Dedication to Those No Longer With Us

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 health.

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.

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.

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 process.

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.

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 LISTENING.

As 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.

Love,
Nancy

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 it.

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. God bless,

Dedications to Those No Longer With Us