Beginnings

My first stem cell infusion took place in New York City on a cold March day very recently. The event was a long time coming.  I was more enthusiastic than apprehensive.  I knew a long, thin  needle would be inserted into my spinal column and the cells released.  I was ready.

The stem cells had been taken from bone marrow pulled from my sternum many months ago.  The cells were cultivated, fed and nourished for half a year.  The time had come to introduce them into their new home.   The procedure would be groundbreaking, the first of its kind.  I looked like hell, an allergic reaction to all the drugs I had been taking tearing at my skin.  I was uncomfortable but ready to celebrate.

55 Responses to Beginnings

  1. Mischele Coon March 20, 2014 at 10:22 am #

    Your glimmer of hope is our glimmer of hope.

  2. Christopher March 20, 2014 at 11:13 am #

    The most important thing is the last thing you said in the video.

    What anyone else in the universe thinks is immaterial at this point.

    I wish you the strength to find patience, the fortitude to gather peace in all places and moments and the grace to keep your faith in this process above self doubt. Good luck and God speed to you sir.

    • Richard March 20, 2014 at 1:19 pm #

      Christopher-

      My thanks.

      R.

  3. Gaye March 20, 2014 at 12:05 pm #

    Bless you Richard ……. For taking this Leap of faith , For being a pioneer For all of us! I wish you the best And look forward to reading Your blog and twitter Comments……. Often, Your Witty Way with words make me smile Or laugh As I read them.

    Again, I want to Thank you Richard So much For allowing All of us With MS To Follow You On this groundbreaking journey! And for Meredith, To share Her views Along the way Regarding MS Being a family Chronic illness And How humor Helps all of you cope with it.

    • Richard March 20, 2014 at 1:21 pm #

      Gaye-

      It is a privilege.

      Best,
      R.

  4. Betty Moody March 20, 2014 at 12:13 pm #

    Dear Richard,
    I am beyond words to have seen your procedure today on the video.
    9.5 MM strong, plus the entire MS community is with you.
    You let us in. We’re with you for the long haul.

    • Richard March 20, 2014 at 1:23 pm #

      Betty-

      Thank you. Your support means a lot.

      Best,
      R.

  5. Matt March 20, 2014 at 1:33 pm #

    Congrats Richard!!!! Let the real fun begin now!! Thank you for showing the world and I can’t wait to see more and read more!! God bless

    • Richard March 20, 2014 at 9:26 pm #

      Thanks.

      R.

      • Matt March 21, 2014 at 8:16 am #

        Rest! I see your sending messages at 5 am! Lol I had a stem cell high after my stem cells were put back in for about a week.

  6. Terri McMillen March 20, 2014 at 1:33 pm #

    Wow,
    It’s very interesting to compare your experience to my husband’s who is currently in Panama receiving stem cell therapy for neuropathic pain. The vibe down there appears to be “no big deal” of course you are here for stem cells! Today is International Happiness Day…so I’m choosing to feel happy about the science of stem cells and the chance for improvement for both of you!
    Terri

    • Richard March 20, 2014 at 9:27 pm #

      Thanks. Be happy.

      R.

    • Mary Baker March 21, 2014 at 11:37 pm #

      Terri,

      We’d love to hear about your husband’s experience in Panama. My husband was referred to the Stem Cell Institute. Comments we see online are mixed. We are waiting to hear a bit more about it before jumping in.

      Mary

  7. MimiNOLA March 20, 2014 at 1:44 pm #

    Thank you for sharing your journey with us. I have hoped that this was the answer for many years. Will be waiting to hear the results with my own glimmer of hope.

    • Richard March 20, 2014 at 9:28 pm #

      Thanks. Be happy.

      R.

  8. Kyle March 20, 2014 at 3:24 pm #

    Thank you for being Our Pioneer 🙂 I know that with Dr. Sadiq, Dr. Harris and Nurse Dot you are in good hands!

    Kyle

    • Richard March 21, 2014 at 9:25 am #

      YOU BET.

      R.

  9. David March 20, 2014 at 3:56 pm #

    Richard

    Congratulations and best of luck to you.
    As I watched the infusion I only wished for you to walk and see again like before you had ms.
    I prayed too, as much for your whole family because I know that’s what they want too.
    One final thing I noticed was that you doctor has a good sense of humor, I’m sure he is rooting for you to have amazing success.
    Thank -you for taking us along, Richard, you are the Pioneer.

    • Richard March 20, 2014 at 9:30 pm #

      David-

      great sense of humor. Essential.

      R.

      R.

  10. Lori March 20, 2014 at 4:11 pm #

    Thank you for posting the video clip of your stem cell infusion. It’s wonderful that this has finally taken place for you! We are hoping it is well worth the wait!!!
    Good luck!! It is exciting to read your posts…and hope so much for you to have some improvement in symptoms….and halt the progression. Wouldn’t that be a miracle?

    • Richard March 20, 2014 at 9:31 pm #

      Lori-

      Yes hard to go there. Keep hoping.

      R.

  11. Brian Lilly March 20, 2014 at 4:17 pm #

    Wow! I don’t think I’ve ever been as proud of someone I’ve never met! And since you are the very first to receive this treatment , we may have just witnessed an historical event in medicine. Even if nothing happens, we still will have learned something. But in the meantime, I’m just gonna go ahead and hope for the best. I know you’re not a religious person, and neither am I. So please know that there is no religious pun intended when I say ‘Godspeed my guinea pig brother’!!!

    • Richard March 21, 2014 at 5:30 am #

      Love it.

      R,

  12. Amy Corcoran-Hunt March 20, 2014 at 4:18 pm #

    Congratulations, thank you, and I’ll be watching this space!

    • Richard March 21, 2014 at 5:31 am #

      Thanks. I’m with you.

      R.

  13. Beth Hill March 20, 2014 at 4:35 pm #

    Dear Richard,

    I just watched your stem cell infusion this afternoon, and it gives me so much hope.

    Thank you

    • Richard March 21, 2014 at 5:32 am #

      Beth-

      Hold onto it.

      R.

  14. Michele Manzi March 20, 2014 at 5:31 pm #

    Richard:

    Congratulations! All the best I look forward to reading further posts updating us on your journey. This trial is huge for all of us struggling with this monster.

    Thank you,

    Michele

    • Richard March 21, 2014 at 5:33 am #

      We are in this together. Keep the hope comong.

      R.

  15. Hanna March 20, 2014 at 5:40 pm #

    Hi, Richard. I am following your site very avidly. (I also read your books, ‘Strong at the Broken Places’ and ‘Blindsided’ – great reads!)
    My daughter, a patient of Dr. Sadiq, is also a candidate for the stem cell Phase One Trial, and will be receiving stem cells very shortly. I would really love to see your video of the infusion, but my internet filter does not permit me to receive YouTube. Can you send me this clip in a different format?
    Thanks,
    Hanna

    • Richard March 21, 2014 at 5:36 am #

      Hanna-

      Don’t know how. Not the brightest light on the street. Maybe a different computer? Sorry.

      R.

  16. Anne March 20, 2014 at 6:22 pm #

    Richard, very exciting journey. Thank you for sharing with us. I hope that your treatment will prove to be very successful and that you show great improvements in the near future. We are all rooting for you and all the others involved in this clinical trial.

    Again thank you for sharing your journey with us.

    • Richard March 21, 2014 at 5:37 am #

      We are paving the road for you.

      Best,
      R.

  17. Mark March 20, 2014 at 6:50 pm #

    Thank you very much for sharing the experience. You are courageous! I didn’t realize you were the very first person to try this treatment. I am grateful for the blog and very interested in your progress. Words like thank you and grateful don’t seem big enough. But they are all I can think of right now and it is very sincere.
    Cheers!
    Mark

    • Carol March 21, 2014 at 3:01 am #

      The day finally came! I’m so happy for you, Richard. This represents so much hope. I see good things ahead for all of us. There were some days this week when I couldn’t think about this without crying. I think it was because I was thinking about all the brainpower and hard work, not to mention the money, that is behind the MS research that has and continues to come to fruition. I am part of a new generation of relatively newly diagnosed MS patients who haven’t lost much physically or mentally yet (the operative word there is ‘yet’), and I’m letting myself hope because of your story. Thank you for writing and sharing. I am so grateful to you for making a real difference in how I feel about my MS.

      In hope and possibility,

      Carol Wouters

    • Richard March 21, 2014 at 5:40 am #

      Thanks, Mark-

      Say nothing. All of us are on this journey together, and I do beliwcw qw qill get there.
      R.

    • Richard March 21, 2014 at 9:28 am #

      Mark-

      No words necessary. We are traveling together.

      Peace,
      R.

    • Richard March 23, 2014 at 2:00 pm #

      Mark-

      All of us are in this together.

      Best,
      R.

  18. JerryD March 21, 2014 at 10:49 am #

    I wish you the best on this journey. It is impressive to watch the video, apparently shot by Meredith, of your doctor doing the stem cell injection. Godspeed Richard.

    • Richard March 21, 2014 at 3:10 pm #

      Jerry-

      Thanks. I am going to get M. a job as a cameraman.

      Best,
      R.

  19. Julie March 21, 2014 at 6:36 pm #

    Richard,
    Thank you for volunteering to be the first one to try this. It brought tears to my eyes and a hope that I have never felt before about the possibilities of something beyond the possibility of “slowing the progression”.
    You will forever be the first one to try this and for that I am grateful to you. Thank you, thank you. Whether this trial is ultimately successful in the way we want it to be successful has yet to be determined but at least it’s a first step. The first of many.
    God bless you.
    Julie

    • Richard March 22, 2014 at 2:46 pm #

      Julie-

      Thanks. A great journey.

      R.

  20. MB March 21, 2014 at 11:28 pm #

    Are the stem cells supposed to migrate toward lesions and adhere to them?

    • Richard March 22, 2014 at 2:47 pm #

      Yup.

      • MB March 22, 2014 at 9:02 pm #

        Maybe the same principle as a scab (for lack of a better analogy)? Injury. Stem Cell Scab. Repair and Healing. New Layer. Very cool, really.

  21. Terri Weiss March 22, 2014 at 2:16 pm #

    Well, glory glory hallelujah Richard!!!! If I were the praying kind, I’d be doing it now : )

    I saw Dr. Sadiq on Thursday, and he told me you’d gotten your infusion and to check out your video. I should find out from his office next week where I stand. I’m hoping my cells are being as fruitful and multiplying as nicely as yours!

    I’m excited and happy for you, and sending good good vibes to you and your family from across the way. What a great way to look forward to a new season of warmth and, hopefully a brand new, fully-sighted and well-healed you!!

    As I’ve said before, I understand your cautiousness and your very guarded optimism – I hate the notion of being disappointed again too. I’m trying to feel that way about my own prospects. But I’m optimistic anyway, optimistic for you, and looking forward to a positive outcome for us both. So…. Allow me the privilege of two-score hope for all of us in the trial, for those standing or rolling behind us in line, and for everyone watching, waiting, and holding their breaths…

    : )

    Kindest regards as always,
    Terri

    • Richard March 22, 2014 at 2:49 pm #

      Terri-

      Go for it.

      R.

  22. Ted March 23, 2014 at 3:21 pm #

    Richard

    Is this the first of three infusions?

    Thanks Ted

    • Richard March 23, 2014 at 8:36 pm #

      Ted-

      Not clear.

      R.

  23. Lori March 24, 2014 at 1:57 pm #

    Richard – I realize that this treatment has never been done before – but – are the Doctors anticipating any change within a few months?

    I have watched grass grow before – it’s like waiting for the pot to boil – when you stop watching/waiting – it happens. (I know – easier said than done).

    Good luck!!

    • Richard March 24, 2014 at 2:26 pm #

      Lori-

      Thanks. Just trying to ignore the whole thing.

      Right.

      Best,
      R.

  24. Debbie March 25, 2014 at 9:05 pm #

    All I can say to you, Richard, and your family, and medical team is THANK YOU!!! After watching this video, I am very hopeful for you, and the entire MS community.

    Sincerely,
    Debbie

    • Richard March 29, 2014 at 9:58 am #

      Thanks. And now we wait.

      R.

  25. Stephen Sacko May 21, 2014 at 2:36 pm #

    Mr Cohen,
    I watched your interview this morning on Today. I also have Primary Progressive MS. Unfortunately, I live in Columbia SC therefore do not have the availability of resources as in NYC. I had investigated stem cell transplantation previously with limited results. I do not have the resources to travel to and from NYC. I am 59 years old and now “retired”(unemployed). I am on social security, own my home, and as you have been blessed with a remarkable wife( you can relate) for 36 years and counting. I am walker bound and have a mobile device known as a travel scoot for getting around. So life is still blessing me just sometimes inconvenient. My point being is I had hit a little dark moment in life but you just woke me up by telling your story. I am going to figure it out and try again. You know the saying when there’s a will there’s a way. You gave me the will again so I’ll find a way. Thanks! Please say hey to Meredith for my wife, Nancy, and I and thanks again for sharing. It feels good to get fired up again.
    Steve

  26. flagmanruss May 22, 2014 at 12:20 am #

    Best Wishes,
    I am co-leader of http://msrefugees.proboards.com/ We get it. You spoke the truth so very clearly in your interview.