Rock Center
Jordan Flynn, the teenager featured in Rock Center’s report about her family’s fight to overturn bone marrow donor laws, recently received a bone marrow transplant.
Courtesy of Flynn Family
Flynn and her two sisters, Jorja and Julia, suffer from Fanconia Anemia, an incurable blood disorder. Jordan received a bone marrow transplant on May 8. In her online journal, Jordan’s mother, Doreen, described the transplant as a “re-birthday to my beautiful daughter.” Jordan’s blood counts have continued to rise, evidence that Jordan’s body is accepting her donor’s stem cells.
In her most recent posting from earlier this week, Doreen Flynn wrote, “Today’s counts showed Jordan's platelets have soared to 246,000 which is fabulous! We had one fabulous donor!!”
Courtesy of Flynn Family
While Jordan has made remarkable progress and was officially discharged from the hospital last week, her recovery hasn’t gone without complications. She spent her 14th birthday this week back in the hospital, but was released the next day.
“I just realized that as I write this it is technically Jordan's birthday! Happy birthday to my beautiful girl who has taught me strength and to be a fighter! You are one tough cookie and up you are my hero!!,” Doreen Flynn wrote in her online journal.
Despite the ups and downs, Jordan’s fighting spirit has remained firmly intact. Sporting pink hair and a smile, she recently skyped with her classmates to celebrate her eighth grade graduation.
Editor’s Note: Click here for more of Dr. Nancy Snyderman’s report, ‘A Mother’s Fight.’
Rima Abdelkader contributed to this report.
The medical community expects to be paid, sometimes in multiple fees, and sometimes with a 1000 % mark-up! It is time the donors are paid something too. Bone-marrow, blood, and other donors should be compensated!
Can you please post the address of the web site for volunteer donors?
There you go
WWW.BETHEMATCH.ORG
I was a marrow donor almost 2 years ago. People need to know how easy and safe it is now. I have helped with many marrow registry drives and when people understand they are more willing to help. go to www.marrow.org (that is the Be the Match, National Marrow Donation Program site) you can register and even see vidoes of donation types. Informing people is key! If other donors would speak out, more people would register and more lives would be saved!
As a mother of 4 children my heart aches for this mother. I am not sure how to go about it, but I would like to see if I am a match for her daughters. Is there someone to contact regarded how to test for her girls? Thanks so much :)
The best way would be to just get tested and put into the system. If you aren't a match for her kids, you could be a match for someone else, and that's better than nothing at all. This is the site with information on donation.
Why not enter the bone marrow registry and see if you're a match for anyone? There are lots of other heartbreaking stories just like this one. :-)
I've been on the Bone Marrow transplant registry for many years but not called. I'll gladly give when notified. Who would not want to donate something for free that could save someone's life? What could be more noble than to help save someone's life?
I agree, it seems easy enough to donate for the nobility. But if your job is not allowing you the time off, or you are unable to get transportation, Some type of compensation may be needed. For some even money to pay a babysitter for the hours you will be gone during donation could be important. Other medical situations give gas cards with a free first time visit. And pay participants in medical trials. I don't think we are talking thousands of dollars as for egg donation, or surrogacy. Perhaps even lower compensation than for sperm donations.
Does anyone know if donating your marrow requires you to travel? or Can the marrow/platelets be shipped from the nearest hospital?
Doreen is not a single mother. She's been engaged for quite a while to a contractor with 3 kids of his own who's currently staying home with all 7 kids while Doreen is with Jordan.
The girls’ father, his family and fiancé are also highly involved. All of the
children have a ton of support and a big family who love them.
I am not sure who you are, but maybe you should find out the facts before you post something for the world to see. I am Doreen's twin sister, and no, Jordan's Dad is not HIGHLY involved as you put it. This isn't the place to get into it, but you could not be further from the truth.
This is for It's just Kevin. I am the girls mother and first off would like to straighten a few things out. I don't make a habit of bad mouthing anyone but to be quite frank Jordan's father is not highly involved as you put it. Jordan did not see her father for nearly a year before her transplant and he all of a sudden showed up at the hospital. I'm not sure where you are getting your information. His fiancé is also not highly involved. As for the insurance paying all Ronald McDonald costs that is also not true. I pity your naive ness as I'm sure you are only being fed these lies straight from the horses mouth. He is involved in the younger three's lives that I will not dispute. When his oldest son was sick in the hospital last year for three weeks he came to visit twice. I just wanted to set the record straight. My fiancé has been a huge part in their lives and has been a tremendous help throughout this difficult journey.
I would like to volunteer to have my bone marrow tested... I'm a father and want to do this... I DO NOT WANT ANY COMPENSATION... I will get my compensation in heaven...
I have a rare genetic condition and it's unimaginably painful but I would step up and help these people. I would be more than willing to donate my bone marrow with or without compensation.
Doreen is not a single mother. She's been engaged to a contractor with 3 kids of his own who is staying in Maine with all 7 kids while she helps Jordan in the hospital.
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I have been on the bone marrow registry for 25 years since my dad died of leukemia and I have never been contacted as a match. I can't believe that I've not matched someone in all that time. I am very willing to donate and I hope that before I get too old that I will be able to help someone with a bone marrow transplant. I was very shocked to hear that 50% of the people don't show up when they are scheduled to donate. Everyone should put themselves in the shoes of parents praying for someone to come forward to save their child's life.
I use to donate plasma and was compensated each and every time, donating stem cells is no different there is no reason it can't be under the same program with nation wide donating centers that compensate for your time and effort not your product. Change the law now.
I would love to help this family, I just wish I knew who to contact.
The only thing the family needs is people to sign up to become a donor. So, the way to help is super easy... visit www.bethematch.org and join the registry for free :o)) AND PLEASE SPREAD THE WORD. Really thankful for people like you who care.
Where can I donate and how often?
While bone marrow donation may save lives, this piece of journalism was EXTREMELY biased. You failed to show the true steps that a donor must take to donate bone marrow.
For 5 days before the donation the donor must take a drug called Filgrastim. The side effects of this drug are: bone pain, muscle aches, headache, fatigue, nausea and vomiting.
If the veins in your arm are not able to accept the catheter, then you need to have a catheter put in a vein in your neck, chest or groin. Complications that can occur include air trapped between your lungs and your chest wall (pneumothorax), bleeding and infection. You could develop an embolism that could travel to your heart, lungs or brain; you could have a lowered immune system.you might feel lightheaded or have chills, numbness or tingling around the mouth, and cramping in your hands.
This information needs to be relayed to the public also, so that they can make an informed decision.
Thank you.
Indeed these and other risks should have been included in the report. I had no idea. I'm certain that with my medications my doctor would deter me (and many others) from being a donor. This could in fact impact those numbers of 50% "backing" out. Our family thought we may all need to get tested for a family member. Thankfully that wasn't needed. We would have had a simple swab and been placed on the list. I would think many people would accept these risks for family without intention of donating for anyone.
Rock Center should have stated "like with any procedure there are risks"
I was a stem cell donor 5 years ago for my identical twin. I was the only person on the planet who could donate stem cells that would not cause host vs. graft problems and would save her from having to undergo what they call a tandem transplant. Believe me, one stem cell transplant is a harrowing experience (I was the caregiver and was present throughout the 5 week hospital stay). The tandem transplant would mean that she would have to undergo a second transplant on top of the first one! Yes, the veins in my arms were not suitable for the stem cell collection and they had to insert the catheter in my groin. And I risked the complications mentioned in the post. The shots mentioned in the post don't present significant problems.
But my sister is in remission and it was a very small price to pay. Still, potential donors need to know the facts presented in Magoo's post. You also need to know that the person who desperately needs your stem cells is depending on you. In most cases, they face chemotherapy that destroys their immune system. Your stem cells rescue their immune system and, hopefully, allow them to replace diseased blood with healthy blood. In the days and weeks that follow the stem cell transplant, the patient faces trials that you can't imagine. The chemotherapy lays waste to the intestinal tract, pneumonia sets in, blood clots and kidney failure cause additional severe complications. It is a miracle that people survive and recover. It's not for sissies. But it's worth it. Really worth it.
My son Justin is registered with the Department of Defense (DOD) (he is USAF Reserves) to donate bone marrow. He was called up earlier this year as they found he was a match to someone in need. He did not hesitate to help another in need (I'm so proud of him). They flew him up from Florida to DC to perform initial tests, then once approved, flew Justin and I there for a week. They paid for the airfare, lodging and the meals for both of us and provided transportation to and from the donor center. Justin loved it because he could spend a week in DC and explore (which they recommend to keep moving). I was just a concerned mother...even though he is pushing 30. He had to go every morning for 5 days to have a couple shots in the arm, then was good to go about the day as he wanted. Yes, he got a little sore but he's a walker and he was loving exploring DC so he did ok. Then the final day he had to spend less than 4 hours basically giving blood. The person he donated to is now doing well and on the road to recovery from what we're told. It doesn't get much better than that! To know that you saved a life. He knows that if she later has issues, he's willing to have the surgery if necessary. He received no pay but he was happy to at least get paid for the expenses. Does this operate differently outside of the DOD? I do agree that more people may step up if they got paid. As the reporter noted, if you can get paid for other things donated or medical services rendered, then why not marrow. It just doesn't make sense. If they are worried about the quality of the donor because they are getting paid, that's what tests are for. If you don't pass the test, you don't get paid.
I'm so glad this effort is underway. I think a lot of people don't realize how easy it is to give marrow now (it is just like giving blood) and how many people die because they can't find a match. FYI, information on signing up for the volunteer donor registry can be found at www.bethematch.com.
To those of you saying you would like to help this family - please realize that that joining the bone marrow donor registry in general would be much more helpful. There are so many other people in this exact situation! The chance of one individual's HLA matching a specific unrelated person is very low - but there is a much better chance of matching someone out there who will die without a bone marrow transplant.
About 16,000 men, women and children are searching for a donor at any given time. This woman is trying to change the law to help everyone, not just her daughters. Hopefully people will understand that the take-away message is the importance of being in the registry and willing to undergo a simple process that will save someone's life. Not just these two little girls. My story would break your heart, too.
I agree. Joining the registry is the best way to help.
This family is blessed in that they incur no medical fees seeing as insurance is provided to the children by their father. The mother’s meals are covered by insurance, as well as their long stay at the Ronald McDonald house. There have also been several benefits in honor of Jordan to help cover other financial responsibilities. The family is able to focus on Jordan's recovery now that their financial burden has been alleviated due to generous benefactors. This family is loved by all who cross their path.
I'm not sure who you are Kevin but your facts are not truthful. Their father is not the only one who carries insurance and the Ronald McDonald House is not covered under the insurance nor is the cost of the meals there. How can you say a family's financial burden has been alleviated when you don't even know their true situation? There has not been several benefits as you put it for Jordan. There has been two. Again, not sure where you are getting your information but it isn't factual by far and very untruthful. There are even some medications the insurance isn't covering 100% so there is out of pocket expenses with that as well. So please stop talking about how much you think you know about my family!
I'm sorry to say that this report seemed slanted in favor of paying donors. I think the issue is a little more complicated than reported. One concern is making sure that the donor is truthful with their health history to ensure that the marrow is healthy. It may be hard to trust this important step if the donor is being paid. The report also failed to mention that donation, even through apheresis, is not really that easy. It involves lots of blood work to make sure that the match is perfect and injections in the days preceding the donation. These injections are not without side effects and risk. Also, if the marrow can't be harvested through apheresis, the donor will need to undergo surgery to harvest the marrow. That being said, I wish more people were aware of marrow donation! My daughter was lucky to be a donor several months ago through Be The Match and it was so great to be a small part of a process that may have saved a teenager's life!
Michael Boo thinks that offering compensation to bone marrow donors is the moral mountain upon which the country should die. I wonder if he would feel the same if Jordan Flynn were his daughter.
My son is registered with the Department of Defense (DOD) as he is in the USAF. Earlier this year he was notified that he was a match for a person in need. He did not hesitate (My Hero and probably her's too). They flew him from FL to DC to have tests on their dime. Then when approved, flew my son and I from FL to DC for a week, all (reasonable) expenses paid. My son loved this as it gave him a chance to explore DC. Yes, as magoo2 stated, he had to go every morning to have shots for 4-5 days (can't remember). Yes, towards the end of the week he really started to feel it but by walking, staying hydrated and staying busy during the week, helped alot. If you're going to lay around all day watching tv and reading, you're going to feel it much worse. From what I understand, referencing magoo2's comments, having to have a catheter is not so common. As with any procedure, there are those times when what has to be done is not optimal. At least we have progressed to a point that in most instances, you do not have to go into surgery and dig into the bones like in times past. It's really not much different than giving blood. The person he donated to is now doing better from what we hear and if they do have to dig into the bones, my son is willing to go back again. He's a good man! I do believe they should compensate donors. Maybe there would be more that would step up. If people are worried about the quality of donors because they are getting compensated, then that will come out in the preliminary tests. If you don't pass the tests, you don't get paid. I agree with the reporter in that if people get paid for donating other medical services, then why not this. Don't push back the willing. Who cares why they are willing as long as they are willing. I really just think that there needs to be a media campaign to inform people that it's no longer a surgical procedure, just a period of time and if nothing else, that period of time should be compensated under general expenses. What are we as a nation if we cannot give back to our nation and its people in any and every way we can?
Unfortunately, this story was very slanted in favor of compensating donors. What the report failed to mention is that a complete medical history is taken of the donor to ensure that the marrow will be safe. It is hard to know if people will be truthful about their health history if they are being paid.. Also, as some have noted donating marrow, even through aspheresis, is not the same as donating blood. It is a lengthy process with multiple medical exams, blood draws, and injections in the days preceding the donation process. The injections are not without side effects and possible complications. Also, if the marrow cannot be harvested through asphereis the donor will need to undergo surgery. That being said, my daughter was lucky enough to be a match and donated marrow several months ago. It was great to be small part of a process that may have saved a teenager! What could be better? For those who are interested check out Be The Match to register...but make sure you are ready and able to follow through...
I applaud your daughter for having the heart, soul and strength to donate!!
You raise some very good points. Onen of my concerns is that paying donors will lead to even more of a black market in organs than exists already (thankfully so far not so mucn in the U. S.).
A good recent article about some dilemmas on donation can be found:
I also applaud your daughter.
For the record donors aren't being paid, they are being compensated in the form of a scholarship or housing stipend or a donation to their favorite charity in their name. The donor never sees the money.
My heart goes out to this Family as my little Brother had this very disease we lost him at 14, we were un able to find a bone marrow match for him. We traveled to St. Jude, and others hospitals to see different Doctors for their outlook and knowledge on the disease. If at anytime the Flynn family would like to talk with myself or my mother she can contact me at this email address robertps@centurytel.net and I then can give her our number.
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My heart goes out to these girls. And I will pray for them. I have three of my own, and am a single mother. But, I lost my father at the young age of 54 as he waited for a lung transplant. So, I think if this law passes to compensate donors. We need to pass the same law for family members of deceased family members to donate organs..
Speaking as someone who has recently had a bone marrow transplant because of Fanconi Anemia and depended upon a donor to follow through I completely support compensating donors. Compensation would greatly reduce the number of donors who back out. I had a friend named Edwin, who was Hispanic, and was unable to fine a match in he registry so he used a half match- his mother. He died from a post transplant infection. Compensation would give incentive for people from many ethnicities to donate.
People are compensated for donating sperm and eggs which are then used to create life! I dont see an ethical problem with compensating someone for saving a life!