 
    
    4) IT WILL *NOT* COST YOU ANYTHING TO BE TESTED, AS LONG AS YOU'RE
       WILLING TO DONATE YOUR PLATELETS. If you become a bone marrow
       donor, that also will *not* cost you anything---the recipient's
       health insurance covers the donor. 
    
    5) YOU ARE *NOT* OBLIGED TO DONATE IF YOU ARE CONTACTED. 
                                                            
    6) IT COSTS ABOUT $1,100.00 PER PLATELET TRANSFUSION IN THE PLATELETS
       ARE PURCHASED vs. DONATED ON BEHALF OF THE PERSON. And platelets
       are not matched specifically by blood type, so just go out and
       donate on her behalf and she will receive "credit" with the RED
       CROSS for anyone who goes out and donates on her behalf...EVEN
       IF YOUR PLATELETS DO *NOT* MATCH HERS. It will help defray the
       tremendous costs they are now suffering through.
  
      
    And one final thing to remember...
    
      Pat's chances of getting a donor are 1 in 20,000. Less than 20%
      of patients survive without a bone marrow transplant. Her chances
      of survival *after* a transplant could increase to 70%. 

    Could you PLEASE post her blood type so we can at least get a ballpark
    idea of whether or not we could match for a marrow transplant.
    
    I am aware, after reading the postings in V2 that blood type is
    immaterial if you are making a platelet donation, but it would be
    important for the marrow transplant aspect.
    
    Thanks
    
    -Jody
    

    Also, what about those of us out-of-state who want to help?  The
    Red Cross in Salt Lake City seemed kind of fuzzy when I offered
    to donate.
    
    Barb

     RE:-.4
    
     Any and all out-of-state persons willing to help out, I strongly
     urge you to call Deborah Katcher Buckley at #1-800-258-0025 at
     extension # 2075. She can probably direct you to your local Pheresis
     center or Red Cross Donation center. Try that and see what happens.

    RE: -.5
    
    According to the recording, that 800 number is not available from
    my calling area.  Are there any other 800 numbers?
    
    Barb

    RE:-.5
    
    Try the following number given to me by the Pheresis Center:
    
    # 1-800-922-H-E-R-O ....ASK FOR DEBORAH KATCHER BUCKLEY. 
    # 1-800-922-4-3-7-6 ....ASK FOR DEBORAH KATCHER BUCKLEY.
                                           
    
                            If Deborah isn't available, ask for 
                                     Jennifer Paquin
    
    Thanks for pointing that out to me, Barb. She also has VOICEMAIL
    that you can leave at the other 1-800-#. 

    ***********SPECIAL ANNOUNCEMENT************
    
    Last night, I spoke with Jim and Karen about Pat's condition. I
    guess it really is starting to look pretty bad for this woman. She
    looks as though she weighs *under* 75 pounds, she is very weak and
    looks very drawn. It doesn't look that good for her. I was hoping
    that if you, for whatever reason, cannot get down to the Red Cross
    or the Pheresis center, or you can't get through or whatever...I
    think at this point it would be just as helpful just to call Pat
    at this point...just to see if there's *any* way you could be of
    help to her at all. Don't call anybody else right now...call Pat.
    She's the one we're trying to help, after all...who would better
    answer your questions than her? And she could use a good word right
    now...something, *anything* positive would help her. So, please...
    if you do *nothing else*...please call Pat at # 508-754-3520. If
    the line is busy, please try again. 
    
    I urge you to do this before time runs out. Thanks to all who have
    helped and to all those who will help.
    
     

Um, I've stayed out of this before now, but I'd like to know, CSCMA::BALDWIN
(sorry, I don't know your first name), whether you've cleared with Pat the
idea that she should be bombarded with calls from total strangers.  
I know that I, as a mother, would prefer to spend my time with close family and
friends if "things were looking bad", rather than be constantly interrupted by
phone calls with unfocussed offers of help.

If I recall, you mentioned that your church has taken this on as a project.
Perhaps there's someone there that can serve as a liason?  It seems to me
that this would be a better solution.  Or perhaps, you yourself can take this on
as your role. 

I know that when my late mother was in her terminal stages, *NONE* of us
wanted to talk to j-random people who were only offering unfocussed help. 

Again, Jody requested that you at least post Pat's blood type; perhaps you
might do that?

With prayers for Pat,

Bobbi

    re-.9
    
    Thank you Bobbi. I appreciate your involvement. Maybe a liason would
    be a good idea...and I *do* know that Jim and Karen would want to
    hear from anyone wishing to express their love, compassion, and
    concern for Pat Brindisi. I can't get a hold of Pat right now, but
    she knew of this from the start and has given us her "blessing"
    (for lack of a better word) as long as it gets people involved to
    help. If we can reach that one individual who can assist her in
    this situation, I don't think there's anything wrong in that...but
    I want to thank you again for keeping things in perspective just
    in case we lose sight of our goals here. I appreciate it immensely.
    
    So, for those who would rather call an intermediary party rather
    than speak to Pat herself, call #1-508-562-1082 and ask Jim and
    Karen how you can help. They started this whole ball going on how
    to best help her, they are more in contact with her than anybody
    and they would be the *best* people to contact. Thank you again.
                                                    

    *sigh* I just tried both 800 lines and the number for Karen and
    Jim.  Theirs has evidently been disconnected, and the 800's still
    don't work.  If there's anything else I can do, send me mail;
    otherwise, I'm at a loss as to how I may help when I'm so far away.
    
    Barb

    RE-.11
    
    Barb,
    
    Try #508-562-6625 again. It hasn't been disconnected, and Jim and
    Karen have an answering machine. They are home right now, but will
    probably have to leave soon.
    
    Kevin

    Could you please post the blood type?
    

    
    I *believe* her blood type is AB negative...This is non-comfirmed.
    
    *****HOWEVER*****I have been told to emphasize that blood type has
    absolutely NO signifigance in this, what-so-ever. Even if you're
    an O positive, go out and donate in Pat's name, and she will receive
    credit for your generosity. Refer back to 111.2 for the specifics,
    then proceed from there. Thank you. 

    Blood type DOES have something to do with it if you are trying to get a
    marrow match and be a marrow donor.  Blood type is irrelevant if you
    are simply donating platelets for apheresis(?).
    
    -Jody
    

    Just for a reminder of numbers/people to contact:
    
    James and Karen # 508-562-6625
    
    Pat and Bob Brindisi # 508-754-3520
    
    Park Avenue Red Cross # 508-791-7444
    
    Deborah Katcher Buckley # 800-258-0025 extension # 2075

    Blood type is irrelevant to bone marrow matches. My daughter
    was a bone marrow donor to a leukemia patient; neither had the 
    same blood type and the match was considered "perfect". It is not
    uncommon for the bone marrow recipient to be a different blood
    type after the transplant.
    
    sylvia 

    How *is* Pat doing, anyway?  We need an update!
    
    Barb

    I'm sorry, but I have been on vacation for the last week or so,
    and I really have no new information to report on her condition.
    The last time I *did* see her, however, she actually looked very
    good. She is still very pale and frail-looking, but her spirits
    seem good. She and her husband, Bob, are helping out with our church
    group's first play production of "GODSPELL", and I'm sure they'll
    both be of tremendous help to us. I saw Bob at church yesterday,
    but only in passing. I did not see Pat, but because it was confirmation
    Sunday, it was awfully crowded yesterday. So, I might have just
    missed her. I'll leave those numbers again in a day or two. Thanks
    to all the "Inquiring Minds".

    I TALKED TO PAT LAST WEEK AND SHE GAVE ME THESE PHONE NUMBERS FOR
    SOME OTHER DONOR CENTERS.
    FORT COLLINS COLORADO- (303) 490-4184, MCI#-369-9782
    ARIZONA-(602) 949-1412 EX. 260
    LOS ANGELES CALIF. (213) 739-4594, MCI# 366-2185
    SACRAMENTO CALF. (916) 456-1500 EX. 367, MCI# 310-2620
    THESE ARE JUST A FEW ,IF YOU NEED A NUMBER FOR A DIFFERENT STATE
    PLEASE LET ME KNOW. BY THE WAY PATS BLOOD TYPE IS A NEG. BUT LIKE
    SOMEONE HAD MENTIONED BEFORE THE BLOOD TYPE REALLY ISN'T IMPORTANT.
    PAT ALSO SAID IF YOU CAN NOT GET THRU TO ANY OF THESE NUMBERS THEN
    PLEASE CALL HER SHE WILL NOT MIND AT ALL,OR FOR THAT MATTER JUST
    CALL HER DURING THE DAY OR EARLY EVENING.THE NUMBER AGAIN IS
    (508) 754-3520.

    
    Just a rumour...I'm getting this information from third-hand sources,
    but I guess Pat was informed that there may (REPEAT: "MAY") be a
    match for her. She is still quite weak, from what I understand,
    but this is a good sign for us to keep her in our prayers. Keep
    trying the numbers listed in the previous reply and don't stop trying
    please. There's still a long way to go from here.

    There has been no real change in Pat's status since the previous
    note. There is still the possibility of a match, and she is still
    quite weak. My wife told me Pat has lost some more weight as well,
    so please keep Pat in your prayers.

    Thanks for the update, she is indeed in my prayers.

    I JUST WANT TO LET ALL OF YOU IN ON THE GOOD NEWS, PAT HAD HER
    TRANSPLANT SATURDAY AUG. 18, SHE IS DOING PRETTY GOOD CONSIDERING
    ALL THAT SHE HAS BEEN THRU. WE WILL KNOW IN THREE-FOUR WEEKS HOW
    WELL THE BONEMARROW HAS TAKEN. THANK YOU ALL FOR YOUR PRAYERS
    AND CONCERN.
    SUE

    That *IS* good news, Sue!  But we'll still keep her in our prayers just
    in case, eh?
    
    						=maggie 

    Well, I spoke to Jim and Karen last night about Pat. It seems they've
    spoken with her quite a number of times since the operation, and
    while she isn't feeling great, she is doing as well as can be expected.
    They told me that no one can really visit her because if someone
    has a cold, she'll pick up that cold, even though she's in a plastic
    confine of sorts (to keep out any form of germs). She hasn't had
    a lot of visitors, but we think this would be a nice idea for her.
    Below, I'll list her address at the hospital and if anyone wants
    to send her either cards or flowers, etc. I'm sure she'd appreciate
    it. (She just would like to hear a friendly voice now and then as
    well, so I'll leave her number as well.
    
    If you would rather, my wife and I are probably going to see her
    sometime this weekend, so if you want to just send me a message
    for her through e-mail (CSCMA::BALDWIN), I'd gladly deliver it to
    her for you. I'll put the messages all together in a bunch and give
    them to her when I see her. Thanks again for all your prayers and
    responses expressing concern for Pat.
    
    ADDRESS: PAT BRINDISI, 9D77
             BRIGHAM AND WOMEN'S HOSPITAL
             75 FRANCIS STREET
             BOSTON, MASSACHUSETTS 02115
    
             (617) 732-6011
    
    
    her phone number as well)

    I am a platelet doner, and whenever I go to donate, the nurses ask
    about my latest show.  They are always telling me that now they have
    two acters.  This last time, I was asking if they had an update on
    Pat, and we got to talking about the fact that I had been "bumped"
    from my last scheduled donation, blahblahblah.  Anyway, they ended by
    saying that their other acter had said he couldn't make it a certain
    night, because he had a rehearsal, and that he was Pat Brindisi's 
    cousin.  Actually, Pat's husband's cousin.  
    
    To make a long story short, he is in the same show I am in, and I see
    him about three times a week!  So, I will try to keep current on Pat's
    condition.  Last night he said that she was about where she sould be,
    and they still won't fully know if her body has accepted the
    transplant for another couple of weeks.
    
    E Grace

    Just a reminder of Pat's address to send cards and flowers:
    
    Pat Brindisi, 9D77
    Brigham and Women's Hospital
    75 Francis Street
    Boston, Massachusetts 02115
    
    or call her at:
    
    (617) 732-6011
    
    Thanks.

    I am sorry to say that I have bad news.  I asked Mike at rehearsal 
    Friday night, and he said the marrow "didn't take".  I asked him a bit
    more about it yesterday, and he said he is not sure exactly why, he had
    just found out and didn't have all the details.  He is not sure if they
    will be able to try again or not, but if they do, it will be soon.
    
    Pat must be a very special lady.  I mentioned that I had heard that she
    was very nice, and had a nice family, and he absolutely enthused over
    her!  I thought to myself, "how nice to have a family member-in-law
    *like* you so much."  It wasn't just that he loved her and was very
    concerned about her, it was that he really *likes* her.  I think that 
    is one of rarest of emotions...even more so than love.
    
    So, I'll keep her in my prayers and thoughts.  I thought you would all
    want to know.
    
    I finally got registered in the National Bone Marrow Bank, so who
    knows, I might finally be a perfect match for someone!
    
    E Grace

    Sorry if the last doesn't make a lot of sense, I've been up since 
    yesterday at noon.  Well, alright, I did have 1 hours sleep.
    
    Sigh
    
    and a 7 hour rehearsal.
    
    E G.

    IT IS TRUE PAT'S BONEMARROW DID NOT TAKE, AND THERE HAVE BEEN SOME
    COMPLICATIONS, BUT THING ARE LOOKING BETTER AND SHE WILL HAVE ANOTHER
    TRANSPLANT OCT. 16TH. THEY DID FIND ANOTHER MATCH THEY WON'T BE
    USING THE SAME ONE. I TALK TO PAT AT LEAST ONCE A WEEK, SHE IS USUALLY
    IN PRETTY GOOD SPIRITS CONSIDERING. I HAVE GONE TO SEE HER ONCE
    AND I WAS AFRAID I WOULDN'T KNOW WHAT TO SAY, OR I'D GET UPSET AND
    CRY BUT SHE IS AMAZING. SHE DID ALMOST ALL THE TALKING ASKING HOW
    IS EVERYONE IN MY FAMILY, MY BITHDAY WAS THAT WEEK AND WOULD YOU
    BELIEVE SHE EVEN HAD A BIRTHDAY CARD SITTING THERE FOR ME. BUT
    THATS PAT ALWAYS THINKING OF EVERYONE ELSE. SHE IS THE BEST SISTER-
    IN-LAW ANYONE COULD ASK FOR. 
    
    SUE

    
    Pat Brindisi passed away Monday morning at 11:00am, according to
    James and Karen Mayo. We all went down Sunday to say our goodbyes.
    She fought it until the very end. A very special and courageous
    woman. The wake will be tomorrow night and the funeral service Thursday
    morning. Per Pat's request, no black will be worn. For further
    information, please contact the Greendale's People's Church in
    Greendale Worcester, Mass. 
                               
                                God Loves You,
    
                                Pat Brindisi
                         
                                Rest in Peace 
                                         

    Thank you for the final note on Pat.  Her courage is a light to
    all of us who remain behind, I'm sure.  My condolences to her family
    on their loss.
    
    Kindest Thoughts,
    Barb

    May her God grant her Blessed Rest.

    I meant to put this in yesterday, but never got the chance.
    
    I went to Pat's wake Wednesday, and found cause to rejoice.  I got
    there early, so I sat in my car for a while.  By 6:45, the parking lot
    was nearly full, and by 7:00, when the wake started, there were already
    a lot of people, waiting in line.
    
    What a celebration of the love I understand she radiated.
    
    Yes, I know it seems odd to call this a "cause to rejoice" and a
    "celebration", but that is how it felt.  For any who may feel I am
    being cold or heartless, I am not.  From what I understand from Mike,
    her husband's cousin and the star of my play, Pat was "special".
    Wednesday night, it felt like people had come to thank her for sharing
    that specialness.
    
    E Grace

    E Grace,
    
    It's not cold at all and love never dies, no matter if the fragile
    shell someone inhabited in this life has.  From following the notes on
    Pat, I am sure that she would rather have people remembering her for
    the  special person she is (or was depending on how you look at it) and
    celebrating her, rather than mourning the death.
    
    Meg