The Leukemia & Lymphoma Society - Fighting Blood Cancers
32 Replies Latest reply: Oct 16, 2011 4:10 PM by Tex RSS

Unrelated Donor reaching out to recipients....

jen1970 Registered Users
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Good Morning!

 

I am new to this website and to all of this.  Honestly, I never really thought about it much until my phone rang in July.  It was the Be The Match registry letting me know that I was a match for a 54 year old female with AML.  She asked if I would consider donating and I was honored to be asked.  Three screenings later and here we are.  I will go to Hahnemann Hospital on Thursday to start the shots.  I am not sure what the weekend will be like.  I am excited and nervous at the same time.  The PBSC will be on Monday.  My 13 year old daughter is really excited.  She has told everyone that will listen and it is nice to see how proud she is.  We talk about "her" (my recipient) almost every day.  This is an international donation so I am not sure if I will ever meet her.  I often wonder if she knows that I am thinking about her and praying for her.  I wonder if she knows that someone she has never met really cares about her.  I have bought a card that I will send to her after the collection.

 

I cannot even begin to understand what my recipient is going through.  I would like to send something to give her strength and courage to get through all of this.  Any suggestions??  Was there something special that got you through a rough day?   I can't send anything too personal since they only allow anonymous communication for the first year.  It will be a long year for her but I hope one day that I can hear her voice and see her face.

 

God Bless all of you and thank you for sharing your stories.  I hope it inspires others to reach out and help.

  • Re: Unrelated Donor reaching out to recipients....
    Djlawman Registered Users
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    You're already giving the gift of life, and hope!  There is no greater gift.  I'm sure a nice note would be appreciated.  I know all in this community thank you for your selflessness in donating to an unrelated recipient.

  • Re: Unrelated Donor reaching out to recipients....
    alisonb Registered Users
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    HI jen

    I couldn't agree more with the previous post-you have given something special already. My son had an SCT last year and without selfless people like you I wouldn't have my son with me today.

    Here in the UK we are not allowed to send anything other than a note afterwards as it can be construed as a financial inducement not sure when its  the other way round though, I think they were thinking in terms of recipient to donor.

    I sent Charlies donor a note and although I did not get a reply it really did not matter she had done more than enough.

    God bless you for the new life you have given to your donor and I hope it goes smoothly for you.

     

    Take Care

    Alisonx

    • Re: Unrelated Donor reaching out to recipients....
      jen1970 Registered Users
      Currently Being Moderated

      Alison,

       

      So happy to hear that someone was able to help your son.  I hope that he is doing well. I am so humbled to be a part of this website.  It is so surreal to read these stories.  I am nervous about the collection but I am thankful to be able to help this woman and her family.

       

      Take Care,

      Jen

  • Re: Unrelated Donor reaching out to recipients....
    khenry Registered Users
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    Being a Donor alone is hard to beat with a material gift.  Just send the card and lots of prayers and hope her way.

     

    Being a Donor is special, and I personally thank you for giving the gift of life to someone who needs it.

     

    Kristen

  • Re: Unrelated Donor reaching out to recipients....
    Amys4304 Registered Users
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    What an awesome gift you are giving.

  • Re: Unrelated Donor reaching out to recipients....
    pamd Registered Users
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    As everyone said, you are already giving it! There couldn't be anything better. Thanks for posting, and thank you for your generous gift! Your daughter should be proud fo you

     

    Pam

  • Re: Unrelated Donor reaching out to recipients....
    KyGuy Registered Users
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    Thank you for agreeing to do this!  I'm not sure what material gift you could send - nothing has more meaning than your stem cells.  A nice card with some heartfelt words will probably make her day.  I never heard from my donor and she chose to remain anonymous so I'll always wonder about her.  It's great that you're going to send a card.

     

    Take care,

    Kelly

  • Re: Unrelated Donor reaching out to recipients....
    donorgirl Registered Users
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    Dear Donor

     

    This the first time I have posted on this site but have been an avid reader of the many postings for about 2 years.

    I am a donor myself and unlike you I know my recipient, as it is my brother - he had his transplant Jan 2010 and thankfully

    he is still here and fighting all the way. Words cannot describe what you feel as a donor and I am just thankful that I was able to

    give him a chance- He was diagnosed with MDS which progressed to AML. He is still on maintenance chemo and has vidaza - for how much longer I have no idea.

    Please know that you have done a wonderful thing thing by just donating your stem cells - just the fact that you have agreed to do that is wonderful.

    I had a niece who died at the age of 23 of leukemia with AML - 6 months after diagnosis inJan 2008. My brother was diagnosed in Sept 2008.

    It was so sad to to be taken so young and never even got to BMT stage- there was nothing they could do to help her. This disease is awful, awful.

    Please know when yous say what else can you do - you have already done so much by agreeing to be a donor.

    • Re: Unrelated Donor reaching out to recipients....
      jen1970 Registered Users
      Currently Being Moderated

      Dear Donor,

       

      It is really great to hear from you and I am so happy that you were able to help your brother.  I have never met or talked to anyone that has donated.  I have only read the emotional stories of the recipients.  I am a little nervous about the procedure.   I was at the hospital today for the first 2 shots.  It burned a bit but so far.... so good!  They said they will need to put a shunt in my leg to do the collection since my veins are not strong enough.  They will try to do it all in one collection but it will take about 8 hours.  Every time I get worried, I read some of these posts and I find my strength from all the people here.  I just hope that one day I will be able to meet my recipient or talk to her.  It is an unbelievable journey and I hope it has a happy ending.

       

      Good luck to your brother - he has a wonderful sister!!

  • Re: Unrelated Donor reaching out to recipients....
    Fran Registered Users
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    Jen, you are a Godsend.  I am just starting this process, and my search for a donor will begin shortly.  One of my biggest fears at this stage, is finding a match since I have no siblings and little family.  I pray that it goes smoothly, so it's so nice to hear of a donor that could help save someone else's life going through this.  Your recipient certainly never could be able to thank you for what you're doing, but please know that feeling is beyond words for them, I'm sure.

     

    God bless.

    Fran

  • Re: Unrelated Donor reaching out to recipients....
    DebbieW Registered Users
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    Jen,

     

    What a generous gift for a stranger!!! I just read that you had the first the shots, my sister-in-law was the donor for my husband who had his transplant on 10/1, she also said that the shots burned and had some pain in her legs and back, but that it faded relatively quickly. Not going to sugar coat this as she did have a rough few days, but everyone is different and I hope this is not too hard on you. She was tired for a couple of days, but is pretty much back to her old self. As others have said you are already giving so much, your daughter should be very proud.

     

    Good luck to both of you!

    Debbie

  • Re: Unrelated Donor reaching out to recipients....
    dawnmiya Registered Users
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    Jen,

     

    Thank you for taking part in "Be The Match".  You are doing a wonderful thing and everyone on this board appreciates your selfless act of kindness.  Also, the note of encouragement is so thoughtful of you; I'm sure your recipient will greatly appreciate it.

     

    ~ Dawn

  • Re: Unrelated Donor reaching out to recipients....
    jeffsgirl Registered Users
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    Your post brought tears to my eyes.  You are giving the gift of hope and life.....to a complete stranger AND you want to know what else you can do. May God bless you for your overwhelming kindness!

  • Re: Unrelated Donor reaching out to recipients....
    ETauntonMA Registered Users
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    Thank you!  You are giving the greatest gift of all.  Without people like you, people like us would likely have no hope.  I hope I never have to have a transplant but it's good to know there are people out there liek you who offer hope.

    • Re: Unrelated Donor reaching out to recipients....
      jen1970 Registered Users
      Currently Being Moderated

      Hello Everyone,

       

      I have not been to the site in a while.  I just needed to share my excitement with you because I know you will understand.  As I shared before, I was an unrelated donor that was contact by the registry.  I had a PBSC donation on October 11, 2010 and all went really well.  (OK, I had a little help from 2 percacet because of the shunt)  So, here is the good news.... my recipient is doing well and home from the hospital.  I sent a card to her the week after the donation and I got a response today.  I felt like a child on Christmas morning!!  I just can't tell you how happy I was.  I was overcome by emotion to hear from her.  She is 54 and has 4 children and one grandchild.  She was very thankful and I am very honored to be her donor!  My Christmas wish is that all of you find health and happiness this holiday season.

       

      Take Care,

      Jen

      • Re: Unrelated Donor reaching out to recipients....
        Tex Registered Users
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        That is so very cool, Jen.  Thanks so much for sharing that with us.

         

        Kind of an early Christmas, is it?

      • Re: Unrelated Donor reaching out to recipients....
        warrior Registered Users
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        Jen

        You have given an amazing gift the gift of life to an unknown and unrelated donor. The world of blood cancers is indebted to heros like you.

      • Re: Unrelated Donor reaching out to recipients....
        jen1970 Registered Users
        Currently Being Moderated

        Hello!

         

        It will be one year next week that I was an anonymous donor.  Happy 1st Birthday, Claudia!!  May God bless us with many, many more years of health and happiness.  For me, my gift is that I become active on the registry again next Wednesday!!  Every donor is removed for one year following a donation.  I would be truly honored to match someone again.  I was actually able to get my husband to register also. If you are a donor, then you know the excitement that I feel.  If you are a recipient, then happy birthday on your new life!!  If you are waiting.... may you have the strength, peace, health and happiness until we find your match!

         

        Take Care!

        Jen

        • Re: Unrelated Donor reaching out to recipients....
          Tex Registered Users
          Currently Being Moderated

          Jen,

           

          Every time you post you make me smile through misty eyes.  It seems you now know the name of your recipient.  I hope you're able to meet some day.

           

          Thanks again for sharing your marrow with Claudia and for sharing this story with us.  That you want to do it again is wonderful.

           

          So, thank for being you.  Please stay in contact with us.

           

          Blessings

          • Re: Unrelated Donor reaching out to recipients....
            jen1970 Registered Users
            Currently Being Moderated

            Thank you, Tex.  It is so good to hear from you.  My recipient signed a card that she sent.  Although the transplant center blacked it out with a marker, my 14 year old daughter held the card on a angle by a window and was able to read the signature.   Naturally, I am a little concerned that she was able to figure that out.  I guess I should be happy that wasn't trying to lift the fingerprints with ducktape.

            I hope you are doing well and staying healthy.  If I remember correctly, I believe you had a small accident right before Christmas and you injured your shoulder.  Take care of yourself!!

             

            Jen

            • Re: Unrelated Donor reaching out to recipients....
              Tex Registered Users
              Currently Being Moderated

              jen1970 wrote:

               

              Naturally, I am a little concerned that she was able to figure that out.

               

              First thing that crossed my mind when I read it.  How do you turn and look away from that?

               

              Oh, thank God our kids are out of the house and if my grandkids know this stuff, well, it's our kid's worry not ours. 

  • Re: Unrelated Donor reaching out to recipients....
    Jarhead Registered Users
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    God bless you Jen

  • Re: Unrelated Donor reaching out to recipients....
    tranier Registered Users
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    I want to thank you.  My 21 year old son (this Sat) had a donor set for this week who "backed out"  We do have another but it pushed things back three weeks and now he has blast cells showing up again"  SO I want to thank you so much for going thru with this----everyday truly counts! 

    • Re: Unrelated Donor reaching out to recipients....
      jen1970 Registered Users
      Currently Being Moderated

      Tranier,

       

      I am so sorry for what happened to your son.  He will be in my prayers and I hope you find your guardian angel very, very soon.  I do not understand how you "back out" and walk away.  I would not be able to sleep at night.  I gladly accepted the request for donation and I prayed that I could be the one to help her.  I truly hope that I can help someone else too.  It was such a remarkable experience.... and very humbling too.  I gave to Claudia but she gave to me too!  She gave me the insight to know just how strong I could be.  She gave me the opportunity to set a wonderful example for my children.  She gave me the strength to get through some rough times because thinking about her and what she has lived with, helps me to put things into perspective in my life.  I know that she has children and a granddaughter and I think about them at every holiday.  I think about how special it is to have just one more moment.... and I smile.  So, my prayers are with you and your son.  Please know that there is plenty of good in this world and keep the faith that your guardian angel will find you.... maybe when you least expect it.  Stay strong and keep me posted.

       

      Jen

      • Re: Unrelated Donor reaching out to recipients....
        felursus Registered Users
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        You have done a wonderful thing for a total stranger, and "thank you" is far too little to say.  They did a donor search for me, and I was told that the 3 best matches on the computer list had been contacted and had gone in for tests.  In fact, I know for sure that two of them went to the hospital for tests in the middle of a horrible heat wave, and I was so touched and honored that people would go to that trouble for a stranger.  I wanted to thank them just for going in to be tested.  No one likes blood tests at the best of times.  I'm not ready to do a transplant yet, but I'm so grateful to know that there are 3 perfect 12/12 matches out there for me.  I told the RN in the transplant program that I wanted to thank the volunteers just for going in, but she said there was no way to do that - only after a transplant would I be able to thank the donor anonymously.  So in lieu of being able to thank my potential donors, I thank you as a representative of all those who have volunteered to be matched unrelated donors.  You give the gift of life - and that is the greatest gift of all.

        Karen

  • Re: Unrelated Donor reaching out to recipients....
    cincykate Registered Users
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    Hi Jen,

    I just finished reading this wonderful thread.  I missed it initially when you were waiting to be a donor.  I encourage you to continue sharing your story, whenever and wherever you can.  Many people are truly fearful about donating.  I know my brother/donor went through some uncomfortable moments but as you can attest nothing long lasting.  The concensus from donors seems to be one of feeling joy and satisfaction in helping someone live on.  Thank you for saying YES!

    Peace,

    Kate

  • Re: Unrelated Donor reaching out to recipients....
    cerfur Registered Users
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    hi jen you are incredable thank you for being a donor i just recently recived cells from a women in her fiftys all i know i hope that i will be able to contact her not sure of what the peramters are think i need to wait 6 months i here diffrent things from everyone but it is trule the greatst gift i have ever recived and i just want to thank everone who donates to a perfect stranger

    • Re: Unrelated Donor reaching out to recipients....
      Tex Registered Users
      Currently Being Moderated

      Ryan,

       

      If it's a US donor, it's one year.  Some European countries have a waiting period of two years.

       

      You should be able to send anonymous letters through your co-ordinator.  It's kind of like they show prison in the movies.  Someone else will read it and censor information you're not allowed to share.

       

      But maybe you have a teenager who knows how to get around that.

      • Re: Unrelated Donor reaching out to recipients....
        felursus Registered Users
        Currently Being Moderated

        I was told I'd be able to thank the donor anonymously via the transplant team.  I had wanted to thank the potential donors just for going in for further testing - and I know they did that in the middle of a horrible heat wave, but at the time there was no way of doing that, since they weren't seen by the transplant team - merely going in to the infusion center to have more blood draws.  I do know that they were all "locals" though (one advantage of living in a huge city).  Unfortunately, the hospital where I've been treated is not the "branch" where transplants are performed - otherwise I'd have been able to leave an anonymous "thank you" card at the infusion center.  The other "branch" is much bigger and has TWO infusion centers, and I don't know anyone there.

         

        Anyway, "thank you" seems awfully paltry when someone has given you the gift of life.

         

        I haven't been a donor of any kind, but I do know that it's nice to hear from someone whose life you affected for the better.  I've worked with people who have brain cancers, and to have a glioblastoma multiforme (GBM) is one of the worst diagnoses you can get.  That's what killed Teddy Kennedy.  The five-year survival rate is in the range of 3-5%, and most of those are people in whom the tumor is found serendipitously, is very small - so the patient doesn't have any symptoms, and is in a very surgically-accessible area.  I had a patient in her 40s who had been fully symptomatic and had had a surgical resection of the tumor.  I worked with her intesively over a 2-week period, and she was then discharged from the acute-care hospital.  The usual treatment for GBMs is resection of as much of the tumor as they can access without damaging any vital part of the brain followed by whole-brain radiation.  Although I met people who would have known my patient in the following years, I never asked about her, because although I knew what her prospects were, I didn't want to "hear" it.  Five years later I got a Christmas card from her - which she sent via the hospital.  It meant so much to me that she remembered me and thought it important enough to write to me even after all those years.

         

        Karen

        • Re: Unrelated Donor reaching out to recipients....
          Tex Registered Users
          Currently Being Moderated

          felursus wrote:

           

          I had wanted to thank the potential donors just for going in for further testing

           

          I know that the staff at many of the centers that do the harvesting go out of their way to make donors feel some immediate gratitude for the gift they've given.  I hope they do that for the people who just show up for tests but it's good you thought of that.  I've always assumed the only one who was called for further testing was the guy who ultimately made the donation.  If not, I owe a woman in France and a guy in Germany a couple of big thank yous, too.

    • Re: Unrelated Donor reaching out to recipients....
      jen1970 Registered Users
      Currently Being Moderated

      Ryan,

       

      Congratulations on your transplant.  I certainly hope that everything is going well for you.  My recipient is 53 and it was an international donation.  The "wait time" in her country is 2 years so I have another year to wait. I would encourage you to send a card to your coordinator for your recipient.  They will forward it to her.  I am sure she will treasure your card and her memories of her donation.  Just as Tex said, the donor center will read what you write and they will cross out any identifying information.  So, do not include your name or your location.

       

      Please keep in touch and let me know how you are doing.  I love to hear about all the success stories!  It helps to "close the circle" until I can meet my recipient.

       

      Sincerely,

      Jen

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