A special request

[B. Greene]

Ron has written out something he would like for me to post to all of you.

Before I do I will tell you that due to the rapidly escalating blasts 83%, and all the associated problems the Boston vaccine is out. It was a long shot at best but you know we always hope. Due to the gastro problems we have pretty much been forced into the position of not doing anything at this point. The Dr. feels it just wouldn’t be right to cause him further pain without any hope of anything really helping, especially since Ron just wants to be home. That pretty much sums it up.

I’ve asked Barbra to post this for me. All of us at times, I believe, think we will do something and then for some reason or another put if off and it just never happens. I didn’t want that to be the case in this instance.

I would like to ask each of you to join me in a special tribute, recognition if you will, to a member of the panel who I believe has extended his hand to each of us and guided us through this maze into which we’ve found ourselves. That someone would be Neil.

On November 4, 2002 we went in to receive results from a BMB fully expecting to be told the problems were the result of a drug I was taking. Instead I was told I could expect to live perhaps three months. This was the first time we had ever heard the term Myelodysplastic Syndrome. We were ushered out of the office, to the dot, on the fifteen minutes we were given to absorb this news. A nurse was kind enough to write down how to even spell the darn thing.

Barbra found this panel and the first person who began the process of helping us was Neil. He has continued to do so through out the two and one half years we’ve been battling. He has always been able to find the info we couldn’t find, stayed calm and clear in his thoughts and everyone knows about his “List of Questions.”

I’ve thought often of how hard this must be for him. His patience in repeating the information to all the new members, the willingness to search for answers to the many questions asked of him; the same questions over and over, and then I think of the countless people he has helped.

Most of all I think how difficult it must be to say goodbye to all the people he has had to do so through his years on the forum. Far, far too many. That would be tough.

Neil, I not only thank you but salute you.

Thank you to each and every member for their thoughts, suggestions, prayers and support. Our dinner table conversation would seem to appear we have a very large number of friends and family as I ask about how Suzanne liked the play, how the Bob’s are doing, if George is doing better. I so respect Barb’s father in the way he has waged his battle, spirit and humor. The list goes on and on with each of you being very special. Suzaane has become very dear to us. As she wages her own battle she is always there checking on us every day and doing all she can to help. She will be our lifelong friend. I also know Barbra has monitored the posts, to spare me the sad news, and my thoughts are with all of you as well.

As you, no doubt, already know I have a wonderful life, one I surely do not want to leave. So even though things look less than bright we will continue to fight, hope and enjoy each day we are given. You already know my incredible Barbra; with her by my side along with those kids, I am so proud of, we just might hang in there for a good long while.

To the good fight. whichever way you choose to wage it.

Ron

[sarah]

Hi Ron and Barbra,
I join you in a salute and thank you to Neil. Beautifully written. This forum has been a godsend to me these last 3 years.Neil has been wonderful. I think and pray for each of you I have come to know daily.
Ron, glad to know you continue to enjoy each day as so many of us deal with this disease in so many different ways.
God Bless,
Sarah

[Jack_dup1]

Ron and Barbra,
I could not agree more with you, in regards to Neil. He has brought a lot of calm to all of us through this storm called MDS. Two years ago when I was given the usual 10 to 60 months life expectancy, he was the voice of reason and re-assurance. I get so angry now when I read a new members post and it starts off with “the doctor say I have days, or months to live”, I can feel the fear and confusion the initial diagnoses brings.
I don’t always post, but I read them every day and have followed you and Barbra’s battle, it has given me strength and I thank you for sharing. I will keep you both in my thoughts and prayers, the battle is not over yet.
Jack R.

[Suzanne]

What a beautiful letter Ron. You are right, Neil has helped us all. You and Barbra are an everyday part of my life too. It is a wonderful friendship that I treasure.The relationships, information and support on the forum have been a god send for me too. Glad you will keep up the fight in your own way! I am wishing you both many days of good living, happiness, and peace.

[alexandra7]

Ohhh how right you are .Among the first ones who wrote to me was Neil offering his help .Thank you Neil. Ron you have wrote such a beautiful letter and impressed me again . As I ‘ve said before I really admire you for the courage you have in facing this horrible disese.I bring a tribute and special thanks to all the ones on this forum who have helped others by sharing their experiences and conforting the ones who were on the edge . I thank all the ones who helped me during this 3 month I ‘ve been on the forum because they’ve helped me understand what was going on. I thank all the good people out there for their advice and concern .I thank this forum for helping me to find a little light in all this . I thank you all for having the patience to read my posts and having the kindness to answer with nice words and good thoughts . I thank you for being my friends . I will pray for you all…Alexa

[eve]

dear ron

what a wonderful, deep from the heart message – you have managed to put into words what a lot of us have felt

praying that you win your battle

eve

[Kathy G]

Ron & Barb-
What a wonderful tribute – I know we are all sad to have found this board but at the same time it has brought a wealth of knowledge and comfort.
Believe in miracles and live each day to the fullest you are able.
P.S.
My Dad had to have a platelet transfusion yesterday (his first) and he told the nurse I’ve read that it helps if you take tylenol and benedryl – she said you’re right and they gave it to him and he did just fine. We would never of know that without this board. Thanks everyone for you guidance as we travel this journey of MDS.
He’s on his 3rd round of Vidaza.

Kathy

[MEG]

I too thank & salute Neil, the voice of reason. How wonderfully written! You & Barbra are 2 very special souls.

You are in our thoughts & prayers.

[Bec]

Thank you to not only Neil but to Ron And Barbra.

You all have been such an inspiration. Thanks for the letter, your constant sharing, your endless hope and for your fight.

You will remain in my prayers.

Bec

[Neil]

Dear Ron and Barbra,
Thank you very much for your kind words and thoughts. I just wish and pray that they did not have to be written.
Your battle with MDS has been an inspiration to us. You fought long and hard. You exhausted every avenue to conquer this disease. You both will be in my thoughts and prayers forever.
I sincerely hope there will be research advancements in the near future that will provide more help and a cure for MDS

[Bob P]

To Ron & Barb,
I to want to join you with my thanks to Neil for all of his help and I salute him as well. We all have to be thankful to him for all the help he has given all of us on the forum. I’m very happy that someone put into words what we all feel.

Bob…

[shirlsgirl]

Dear Ron and Barbra,

I am very saddened to see Ron’s blast count…hang in there Ron. You are an inspiration to us all.

Ron, what a beautiful letter!! I too would like to express my gratitude to Neil. After my mom’s diagnosis I was desperate for information…and Neil responded immediately and tirelessly with information.(he has probably repeated hundreds of times to others) Thank you so much Neil!!

thinking of you Ron and Barbra,

love, Jody

[Terri]

Dear Barbra and Ron,
First I join you Ron in saluting our dear friend Neil, yes he is always there and I wonder how he does it day and day out helping all of us while fighting his own battle.
But Ron, you and Barbra have also been a source of inspiration. I have learned a lot and I think it was one of Barbras post last year that I first learned of the 5 AZA on a compassionate basis and was able to get Bob’s doctor to go for it. So you see you both are my hero’s as well.

We all have found so many friends on this forum even though it is not a good reason we find ourselves here, but without each other the battle would be harder.

I continue to pray for you both as well as all forum members. I know you both will not give up hope.

In front of me each day I have a lenten calendar with a dailry scripture for this season, Monday when I read the one for that day I thought of you both. It was titled
“Surprise”
God can heal in very improbably ways, Let us have faith in God and be ready for Divine Surprises.
2 kings 5-l-15

Maybe your divine Surprise would be that those darn blasts would just be gone!!!!

[Bill and Mary]

Barbara and Ron

I too am beholden to Neil for information and support. THANKS Neil!

Ron, you and Barbara are in our thoughts and prayers. You beat the odds so far let us hope you can do so a good bit longer.

Bill

[Carrie]

Neil is really awesome! I gave him the highest number of stars!

[Author]

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