Wednesday, December 19, 2012

Let's Change The World

I am doing my best to think of something to do that will be helpful for others who need a transplant donor, to lessen my sorrow and disappointment- something that will have a lasting impact. 
I have some ideas, after all, what good is my life's journey's pain if I can't use it to somehow inspire others to do something wonderful? I AM, though, I AM sad and disappointed, and frightened. 
So, I'm only out and about when I can maintain some cheer for folks and always I'm thinking thinking thinking of a plan.
I want to change the way people think of donation in general, stem cell, bone marrow, blood, organ donation.
I want to make it a cultural rite of passage to adulthood, akin to a first legal drink, a driver's license, registering to vote.
For people to celebrate it, understand it and look forward to being old enough to do it, not for it to be a mysterious and oft misunderstood action.
If registering for these things was more common, more peoples' lives would be saved without so much drama, stress, expense, difficulty and rarity.
Without so much heartache.

I love you, thank you all for your gifts to us of comfort and affection, the telephone calls, texts, emails and gifts have been such a surprise. I am so touched. I treasure you all so much, I can not express it enough. I hold your affection towards me and the emotional support I receive steady in my heart. What a comfort to know that we have been here together, that there are folks like you wonderful souls, in this world. I am still surprised this minute at the affection I'm receiving, just when I am truly in need of it. thank you all for knowing this, and for coming forward. You are helping me get through this horror so much, my sadness would be much stronger if I didn't have your presence in my life. Thank you.

Now, let's all pull together and save some lives, help me to leave a legacy of light!

Here are some links to start with, links in the main about me, but know, please, that my goal is not to find a donor for myself.  More wordiness from me after the links:

My transplant doctor, Dr. Sunita Nasta, in case you want to contact the team for anything

An article from Philadelphia Jewish Voice about my search, with links to Be The Match

The Gift Of Life page that my cousin Rebecca made for me, what a wonderful gift!

A link to Be The Match, a registry in the US

A video about my search

And this,
A list of registries all over the world

I want to get 10,000 people to register to become donors before I am gone, that is a small enough number and quite doable if we all pull together! 
My genetics are very rare, and finding another match for me will be difficult, but imagine, finding matches for others- so they do not suffer this way- what a gift we can give.
 I do not want just certain people to register, I want you to ask and cajole EVERY PERSON whom you are in contact with to register, and if they can not register, ask and cajole them to get someone to else to. 
If you have a job, if you go to a church or synagogue, temple or mosque, if you are in a knitting group, chorus or other social activity,if you are in school, if you are a member of a museum, if you shop at a store or a farmers' market, if you do ANYTHING that involves others, ANYTHING AT ALL,  PLEASE consider making a drive in that place, PLEASE. I will help you to figure out how to go about it, just ask me, I will learn and then help you to learn.

I  am not giving up on my journey, I am full of hope for many tomorrows, this is just the next step for me in my love of helping others, I see this need and the answer came to me and now I am doing this, and I am asking YOU to help me. 
I have no money to achieve this, but I do have a heart that cares and a mind that is quick, and a story that just may open the heart of others to do something that they might not otherwise feel comfortable doing, well, let's do this, let's SAVE SOME LIVES!
PS: Didn't I look good yesterday? Just back from chemotherapy, too!


  1. You HAVE changed my world, my sweetpea, just by your sweet spirit and kind smile and bright outlook on EVERYTHING---always, from forever the time we met.

    When DS#1 was born, I received 5 pints of blood from people in my community, with many others lined up to share in the helping, and from that moment, I've been on a donor list---every single thing that can be used or given or even salvaged after I've left the air.

    I sent my love to you this Blessed Season, my Dearies, and would you PLEASE e-mail me a mailing address??

    love you,


  2. It's so wonderful to see so many reaching out to help you!

  3. Hi Rebecca

    I was signposted to your blog by a Jewish friend, who is half of the dynamic duo who run the local Chabad. I am Jewish myself, although from an Ashkenazi background and living in Nottingham, UK. I have Multiple Myeloma, which is another rare blood cancer. I had a stem cell transplant of my own stem cells (auto transplant) in August 2011 and in May this year, I had a donor transplant, as the remission achieved with the auto was sadly short-lived.

    My brother was not a suitable match and I know I was extremely lucky to find a match - a 19-year old British woman. I am guessing she may well be Jewish, as I know, like you, that the odds are higher for finding a match within the same genetic ethnic background.

    I am now 7 months post-transplant and recovering well. Because of my raised awareness around the low numbers of Jews (and others from ethnic minority backgrounds) on stem cell registers and because I have a friend (not Jewish) who is also in need of a match, I am doing my utmost to recruit more people to register.

    I am about to start volunteering with R&Be, going into schools and colleges to raise awareness and hopefully get more young people to register, like you said, like it's a rite of passage:

    I am not sure if or how we could help each other, but I would very much like to make contact with you and support you, even if it's only as a cheerleader. I have sent you a friend request on Facebook. If you're interested to know more about me, what I've gone through and more specifically, what I've done so far on this mission, please take a look at my blog:

    I wish you all the luck in the world and will keep you in mind.
    Jet x