Marrow Donor, Johnathan, Lives His Life by the Words, “Be the change you want to see in the world.”

Posted June 4th, 2013 by Be The Match and filed in Donor Stories, News
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Jonathan- marrow donorEight years ago as a student at the Texas School of Business, Johnathan joined the Be The Match Registry®. Four years after joining, Johnathan was called as a potential match for a woman with non hodgkins lymphoma. Further tests found that he was the best match.

Reaction of friends and family

When Johnathan first told his family and friends what he was about to do, they didn’t really understand why he would do it. What was Johnathan’s motivation? “My son Nicholas was born with cystic fibrosis – I would hope that if someone could help him, they would,” said Johnathan. But with time and education about the donation process, his family and friends became very supportive and proud.

Two months after he got the call saying he was a potential match and the day after his birthday, Johnathan donated peripheral blood stem cells (PBSC) to help save this woman’s life.

Connecting with his recipient

A year after donation, Johnathan was able to connect with his recipient, Melissa1. Because the two lived in different parts of the country, (Johnathan in Texas and Melissa in New York) they stayed in touch via email and Facebook.

Johnathan’s second donation

Melissa was in remission for three years before her cancer relapsed.  This past May – four years after the first donation and eight years after Johnathan joined the registry, he donated PBSC for the second time.

As part of PBSC donation, donors are given injections of a drug called filgrastim, intended to stimulate stem cells, for the five days leading up to donation. The first time Johnathan donated PBSC, the side effects were “not too bad” by his standards. Johnathan described feeling weak, not having as much energy as usual. This time, however, Johnathan had more side effects from the filgrastim injections with the second donation—feeling quite a bit of bone pain and he experienced several headaches— but Advil helped his pain subside in the days leading up to donation.

Around two days after Johnathan’s second donation, his recipient, Melissa sent him an email to tell him that she received his cells. She spent a week in the hospital and then she was sent home. Melissa told Johnathan that every day she is getting stronger.

Johnathan’s message to registry members

“I don’t think they realize how good of a thing they are doing just yet. Once you get the call and you get to donate, you are a hero to at least one person – it’s the best feeling – you’re a hero.”

Learn more about PBSC donation>

Watch donor testimonials>

 

1A donor and patient may exchange contact information if the patient’s transplant center rules allow, it has been at least one year since transplant, and both donor and patient consent. 

47 Responses to “Marrow Donor, Johnathan, Lives His Life by the Words, “Be the change you want to see in the world.””

  1. John Hauck says:

    I got the call but was not, in the end, the best match. I remember feeling somewhat let down; what I would describe in retrospect as a rather selfish feeling. I really, REALLY wanted to be the one who could help another person. Two good things came out of that episode (5 years ago: A) an even better match was found and B) all my “second tier” testing has been done to better match me with a future recipient. I encourage everyone I meet to “Be the Match”!

    • Gina says:

      I was called 4 times when I was young and was never the match, but I hope someone else was. Please don’t forget to donate blood or platelets or both while you are waiting. You WILL save a life for sure, that way, if you keep at it. Also, if you donate money to add more people to the registry, you may save a life through someone else, even if you don’t know it. 🙂

  2. Islam4Peace says:

    I am waiting to hear about patient who is my potential match. I saw your article and like the comment above says, “what I would describe in retrospect as a rather selfish feeling”…I saw your article and felt like, I wish it was me who had just donated. I can’t wait to do it..but I wish even more that the patient has found a safer treatment which leads him/her to a better healthier life. That’s the only way I can not feel bad about not donating. It’s a blessing to have helped save a life! Not all are as lucky…and you’re doubly blessed 🙂
    Just wanted to say, congrats & God bless! You areee a hero! =)

  3. Susan says:

    My husband Ivan received stem cells from his brother twice. It is amazing how the process works and what a difference it can make. I encourage everyone to be a part of Be the Match. You can save someone’s life.

  4. Bryan Lambert says:

    What a great story. Major kuddos to Jonathan for his service. I’ve been doing apheresis for 10 yrs once a month–& that donation is the highlight of my month. I would jump at the chance to help another person as Jonathan did. Giving my ‘fluids’ to help another is ‘unique’ service and gratifying and sometimes hard to explain why we do it to family/friends. But, donating a part of me to help another is expressing ‘gratitude’ for my health to my god–its all a gift. I salute you Jonathan and send prayers of health & comfort to your recipient.

  5. Debbie says:

    I too was a match for a woman in Texas! A year later her and I contacted one another and not long after I flew to Texas to meet her in person. The trip was made possible by the Because I Care Foundation! Unfortunately she was rediagnosed shortly after we met. I am very close to her family and plan to move my family to Texas to be close to her family that she left on earth 6 years ago! Donation is an amazing experience and I would do it again in a heart beat!

  6. Brad Geiger says:

    I donated two years ago. It was an amazing experience and while I had similar side effects (bone pain and headaches) those were pretty minor and dissipated immediately after the donation. One very positive effect was the overwhelming support and kindness of all the professionals involved in the process. Every tech, nurse and doctor expressed their apreciation to the point I was almost embarrassed that my part of the process was so easy.
    Because the recipient was overseas the laws prohibit us having any contact. That is possibly the hardest part of donating, not knowing if it made a difference. I had to make my peace with the idea that I had done all I could do and the rest was out of my hands. Some days I do wonder….

    • Jeff Schnirring says:

      I ditto that Brad, you do get treated extremely well like you are a hero and I too felt embarrassed, our part was not bad at all,5 days of a little discomfort compared to what the patient is going through is nothing, I donated June 6th as I called it D-Day for donation day and it turns out D-Day really was 6/6/1944. My recipient also is out of this country, not knowing is hard but like you said we did all we could and the rest is out of our hands, and YES I would do it again in a HEARTBEAT…

  7. Adam says:

    I was the bone marrow donor for my brother. He was diagnosed with a deadly form of Leukemia in 2011. I was a 100% match to him and he has been in remission since June of 2011. I am proud to be on the donor list and will gladly step up if ever called again. There is no greater feeling in the world than knowing you helped save someone’s life.

  8. Michelle Ferguson says:

    I don’t understand people who question “why would you do that?”. My question to them is “why wouldn’t you?”. Makes absolutely no sense to me why something as simple as donating blood, marrow, cells, or even your organs at death is such a big deal to people. You can have my physical body. My soul belongs to God!

    • Vicky says:

      I agree Michelle… “Why wouldn’t you?”
      I love reading these stories of people who help others. It continues to restore my faith in humanity when so many other things in the world are going wrong.
      I have been on the donor list for about 3-4 years now. I have not received a call, and am aware I may never… but I’m proud to be on the list and will step up in a heartbeat if ever asked.

  9. Jen S. says:

    You are a true hero Jonathan! I am currently waiting to find out if I am the best match for a patient in need. I could relate to your story about telling family and friends. I was so excited just to find out that I’m a potential match, I started telling a few people and was let down with the responses I received. I decided not to tell anyone else until I find out for sure. You story was encouraging should my journey go further. Thank you for sharing and I wish the best for you and Melissa!

  10. Patrice says:

    What a a great story, Johnathan…thank you for sharing! I was fortunate enough to donate marrow to a 12 year old boy in Germany back in 2001. Unfortunately, the patient only survived for one month, maybe because I was approached only after all other options had been exhausted. I was able to send an anonymous card with gold sunshine confetti tucked inside to accompany the marrow that was flown from the US to Germany, and feel blessed to have received a stained glass sort of picture from the patient through the registry, which he hand colored as he was receiving my marrow. Along with this picture, he sent a card with a type written note stating that he hoped we could one day meet. In the center of the picture, he had glued one of the gold sunshine confetti pieces!! I have it framed and will forever keep it dear to my heart! I was called one other time about 3 years later, but didn’t prove to be a close enough match. I await anxiously for this opportunity to present itself again…I would do it in a heartbeat!!!

  11. Ginger Sanborn says:

    I joined Be the Match a few years ago. One year ago, my son was put on the transplant list for a (kidney/pancreas) transplant. His blood type is (O), so his wait for a doner is three times longer than normal. All I know is that I will be eteranally grateful for the person who checked yes under donor, and/or the family who shares the gift of their loved one no longer with them. I may never get to be a donor, but I know I took the first and symple step of joining. God Bless everyone on this registry.

    Ginger

    • laura galvez says:

      I signed up on be the match marrow and it was so easy and im hooing one day to be the match for someone in need. I also signed up on the national kidney registry but because i dont have insurance i am unable to complete my application which is aggravating me. I am o- blood type does anyone have any ideas i would love to be able to help someone.

      • Ginger Sanborn says:

        Hi Laura, you are a universal donor and that is amazing. Usually the person receiving the donation’s insurance pays for everything but you would need to have a particular person. Our last resort is a live donor as seperate donors means they can only check one organ for rejection and with our a new pacreas the diabetes would just kill the new kidney. I wonder if you were to check out the “National Kidney Registry”, they may have a fund for that portion. So many people die before receiving a Kidney due to the tole dialysis takes on the body. I hope you can find a way to give your amazing gift.

        • laura galvez says:

          First off my heart goes out to you and your family and i will keep you in my prayers and u want to say thank you for your response. I did contact the registry and was really dissapointed by the information i received i was told alot of hospitals have backed off from useing donors who are uninsured because of POSSIBLE undetected health problems they already have and he also stated uninsured persons who donate have problems later on he said he was not trying to change my mind only wanted me to know all the info but after listening for awhile i told him it did not matter i still wanted to do this,he then said he would send my information (not having insurance ) to atlanta hospital and that they may or may not call me.
          Im really DISAPPOINTED ….but i won’t stop trying…

  12. Bill King says:

    I have been in the registry for over 25 years and never recieved a single call. I have made money dontations each year. Im sure it works, but my match has never been made.

    • Trina Bruce says:

      I’ve been on the registry over 20yrs and got “the call” last week. I’m a match for a 13 yr old girl. I will need to do the bone marrow extraction instead of the stem cells. I hear its extremely painful but my excitement over helping her out weighs everything. I’m told you stay on the registry for life, so hang in there.

      • Lori G says:

        Trina,

        I donated bone marrow through extraction in 1987 to a little boy from Maryland (before the National Bone Marrow Registry was in existance). It really wasn’t as bad as it sounds. I was asleep through the whole thing. When I woke up, it felt like I had been kicked in my backside or falled on my butt. Over-the-counter pain relievers was all I needed and that only lasted a day or two. You will be doing a wonderful thing.

        Oh, my recipient is now 32 years old and owns his own computer repair business. You will be fortunate if you are “the” matchz!

  13. Susan says:

    Johnathan, What a blessing you are for donating twice. I know that the personal rewards that you must feel are are better than just about anything. You, one person, made a difference in not just one young woman, but in her family and everyone that you will both touch in the future. I was blessed to have donated 22 years ago. The family’s heart felt thanks was that my stem cells were able to provide him and his family HOPE in their time of need. We never got to meet, however I treasure the silver heart box he sent during his procedure and the picture of him and his daughter that I received from his family after his passing. Who would have known that a few years later my son would undergo a stem cell transplant as well. What hero’s our patients are. Our contribution is very small compared to their bravery. I would sooooo donate in a heartbeat anytime.

  14. Tracy Sutton says:

    My daugheter, Shelby, was dx with Chronic Leukemia (CML) on March 2010 and upon dx was admitted for 3 weeks to the Vanderbilt’s Children’s Hospital. We had wonderful care. We were so releived to hear our Prayers had been answered by an unknown donor from over seas when contacted by the Transplant team regarding The Bone Marrow transplant which did take place in July of the same year with wonderful results. She has been in Remission now for 2.5 years and has been able to graduate with her high school class and is now a full time College Student with 2 years under her belt. She is such a Blessing to our family and such a Strong Young Christian Lady I am Proud to say i am her Mother. After 2 years we were able to get the name of our Donor and will be contacting him soon. As for myself i have signed up to see if i can pay this forward and try and help someone else in need. May God continue to Bless our Family and all those who are/or have suffered with these dreaded diseases.

  15. Kay Shore says:

    I am waiting now to see if I’m the best match for a 66 yr old gentleman. Lets keep our fingers crossed and if its not me that means there is a better match and I will wait for the next call. I have been on the registry since 1992 and got my first call last week!

  16. Jack says:

    I found out that I was a potential match for a patient a week before I found out that my own dad has leukemia. I ended up not being the closest match for this other patient but now my dad will likely need a donation. I just want to thank all of you for doing something so unselfish and amazing. I hope that my dad’s transplant gives him several more years with his 4 children and 13 grandchildren.

  17. Jenny says:

    I joined 15 years ago while in High School so I was quite surprised to hear I was a potential match. It turns out I am his match and the transplant is scheduled soon. When I first received the email and call it most certainly took me by surprise but after discussing with my husband the only question we were left with was ‘How could I not?’ I applaud you Johnathan for your very unselfish act of giving twice now!

  18. Michelle says:

    I joined the registry while I was in college, not long after my former roommate had been diagnosed with Non-Hodgkin’s Lymphoma. I was not a match for her. We were in our early 20’s and it was hard to see a friend who had been so healthy and active become so sick. She never found a match and she tried (back then experimental) autologous-Bone Marrow transplant. Her first round was a short success placing her in remission for a short period of time. Upon relapse, she became too sick to try again. It was in her honor that I proudly joined the registry in 1995. I received my first and only call 3 weeks after the birth of my first child in 2000. I was concerned with my recent delivery, that I may not even be considered, but they brought me down to the Blood and Tissue center and collected the vials of blood samples required to work me up for my potential recipient. I was so excited and ready to help someone in need, in honor of my friend, AnneMarie. I remember how disappointed I was to hear I was not the best match for this patient. I have not been contacted again, but I know when/if I do it is likely it will be “the match” since my ‘second tier’ testing has already been performed. Each month I receive my email newsletter, I open it immediately in hopes it might be my turn to help.

  19. Rosangela Smith says:

    Hi Jonathan, I joined the Be The Match about 4 years ago when some recruiters went to my Church. Last year, I got an email saying I was possible a match and they wanted to do some test. I was very excited for the opportunity to help someone, but at the same time a little scared. Unfortunatelly, the little girl wasn’t ready for the donation last year, but about a month ago I got the phone call again saying that I was being requested to be a donor and for my surprise I found out that it’s the same girl from last year. So, I’m waiting for them to schedule the procedure that should be happening sometime next month. Your story really touched me because some of my fears are now gone and I can’t wait to help this little girl to be health and free of this sad disease. Thank you so much for sharing.

  20. Kelle Doucet says:

    Hey Johnathon, I too am a donor. I was notified in 2003 that I was a match for someone who was from another country with multiple myeloma. After many blood test and a physical, I was notified that he did not achieve remission and I was put back in the registry. I was then notified a month later for a 16 year old that had AML and he required a bone marrow donation. I did the whole bone marrow aspiration and was told 4 months later that he had relapsed. I was willing to give again, but he had chosen that the 20% survival rate was just too low for him to go through the hell again. In December of 2004, he lost his battle with AML, but I am always willing and ready to give for others. So glad you were there for your recipient!! God bless.

    • Laura says:

      Gosh it breaks my heart to hear of children with Cancer. Yet they are usually the strongest even when times are hard or they know they wont make it. It amazes me!

  21. Karen says:

    I enjoyed reading your story. I too was a match for someone. I just had my surgery one week ago. All went well After a overnite stay at Mass General Hospital in Boston. The team of doctors n nurses were amazing. I’m tired an a bit sore in my back but not to uncomfortable at all. I went back to work on Monday. Now the waiting to find out how the recipient is doing. I can’t stop thinking about him. Lots of prayers being sent to him.

  22. Susan S. says:

    Wow, what amazing sharings!! Thank you, Jonathan for your double donations. Your selfless givings and courage eased my worry of being a potential donor. I’m petrified of being called, but from hearing from donors, the pain is pretty minor comparing to the victims of cancer. I’m been registered for over 10 years and haven’t been contacted yet. I am willing and waiting for the match. May God you and Michelle.

  23. Karen B says:

    Over 20 years ago I was the best, but not perfect match for a 45 year old. He chose not to go that route, but I still gave him a precious gift, the choice.

  24. Debbie says:

    Congrats Jonathan! I was called about 2 years ago, after being on the registry for over 12 years, after my dad passed from AML in November of 1998. I went in for the follow up and found that I was indeed a good match. I was waiting for the patient to get strong enough to receive the cells. Unfortunately, that time never came. I had that extreme sense of disappointment of not being able to help in time. I continue to be on the list, and willing and able to help anyone that I can! I hope others will do the same.

  25. Katie Johnson says:

    My son has been identified as a match for a patient. After follow up blood work and an extensive physical, he has been cleared and has received his donation date. He begins injections 5 days prior to his donation date. We are all very proud of him for is willingness to go through this process. He is a very generous kid with a heart as good as gold. I am thankful for this process and that my son can help out another person. Godspeed to the recipient, you will be getting your donation from a great kid.

  26. Traci says:

    I registered a few years ago when my son was 6 months old and had just been diagnosed with Histiocytotis. So when he need a transplant at 2 years old, I remember waiting to hear who was his match. I remember my 4 yr old daughter crying because she wanted to be his hero and didn’t match him. And I remember the call that they had a donor. I was in the laundromat and I fell to the floor in grateful tears. My son turns 5 in 6 days thanks to a donor whom we have finally been able to thank. His donor is not only our hero but we count her as our blessing and our miracle.

  27. Liselle Lathroum says:

    God bless you and all your loved ones!! My aunt has also been a CA survivor twice the second time due to the meds used the first time!!! Although none of us were matches for her thanks to people like you she has BEATEN ALL THE ODDS (which were against her) and is stronger. She as well us, her family, are happier than ever (specially me as a doctor, who has had to live next to many CA patients and their families)!

  28. Al says:

    I joined ‘Be the match’ over 20 years ago and have never been called to donate. I patiently await the day I can help someone in need. In the mean time, it is so nice to read the stories of others who have already donated or are also waiting to donate. God bless you all. It does the heart and mind good to know you are all out there willing to help.

  29. michelle says:

    I was a bone marrow donor 2.5 years ago. From the minute I received the call that I was a match it was a wonderful experience. The recipient is doing well and we have met and have become “dear friends.” I would donate again in a minute. It saved her life and changed mine forever.

  30. Laura says:

    My mother is the same way Jonathan’s family is. She doesn’t understand why I would want to do something like that. My motivations are the same as Jonathan’s, I feel like what if it were my child or my family that needed it. I would hope someone would help them too! I have been registered for just over a year and I feel the same way – I can’t wait to help someone! I just don’t understand how people can NOT want to help others!

  31. Jude says:

    Please know you are all so important to join the registry’s database – I got a call last year and ended up not being needed for a man. Came close to being a donor in Massachusetts – even though this did not happen, maybe I will get the call again? But you in the registry’s database give hope, real hope, to real people and may save a life. I know I’d do this if/when needed.
    Thanks to all of you, you give me hope reading your messages. Good health to all .

  32. David Frye says:

    I have been on the Donor List for about 10 years now, I was contacted in December 2009, that I was a possible donor for a 12 year old boy. I didn’t have a clue if he lived in the United States or elsewhere. After going through a couple of tests, I was about to go in for the Donation. I was contacted again and informed that I was no longer needed, I hope that it turned out OK for the patient.

  33. Jr. Pinson says:

    To give you a different perspective, I was diagnosed with AML with MDS 1.5 years ago. So far 2 matches have been found, but they are not close enough. I continue to have 7 days of chemo every 28 days while waiting for that perfect match. If you are on the registry, you are already a Hero!! God bless each and every one of you.

  34. sasha says:

    That’s really a great feeling to be a hero in some ones life for real. You did a great job by donating PBSC.

  35. diane says:

    I get sad on my birthday because it means i’m another year closer to aging out of the registry. reading these comments helps me feel better. thank you to all.

  36. Sandra Rodriguez says:

    Our coordinator is currently searching for a donor for my husband and it brings much joy to my heart to read all your comments and willingness to help! God bless you always!

  37. Johnathan says:

    wow! This is Johnathan from the story, this is the first time i have looked at the page since it was published and reading all your kind words brought tears to my eyes, i hope everyone realizes that i gleam with happiness and humility, anyone can do what i did, and i encourage everyone TO do what i did. of course most people on this page are already on the registry or know someone who is, but i wish i could inspire more people to join. if they knew the warmth you feel inside from helping someone who you may be the last hope for… its indescribable.

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