I had a real hard time with this page, but decided it
needed to be done. It is dedicated to those who in the end have
lost the battle with AA and MDS. I personally have said some
pretty stupid things as I struggle with the illness and hereby
publicly apologize for any suffering caused by my remarks. I
have strived to really clean up my act of late and am constantly
reminded that hope is by far the most important element in our
Those of us who struggle with it on a daily basis and watch our
loved ones struggle know that the footsteps are never far away. As
we try to go about our daily lives with some sense of regularity,
the dreaded disease is never far from our thoughts.
Infections, CBC’s, Dr. visits, weakness and fatigue are constant
reminders that one day our name will show up on the AA/MDS list as
"no longer with us" posted by a friend or relative.
It is with this in mind, that I will report those that I know
about since I started this site. If any of you are so inclined,
please feel free to send me a note
of those you would like remembered here with a short note of
dedication. This page is done in the spirit of "lest we
forget" and is dedicated to the names you see below. Thanks.
Here then, those who have died from AA or MDS that others of us
will not forget:
It is with great sadness I report the passing of
George Mukombe on 3/26/03. He was a very nice young man
from Africa in his 20’s. He had such a nice smile and
kind heart. I hope someday that nobody will die from AA
or MDS. Wishing everybody on this list the best of
Randy Ramage – His passing hit me pretty hard and is the
reason I decided to start the page. He had researched the
illness very extensively and was dealing with top notch doctors and
information yet he too, lost in the end. He developed a
glossary of terms which I often used in my research at http://www.btinternet.com/~randy.ramage/aamdsglossary_folder/index.html
I will not forget you
Randy and if they have Internet access where you are, know that I
will be thinking about you. From Bryony Dettmar: I’m not sure if you
already know this, but Randy Ramage sadly died on 22nd March 2002.
He had been undergoing a BMT at St. George’s Hospital here in the UK
but died of a fungal infection.
Ben – I am so saddened, for myself, to tell you that our
son Ben peacefully died on Nov 19th. He was in the greatest place of
peace, and very prepared in spirit. He had SAA, dx Nov 14th, 2000,
had just finished his third ATG, claiming he "knew my body
cannot take another treatment." He was always amazingly
positive, and changed countless people’s lives with his story of
courage and joy. While he currently knows more freedom than ever
before, we do miss him desparately. Stay strong in your fights…
this is not neccessarily a "straight-up" death due to SAA
(he was rushed into PICU from a three day haspital stay and had
multiple organ failure beginning with an adrenal crisis), but now is
not a time for his father and I to even think about that. God bless
you all. Diana
Barb Hendrix – Barb was very active on the AA/MDS site and
in June of 2001, she posed the question "Am I dying or
Not? In my response, I said some things I wish I had kept to
myself. Sadly, Barb aka "thetoad" died from MDS
complications. It is with a great deal of regret and
humbleness, I wish that she were still with us! I cried like a baby
when I read of her passing.
Notes from Barb from the AA/MDS Site:
May 14. 2001
I visited your website, and you’ve done a great job with it. As I
said, I am an MDS patient. I can’t offer much on AA, but we have
quite a few here who have AA and many with platelet problems. After
seeing your platelet and ANC counts, I can imagine how frightening
this has been for you. I share the low ANC (0.3), but, fortunately,
I haven’t had trouble with infections as yet. I think there has been
good success using ATG and ALG among AA members. I’ll let them tell
you about that.
Welcome to our group.
June 4, 2001
This will sound dumb, but I really don’t know how well or sick I
Because the Hutch predicted that I would progress to AML by
August of this year, I had my 3rd BMA in April. The test showed 15%
blasts, up from 1.8% last November. The hemo here said that he
usually starts chemo when the blasts reach 20%. There was a possible
dx of AML-M6, but there was a question as to whether the epogen
shots had thrown off the test results. The pathologist suggested we
stop the shots and redo the BMA. I am not sure that my hemo thought
it was necessary, but agreed to redo it to satisfy my mind. The
pathology results should be back in the next day or so.
I had many questions regarding chemo and other things, but
decided to wait to ask them until we discussed the results of the
redone BMA. I didn’t know whether to schedule the next appointment
for when the pathology report was back or wait until the cytology
report was back also. The doctor was tied up with another patient,
so I didn’t make the appointment until today. The word from the
doctor was that he wanted to see me in three months. He evidently
didn’t feel it was necessary to discuss the new test results when
they come in.
While scheduling the next appointment, the nurse accidently ended
up with the year 2003 on her screen. I made a joke about the date,
and she was surprised that I thought I might not still be here then.
I can understand that the nurses may not be up on the individual
prognosis for each patient, but added to the doctor’s lack of a
sense of urgency, I am not sure just where I am.
The transfusions are now closer to every three weeks, rather than
four. My WBC runs around 1.7 and my ANC is .3 (300). I have been
fortunate not to have infections, and my platelets are holding okay,
so I don’t have bleeding problems. My hemo doesn’t worry about
counts until you start having symptoms like infection or bleeding.
Other than the symptoms of anemia (fatigue, shortness of breath,
rapid heart beat, etc.), that cause me to have transfusions, I don’t
feel all that much different than I have for several years. I surely
don’t look or really feel as though I could be dying in a relatively
short period of time.
Have I gotten carried away with the studying of the counts and
reading too much? Am I making more of this than I should? Or is it
just that this particular hemo treats MDS in his own way in his own
time? I have told my family and friends that I am seriously ill.
Have I exaggerated the circumstances to them?
I am seriously confused. Or maybe I have had brain burnout over
this. I should have waited for these newest results before posting
this, but the "make an appointment in three months" has
really thrown me off.
After all my talk of Medicare, treatment costs, etc., this will
sound a bit crazy. I have decided not to have a transplant. Just
like before, I am comfortable with this decision. The new dx had me
going for a couple of days, but once the dust settled, I knew that
it was best for me to stick with supportive care. I don’t know why
this is so, but, I know that it is.
Shortly after this note, Barbara decided to indeed go for the BMT,
and there are numerous posting between June and September from well
wishers. She had obviously made a lot of friends on the list
and you could almost feel them trying to will her through the
September 6, 2001
I just wanted to let you guys know that my Mom passed away this
morning at 4:00 am. They said pnumonia on Monday, it was Mom’s
choice not to have a ventilator used. She got very tired of working
at breathing. Thank you for all the cards.
November 25, 1996
MY SON JEREMY WAS DIAGNOSED
ON SEP. 13, 1996. THE DR. TRIED EVERYTHING, AND I MEAN
EVERYTHING. JEREMY NEVER GOT BETTER. HE WAS SEVERE FROM
THE START. HE DID NOT KNOW THAT HE WAS SICK. HIS COUNT’S
WERE SO BAD (EX. WHITE COUNT 0.7 WAS THE HIGHEST)
NOTHING THEY DID SEEMED TO HELP.. HE JUST GOT SICKER. HE
COULD NOT EVEN HAVE A BONE MARROW TRANSPLANT. JEREMY WAS
17 WHEN HE PASSED AWAY. IT WAS NOV. 25, 1996. I NOW HAVE
A GOLF OUTING EVERY YEAR TO RAISE MONEY FOR RESEARCH AND
AWARENESS.. THIS IS OUR 5th YEAR. ALL I CAN DO NOW IS TO
TRY AND HELP OTHER’S WITH THIS DISEASE.. THANK-YOU FOR
DANA PILARSKI, JEREMY’S MOM
May 15, 2002
some of you may know by now, Carter died this morning at
about 2 AM. His blood pressure kept falling even
with the maximum amount of medicine. Carter was
such a valiant fight through everything. It was
his time to go. He went to heaven peacefully.
He was not in any pain or on any pain medicine.
There was no decision to ventilate him or not. (He
was thinking of me until the end) His blood
pressure decreased as he ‘went to sleep’ surrounded by
our family. Who could ask for a better way.
I want to thank each and everyone one of you for the
support, love and prayers. We would have not made
it this far without you.
I am meeting with the funeral home today at 2PM, so will
have details for you then.
1961 and Representative of Other Emails
Received from Those Who Still Remember with Sadness
I have just finished reading your battle with this
awful disease and admire your determination to beat
Bruce, in 1961 my darling son, aged four, died within
three months of diagnosis, There was no real
treatment way back then. It grieves me to think
that, with all the advances in medicine, there is
still no guaranteed cure.
I write this with a heavy heart – one really
never gets over the death of a child.
No doubt here, in Australia, research is still going
on and patients battling with A.A just as you are
doing. Keep the fight going – your story will
encourage other sufferers I’m sure.