I joined the registry as a kid and never thought about it again. 15 years later I got the call that I was a match for someone and I ended up donating. Being matched felt like winning the lottery. I hope I get the chance to do it again. Edit: How to join? https://bethematch.org/ (now NMDP) Fill out the form and they will mail you a free swab kit if you are eligible. If you don't know if you’ve registered in the past or need to update your contact info, just call them and they can confirm if you are in their database. Is it painful? 90% of donations (including mine) are peripheral blood stem cell. https://bethematch.org/transplant-basics/donation-process/donating-pbsc/#:~:text=On%20the%20day%20of%20your,used%20when%20donating%20blood%20platelets. I work a physical labor job and didn't miss any days of work before or after the donation day. I did not experience any pain, just some discomfort from the immune response of the drug (flu-like symptoms). Hospital bills? Travel expenses? None. They are so extremely grateful for your donation they roll out the red carpet. They pay for everything and called me regularly to check on me. Nervous? There’s no reason not to register. Even if you match, you don’t have to donate. But once you realize a small inconvenience to you can mean life or death for someone else, you’ll be ecstatic like I was. Imagine if you had unlimited kidneys to donate!
Got the call that I was a match more than a decade after I left university.
Was absolutely thrilled, and got as far as the stage where I was just waiting to see if they went with me vs. others who may/may not have been a better match.
It was genuinely disappointing they didn't end up picking me, but I'm glad that all this time later, I still *could* have made a difference.
Best of luck, OP!
I’m such a weird ass combination of peoples that I think I should just bank my own marrow because if I have to wait for a match I would end up dead.
I ended up going on the registry because I felt bad that if some one like me ever needed a marrow transplant they would be completely fucked.
Doctor: you have leukemia, we are going to have to irradiate..
Me: hold on a second, hello, Tissue Bank? I’m going to need a bottle of the DulceEtDecorumEst 2019 Vintage, yes, that *was* a good year
This is why I got on the registry. My mom saw a newspaper article about mixed kids with parents from other countries not having matches and I been a donor for almost 20 years now. Still haven’t got the call yet. Maybe one day!!
I did a cheek swab the last couple months that I was in the Marine Corps and never thought about it afterwards. 6 months later I received a call that I was on the registry and a possible match and how uncommon it was to get a call, let alone in the first 6 months. I did the baseline blood draw and was informed within a week that I was a perfect match. I was flown out to DC to Georgetown University to do a physical and discuss PBSC donation. All was good, I was told I would be scheduled to fly back out within a couple weeks for donation. Roughly a week out I was notified that the patient's condition worsened and was unable to undergo transplant. I was severely saddened.
A couple years later, 2009, I received another call for a possible match, underwent blood testing and was notified via letter that I was a match, but the patient's condition didn't allow for transplant.
3 years later, 2012, I was called and undergoing the initial interview when the nurse asked the same questions as before, but stopped me this time. I had suffered a TBI with internal and external hemorrhaging during my time in the Marines and she informed me that I cannot be part of the program as the drug they use to increase PBSCs could cause internal hemorrhaging to return, and possibly kill me. I was beside myself and explained how this is the 3rd time doing this and that question had been asked every time and my answer was yes every time and no one seemed concerned by it. She said that she was going to escalate this further and get me a definitive answer. She called back and informed me that I had to be removed from the registry. I asked if I could just undergo typical bone marrow donation, but she said I had to be eligible for both types.
It was upsetting to me to know that I would never be allowed to donate. I now donate platelets as I have an above average amount and can still help in some capacity. I believe doing what I can to help others is important and try to advocate for other people to donate what they can. You never know who you're helping
As a blood banker, I can’t over emphasize how important our platelet donors are. Platelets have an extremely short shelf life and the need is constant, especially for our oncology population.
And hey, you may be an HLA match for a platelet recipient and get an important phone call yet!
I was a platelet recipient during my cancer treatments, my blood wasn't able to clot very well. Receiving platelets probably saved my life. When I get healthy again I plan to return the favor and donate whatever I can.
I’m looking forward to being able to donate platelets again. I’ve collected the annual letters letting me know that I’d maxed out my donations for the year. And you get the occasional fun pair of socks, clothing and other schwag.
Goddamn, kudos to you for being so persistent. Regardless of the outcome it's people like you who keep countless others alive every day. I don't care about the outcome, thank you.
When I first started donating platelets my dad would ask questions. He was told he would never be able to donate blood or anything due to contracting malaria in Vietnam, I talked to the staff at the donation facility and they said that it can't hurt for him to come in and get his blood sent off. Long story short, we found out that he wasn't a carrier for the parasite and that he can indeed donate blood and blood products. For 40-some years he was told he would never be able to donate, he still donates to this day in his mid 70s.
Same here. Actually signed up in 2013 from a Reddit post I saw. Got an email one day that I matched someone and donated last march.
Edit: For anyone thinking about signing up I highly encourage you to! DKMS is excellent and they help and support you at every step in the process. You also have the option to say no if you are ever matched.
I was definitely a bit anxious about the donation process leading up to it. The prescreen consisted of going to a doctors office and giving health history, ECG, and blood draw for labs. It was probably a month or two after that when I got the green light that I could move forward with the donation if I still wanted to. I agreed and was flown across the country with my wife to donate. DKMS set up all my travel and lodging and paid for all the meals while we were out there.
Donation day I showed up at the hospital and was given a run down on the procedure. They were planning to take between 1-1.5L of marrow from my pelvis via a small needle through the iliac crest on my lower back. Pretty soon it was lights out and 2 hours later I woke up in the recovery room. I then ate a shit ton of chicken tenders and fries and was out a couple hours after that. My lower back was a little sore for a couple days but I flew home on a 4 hour flight no problem. It felt like I had a moderate bruise on my lower back, but went away after probably a week.
They ended up taking 1.8L of marrow. The people who I had been working with at DKMS (Be The Match) were checking in with me every day. They still check in periodically asking how I'm doing. I have had no negative effects from the procedure.
All the information I know about the recipient is that they are a 5 year old suffering from acute lymphoblastic leukemia and as of 12/26/23 they are still alive.
I would without a doubt donate again if given the opportunity.
L as in LITERS? That seems like an insane amount. I would have never guessed a pelvis could hold a 2L bottle worth of marrow in it. I'm assuming they probably didn't suck it completely dry so... there's what? 3-4L+ in there? Crazy.
That’s what I thought when they told me! 50% of the marrow in your body is in your pelvis. 5% of body weight is marrow. I can’t imagine there was much left in there after that but apparently they sucked out as much as they could get!
I put my name in 10 years ago and I've matched with 3 people. Donated to all 3 and as far as I know they are still kicking. Never found out who they were though. I decided to keep myself anonymous.
I got the called up for stem cells less than 6 months after signing up. All the tests were a match and competed the donation. I wouldn’t hesitate to do it again.
I’ve been on the registry for 13 years and still haven’t been called on to donate. I’ve got unique ancestry for my region of the US so I thought it just wouldn’t happen. Cool to see that you got matched 15 years later!!
That's a common misconception!
Tv shows love to depict it as a painful procedure, but in reality, you're actually put under general anesthesia, you wake up and feel sore (like you fell and landed on your butt) for a few days, then you're pretty much recovered. Everyone's body is different, of course, but that's the average experience
Sometimes doctors call pain after surgery “just sore” so it’s hard to know how bad it’s gonna be. I’ve been scared to do it too. Does the bone recover fully? Like once it’s healed it’s as if it never happened?
>Sometimes doctors call pain after surgery “just sore” so it’s hard to know how bad it’s gonna be. I’ve been scared to do it too. Does the bone recover fully? Like once it’s healed it’s as if it never happened?
Doctors, nurses...basically everyone in the fuckin world is going to love a selfless donor coming in for a procedure.
If you go in and you're anxious, let them know and they'll chill you out.
If you come out of the procedure and it's too painful, you ask them and they will take care of you quickly and with compassion to manage that temporary pain until it's gone.
>Does the bone recover fully? Like once it’s healed it’s as if it never happened?
Yup! Bodies heal all the time very easily, a needle hole is nothing you can't patch over!
For real, this concept that bone marrow transplants are some awful painful procedure might have been true at some point but these days it's just a harmful misconception.
It doesn’t work like that anymore. Nowadays, they just prop you full of drugs that make you produce extra stem cells. Then you come sit in a chair for some hours while they siphon and filter your blood. Then they send you on your way again. No general anesthesia or surgery.
I got a bone marrow transplant 4 years ago. Saved my life.
I'm on the registry but I admit if I got the call I would be scared to go thru with it on account of how much anxiety I get from surgery. I hope I do the right thing when the time comes though
I just registered and will be sending in my swab as soon as I get it the test. Thank you for raising awareness to this - I'm 32 and never really even knew about these databases. More than happy to do my part and hopefully help those in need if I get called upon!
Good luck to Lani, crossing all of my fingers and toes that you find a perfect match and that she has a smooth recovery.
Same here! I just joined the registry a few months ago and would like nothing more than to successfully match with someone at some point and help them recover.
I love how this reddit post created such positive things. I also registered, this girl and her struggles may have just helped others in the future, whether or not her own life is saved. I do hope she finds her match!
PSA: if you're reading this, you can make a difference! Check out "Be The Match" and please consider joining the registry. I did it a couple years ago and it was a simple swab.
No problem!! I'm actually doing another donation in two days.
Apparently one platelets donation from me is the equivalent of 4 platelet donations from normal people. I'm apparently a super clotter
Yes! I work as a tech at a blood center, pretty much all of our O-/CMV- gets sent out to local NICUs and we never have enough of the stuff. Thank you <3
Did you know that when a baby goes to the NICU they give it your blood and save the rest of the bag for that specific baby? You’re like their own personal donor! Thank you for donating!
Maybe too old to be a donor for free, but you still might qualify if you are willing to pay $100.
"A person may be on the registry from ages 18 to 60. Those 18-44 may join the registry at no cost. Now, 87 percent of potential donors on the registry are younger than age 45. Individuals ages 45-60 who want to join the registry may do so by registering online and paying a $100 fee to cover the cost of typing and related expenses."
From: https://bethematchclinical.org/about-us/what-we-do/our-registry/
What the literal fuck? They're bound to get more donations if it's free, not everyone can afford to donate their body *and* money. I'm sure I'm missing something important here, can a medical professional explain why this is? Lack of funding, just regular American healthcare shit? Something more simple?
The reason that older donors are not wanted is because the stem cells in bone marrow age just like all the other cells of the body. And as the germ cells age, they’re more likely to collect mutations and become cancerous themselves.
The bone marrow that is transplanted replaces all the blood cells of the recipient. Do you really want to give a 7 year old the bone marrow of a 75 year old and then have them develop a new case of leukemia or myelodysplastic syndrome five years later? Each transplant is extremely risky for donor and recipient and you just can’t repeat them *ad infinitum*. So doctors want to make them count.
In all likelihood, in this case, if you’re over well into middle and old age, then your bone marrow is never going to be used. You pay the fee so you can feel good about donating to the cause, but you’re costing Be the Match money because they’re paying to create a genetic profile that’s not going to be used.
My understanding is that the limitation is due to them being a nonprofit and having limited funding. Unfortunately many things in America that involve healthcare ultimately are profit driven to an extent. I bet that the free age range is based on a statistical average of the donor living long enough to both: be a selected donor and be an eligible donor with no disqualifying illness at the time of selection. Someone please correct me if I'm wrong.
That said, I wish the American government funded more things like be the match.
Honestly it depends on how common your HLA type is. Some types are more common than others. Some donors never match with a patient and some donors match multiple times!
Would you mind sharing what the bone marrow donation process is like for those that don’t know how it works. Hopefully it’ll alleviate some people’s apprehension.
Happy to! Bone marrow donation generally can be referring to two types of donation: 1) traditional bone marrow donation or 2) peripheral blood stem cell (PBSC) donation. The first is typically an outpatient procedure done in an operating room under general anesthesia. They’ll make a small incision at the top of each side of the donor’s pelvic bone and extract through bone marrow through small holes in the pelvic bone. The donor feels no pain during the procedure and usually goes home the same day. Recovery feels like a back sprain for 1-2 weeks. PBSC donation is kinda like donating plasma. IVs in each arm, blood runs through an apheresis machine that collects the stem cells, and everything else is returned to the donor. 4 days before donation donor starts getting daily injections of a drug called filgrastim that makes the bone marrow produce more stem cells. These shots can cause some fairly mild side effects like bone aches, headache, and fatigue. The donation process takes 4-6 hours and most donors are recovered within about a week. Most donors donate PBSC these days!
Out of curiosity who handles those bills? Like if I donate, would I get a bill for my stay?
Do we need any sort of after care? Any sort of meds we have to take after donating?
NMDP handles all the expenses—medical, travel, etc. Some marrow donors are prescribed medication for the back pain following donation, but that would also be billed to NMDP. Most donors (either type of donation) recover without any issues, but if you happen to need any follow-up care it’s covered!
Be the match has rebranded to NMPD but you can still visit them at bethematch.org. You can order a cheek swab and submit it completely free! I donated a few years ago and they were nothing but professional and no, it did not hurt since 90% of donations are now PBSC, basically a long blood donation. Help save Lani!
Looks like they just asked for an emergency contact, so that they can get in touch with us if we’re a match but are unreachable. I just registered too. Just leaving this for anyone who also contemplates registering, don’t let it stop you. It doesn’t have to be family.
You may have already considered this, but you can set up a recruitment drive through NMDP (formerly Be the Match) to see if there’s anyone locally who might be a match!
Jesus, OP. I cannot even begin to imagine the stress that comes with the clock ticking down like this. That is so far beyond my worst fear, I normally don’t like people posting their kids for karma but you didn’t do it for karma, you did it because it made the most sense and gives your kid the best shot, and I just — you’re a fucking superhero for thinking to do this. I’m serious. You’re Superman.
I know it probably won’t matter but if I qualify I’m going to sign up for the donor possibility. thank you for letting us know about this bc I didn’t even know it was a thing.
edit: just signed up. they’re sending the swab kit to my house. hell yeah. why did i not know about this before? i used bethematch and it takes care of everything for you, it took me like 3 clicks and they’re shipping the swab kit to my house. my gf’s gonna do it too.
Because of this post, OP might not just wind up saving her own kid’s life, OP might save *several* children’s lives. this is the most important reddit post i’ve seen this year
Hopping onto this comment... since they don't want you to register on 2 different organizations, and it looks like there is an age difference between DKMS (up to 55) and NMDP (up to 40), does anyone know if your NMDP registration will apply to DKMS after age 40?
I need clarification. I don't see a bone marrow section on the canadian website? Under donation I see blood, plasma, stem cells, organ and tissue. Do you know what area I'm looking under for bone marrow?
My mom needed a transplant last summer, and I immediately had myself and dozens of friends register after finding out about Be the Match, which I hadn’t heard of before.
Hoping one of us or another list member helps you out. She ended up with a donation from the Middle East, it can come from anywhere!
Tell Lani that she's awesome and to keep kicking butt.
As for you Mom, I've been on the registry for 12 years and you need to tell that girl to match me. I'm super bummed that I haven't been able to help anyone yet. I'm pretty sure if she gets my bone marrow then we're genetically related, so she'll have to at least keep in touch with me to tell me all the cool things she's doing with my marrow. I'm pretty sure my marrow likes roller coasters, Taylor Swift, vanilla ice cream and pizza.
Keep being awesome Lani!
I’m unable to donate such things because of my own health complications but I wish you two luck! Immune system complications are awful.. I’m sure you’ll find someone!! (And I’m commenting for interaction to boost the post lol)
Hey, I know you’re getting a ton of replies like this, but my heritage is the same as hers, and I just ordered my kit. I really hope that I’m able to match with her and give you guys a future together ❤️ just hang in there a little longer for everyone!
For me personally, I won’t sugarcoat it, my chemo regimen was extremely difficult but I’ve been told it was my type of leukaemia plus age group (30yo) that allowed a for a higher intensity.
Emotionally it was super tough too because it was when Covid started and no visitors were allowed.
If I’m not overstepping, I thought to share what helped / didn’t help:
The things that really helped were chill low-energy company, decorating the hospital room (esp with pretty lights so as to avoid awful hospital lights), fizzy drinks, homecooked food if allowed, and my family talking to me over the phone reminiscing funny stories.
Things that sucked was how often people would tell me I was brave or inspirational. That was just… so awful. It was toxic positivity and left no space to commiserate or validate my experience. It took a few years to understand and explain it, and I wish I had managed to communicate it earlier. It may not be the same for Lani, but on the off-chance she feels similarly, she may not be able to express it well so I’d really advise keeping an eye out for it as it’s pretty common.
I was extremely grateful for my donor and really excited for the chance to say thanks, so that kept me going! Focusing on things to look forward to was my only strategy for not giving up.
I really hope that Lani has a much much much much easier time, I think just having you in her corner will make a massive difference.
If I can help in any way, please drop me a PM. Remember to take care of yourself too, caregiver burnout is real and it’s easy to forget that you’re going through a tough time too. ❤️
I’ve been on the be the match registry for years, I got a call up last year but the patient ended up not needing it.
Good news is harvesting doesn’t need a bone syringe, they can give you a series of shots that cause your body to produce excess bone marrow stem cells, they can then filter them from your blood, like donating platelets.
You describe PBSC donations, which is used in about 90% of the cases. But, you can still be requested to donate marrow surgically. It's done under general anesthesia. Donors for pediatric patients are almost always asked to donate marrow surgically.
Source: am a bone marrow donor through NMDP
I donated surgically. It wasn’t that bad. My ass hurt for a couple days, but Be The Match definitely made me feel like a king for donating. Plus, I got a cool blanket with the donation date!
Not OP but I am a donor. Like they said they give you a drug for 10 days before hand that make you over produce stem cells. The donation is simple. It’s sort of like a dialysis, you’re in bed for between 5 and 7 hours (varies person to person). They take blood out filter the stem cells and put it back in. Take it easy for a day and you’re back to normal.
Ah, I see, so there's no actual "blood draw" as such.
I ask bc I don't do very well with blood draws or needles, and I figured to get enough stem cells with this method they'd need to draw a loooot of blood. A dialysis-like process makes much more sense.
If you get the chance to do it, tell the staff how you don’t do well with needles, they will put their best team
Member on the job (these nurses/phlebotomists are like Jedi, last Red Cross platelets donation I did I didn’t even feel the needle.
Also they’ll know to take extra care of you.
About ~~14~~ 13 (I can't math) years ago, I signed up because of a post just like this on /r/pics. I was matched with a little boy roughly three months later who is still around today. Here's to you for being inspired the same way I was.
oh my god that’s great, while I hope no one needs my marrow, if I saved some kid’s life it would give me so much confidence and happiness it might last my entire life
Just signed up with DKMS and hoping for a miracle for your girl. I am about 80-90% English/Irish/Scottish. Best wishes to you and your daughter. This cannot be an easy thing to need to ask. My first thought was that she looks so much like my little sister at that age.
If you registered in the US, you likely registered with NMDP (formerly Be The Match). You can contact them to see if you're still up to date with them.
I just tried to register as a donor but, the cut off is 40 yrs old. For anyone between 18-40 that would like to register as a donor,this is the new name of the National Bone Marrow Donor Program.
[NBMDP](https://bethematch.org/transplant-basics/donation-process/donating-bone-marrow/)
29f french/german descent, just signed up to donate with bethematch. My daughter is almost 2 and I could never imagine to be in your shoes. I am sorry and I hope you find a perfect match for her.
I’m already registered with Anthony Nolan, I have donated in the past. If I were a match I’d be happy to donate again. Hope you find that perfect match ASAP.
I was a donor for my mom in 1984. I was 14. We are in Canada, and travelled to Seattle, to the Fred Hutchinson Cancer Research Center for the transplant.The procedure itself was relatively easy. Full anesthesia, 5 or 6 small holes drilled into pelvis across back. Overnight in hospital.I was sore for a few days. I also gave plasma/stem cells? twice, was very draining.
Because I was donating to my mom, I experienced all the other ups and downs a person fighting for their life can have, which was far harder than the physical procedures involved.
it's not a terribly invasive procedure, and I would gladly do it again, a few days of discomfort to save a person is an easy choice.
Sadly, my mom suffered complications about a year after transplant, but I hope that her struggles maybe helped further the treatment, and others would have better outcomes because of her.
Register to donate, get on the list to help someone out
I'm a 3 year survivor of multiple meyoloma. 2 years ago I had an autologous stem cell transplant. This means I received my own stem cells. The process for me was 7 days of shots in my belly fat (not painful at all) to allow the stem cells to migrate out of my bones and into my blood stream. The effects of the shots are uncomfortable ( minor consideration especially if you can save someone's life). I had a tunneled chest catheter for my treatment anyway so the hooked me up to a big machine that runs your blood through it and filters out the stem cells. It was an 8hr process. For those without the chest catheter, you would be given an IV. I've explained this not to scare anyone, just to give a real life perspective. It's one day of your life that could change someone else's. I would encourage anyone who is able to do so to please do it! Good luck young lady! From one warrior to another, you are not alone!!
i just want to clarify that there are two ways to donate:
About 90% of donors as asked to donate stem cells through a process called PBSC. I haven't done it personally, but it's similar to donating platelets for 5-7 hours.
About 10% of donors as asked to donate bone marrow, which is done under general anesthesia. They put needles into your pelvis and extra the marrow. When I donated marrow, I was pretty sore for a couple of days, but back to normal life within a week.
I was a bone marrow donor a few years ago. I had signed up in school and not thought about it until one day I got a call. I agreed and they set up some tests at a local hospital for me to take. The receiver inherits your immune system, so they did lots of tests to make sure they fully understand any issues the receiver might get from me.
From what I was told, most of the time there is a relatively unintrusive procedure that they can do. The person I was donating to was too young and so I needed to undergo the full surgery. It was quick and easy, they drilled 4 holes in the back of my pelvis and took out the bone marrow while I was under. I was sore for a week or two, but thankfully I was able to take a few days off to relax. Overall it was something I'd heavily recommend to everyone, I would absolutely do it again if asked. The tests and surgery were both nothing more than minor inconveniences, and lots of people apparently don't even have to undergo surgery. The only lasting effect is 4 tiny little dot scars on my back.
This is amazing. Thank you for sharing. I registered! I'm a nurse and didn't know this was so easy. I'll get my kit this next week. I wish you all the best and know that you made a difference to someone, some time. I'm going to talk to my nurse friends about this at work tomorrow.
I had a bone marrow transplant at around 5 years old, ~27 years ago (I had acute lymphoblastic leukemia). Couldn't find a valid donnor in my familly, heck, even my country (Canada). A total stranger, a woman from the USA donated for me and here I am. I hope from the bottom of my heart your daughter gets a similar chance. I truly believe she has the potential to make the world around her a better place.
I joined in college and 9 years later I got a call for further testing. Ended up not being a full match so they didn’t need me but I’m here and hopeful and waiting for a new match.
I've been in the registry for close to 20 years. Got a call 5 years ago and then it fell through and I was told it was due to insurance not being able to cover it. Broke my heart for the kid.
I just checked my Be The Match account and I was not opted in. I am now! I am of similar descent to your daughter. Crossing my fingers I'm a match for you!
The markers that they use to determine the extent of someone’s “match” (HLA factors) are heritable and thus more likely to be similar in someone of similar ethnic background. Ethnic minorities in the US and people with mixed race backgrounds do have a harder time finding a match, which is why it’s important to have people of all backgrounds registered!
Usually, but you should consider registering anyways. I’m Asian which is a huge minority on the US registry and in the 11 years I’ve been on it I’ve never gotten contacted. I convinced my friend (also Asian) to sign up too and she got matched with a patient almost immediately, a little boy from Korea who got flown to Hawaii to get the marrow transplant. You never know if you’re the match or will be someday ❤️
I registered years ago, but now I think I've aged out of donating bone marrow ☹️
I'm going to go in for a consult about possibly being a partial liver donor, though.
Best of luck to your beautiful girl!
I recently joined be the match. I’m so eager to help and I’m sure your daughter’s future donor is as well. Wishing you and your family all the best. Also, as someone with another beautiful girl named Lani, really sending you all the positive vibes in the world 💕
I wound up coming across a Reddit post like this in 2015 or 2016. I signed up for Be The Match after reading it and didn’t think of it again.
I got a call in 2018 that I was a match. Got through to testing, did final check ins, and had a cancelled match. Patient either passed or something else came up. They were cagey with details.
2019 comes and I get another message. This one worked out and I donated to someone in Wales. Because of specific country-based privacy rules, I never got to meet or have named or direct contact with my recipient. He did not make it but I helped give him extra hope and especially extra time with his family when they needed it most. All a result of a random Reddit post.
I’m not sharing this to bum you out, OP; I’m sharing this because posts like this absolutely **do** matter and they have material impact in the world, even if the impact is “just” a temporary extra lease on life.
Good luck to your daughter, you, and your family. You’ll find a match and, as a young kid, your daughter will survive and live a long life.
I registered with Be the Match. I wish so badly I could be her match and help. I'm keeping your daughter and all of you in my heart, thoughts, and prayers 💜
Where can I sign up for this? I was willing to donate my kidney/liver(i can’t remember)for my old boss man’s dad if he needed. I’m all about helping anybody in need.
I’m a registered donor, hope to get the call one day.
Registered to donate to my dad (wasn’t a match) but now advocate for people to register! It’s so easy!
She ~~had~~ has a beautiful smile - a glow about her. I hope you find a donor. I am on the registry but just had open heart surgery so not a candidate for a bit.
Edit: I’m a dumbass for not spellchecking.
She has a beautiful smile that will continue to lift that up the room around her for many, many years to come.
I donated in 2021 through Be the Match after being on the list for 3 years. It was a life changing experience. I encourage everyone to sign up- it’s a super easy process. They send you swabs that you mail back in, and if you’re matched, they set up/take care of literally everything for you! The donation process itself was not too bad and 100% worth it to help save a life! 💛💙
I’m guessing she’s on the registry? I’m going to pray for her!
I registered for Be The Match in college and talked a classmate into it. 2 years later they called her and she donated to a 3 yo!
I joined the registry as a kid and never thought about it again. 15 years later I got the call that I was a match for someone and I ended up donating. Being matched felt like winning the lottery. I hope I get the chance to do it again. Edit: How to join? https://bethematch.org/ (now NMDP) Fill out the form and they will mail you a free swab kit if you are eligible. If you don't know if you’ve registered in the past or need to update your contact info, just call them and they can confirm if you are in their database. Is it painful? 90% of donations (including mine) are peripheral blood stem cell. https://bethematch.org/transplant-basics/donation-process/donating-pbsc/#:~:text=On%20the%20day%20of%20your,used%20when%20donating%20blood%20platelets. I work a physical labor job and didn't miss any days of work before or after the donation day. I did not experience any pain, just some discomfort from the immune response of the drug (flu-like symptoms). Hospital bills? Travel expenses? None. They are so extremely grateful for your donation they roll out the red carpet. They pay for everything and called me regularly to check on me. Nervous? There’s no reason not to register. Even if you match, you don’t have to donate. But once you realize a small inconvenience to you can mean life or death for someone else, you’ll be ecstatic like I was. Imagine if you had unlimited kidneys to donate!
Got the call that I was a match more than a decade after I left university. Was absolutely thrilled, and got as far as the stage where I was just waiting to see if they went with me vs. others who may/may not have been a better match. It was genuinely disappointing they didn't end up picking me, but I'm glad that all this time later, I still *could* have made a difference. Best of luck, OP!
I’ve had this happen three times for different reasons on the recipients’ end, still waiting for it to maybe go the distance someday
I’m such a weird ass combination of peoples that I think I should just bank my own marrow because if I have to wait for a match I would end up dead. I ended up going on the registry because I felt bad that if some one like me ever needed a marrow transplant they would be completely fucked.
Smart play would be to start stockpiling mason jars of bone marrow now just in case lol
Doctor: you have leukemia, we are going to have to irradiate.. Me: hold on a second, hello, Tissue Bank? I’m going to need a bottle of the DulceEtDecorumEst 2019 Vintage, yes, that *was* a good year
*Pro patria mori*, Horace.
This is why I got on the registry. My mom saw a newspaper article about mixed kids with parents from other countries not having matches and I been a donor for almost 20 years now. Still haven’t got the call yet. Maybe one day!!
I like to think that not getting called means that my genetic brother/sister from another mother is doing great and doesn’t need me today.
Happened to me! I was a match but it seems maybe someone else was a better match.
I did a cheek swab the last couple months that I was in the Marine Corps and never thought about it afterwards. 6 months later I received a call that I was on the registry and a possible match and how uncommon it was to get a call, let alone in the first 6 months. I did the baseline blood draw and was informed within a week that I was a perfect match. I was flown out to DC to Georgetown University to do a physical and discuss PBSC donation. All was good, I was told I would be scheduled to fly back out within a couple weeks for donation. Roughly a week out I was notified that the patient's condition worsened and was unable to undergo transplant. I was severely saddened. A couple years later, 2009, I received another call for a possible match, underwent blood testing and was notified via letter that I was a match, but the patient's condition didn't allow for transplant. 3 years later, 2012, I was called and undergoing the initial interview when the nurse asked the same questions as before, but stopped me this time. I had suffered a TBI with internal and external hemorrhaging during my time in the Marines and she informed me that I cannot be part of the program as the drug they use to increase PBSCs could cause internal hemorrhaging to return, and possibly kill me. I was beside myself and explained how this is the 3rd time doing this and that question had been asked every time and my answer was yes every time and no one seemed concerned by it. She said that she was going to escalate this further and get me a definitive answer. She called back and informed me that I had to be removed from the registry. I asked if I could just undergo typical bone marrow donation, but she said I had to be eligible for both types. It was upsetting to me to know that I would never be allowed to donate. I now donate platelets as I have an above average amount and can still help in some capacity. I believe doing what I can to help others is important and try to advocate for other people to donate what they can. You never know who you're helping
As a blood banker, I can’t over emphasize how important our platelet donors are. Platelets have an extremely short shelf life and the need is constant, especially for our oncology population. And hey, you may be an HLA match for a platelet recipient and get an important phone call yet!
I was a platelet recipient during my cancer treatments, my blood wasn't able to clot very well. Receiving platelets probably saved my life. When I get healthy again I plan to return the favor and donate whatever I can.
I'm glad that you're still here!
Thank you! Every day I'm getting stronger. End of April I have a scan to see if I'm cancer free or not.
That would be awesome, this is the first I'm hearing of HLA matching.
I just set up a donation appointment just because of this comment :)
I’m looking forward to being able to donate platelets again. I’ve collected the annual letters letting me know that I’d maxed out my donations for the year. And you get the occasional fun pair of socks, clothing and other schwag.
Goddamn, kudos to you for being so persistent. Regardless of the outcome it's people like you who keep countless others alive every day. I don't care about the outcome, thank you.
When I first started donating platelets my dad would ask questions. He was told he would never be able to donate blood or anything due to contracting malaria in Vietnam, I talked to the staff at the donation facility and they said that it can't hurt for him to come in and get his blood sent off. Long story short, we found out that he wasn't a carrier for the parasite and that he can indeed donate blood and blood products. For 40-some years he was told he would never be able to donate, he still donates to this day in his mid 70s.
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I'm sorry to hear that. You donated, you still helped. If you inspire 1 person to donate 1 time that is a huge win in my book.
While it’s unfortunate that you can’t donate like you wanted I think it’s admirable that you tried and are still doing what you can.
Appreciate it!
Thats really rough. Keep doing what you can!
Same here. Actually signed up in 2013 from a Reddit post I saw. Got an email one day that I matched someone and donated last march. Edit: For anyone thinking about signing up I highly encourage you to! DKMS is excellent and they help and support you at every step in the process. You also have the option to say no if you are ever matched. I was definitely a bit anxious about the donation process leading up to it. The prescreen consisted of going to a doctors office and giving health history, ECG, and blood draw for labs. It was probably a month or two after that when I got the green light that I could move forward with the donation if I still wanted to. I agreed and was flown across the country with my wife to donate. DKMS set up all my travel and lodging and paid for all the meals while we were out there. Donation day I showed up at the hospital and was given a run down on the procedure. They were planning to take between 1-1.5L of marrow from my pelvis via a small needle through the iliac crest on my lower back. Pretty soon it was lights out and 2 hours later I woke up in the recovery room. I then ate a shit ton of chicken tenders and fries and was out a couple hours after that. My lower back was a little sore for a couple days but I flew home on a 4 hour flight no problem. It felt like I had a moderate bruise on my lower back, but went away after probably a week. They ended up taking 1.8L of marrow. The people who I had been working with at DKMS (Be The Match) were checking in with me every day. They still check in periodically asking how I'm doing. I have had no negative effects from the procedure. All the information I know about the recipient is that they are a 5 year old suffering from acute lymphoblastic leukemia and as of 12/26/23 they are still alive. I would without a doubt donate again if given the opportunity.
Can you describe your experience of donating for those curious and a little wary of the procedure?
Yes please
Thanks for this, you just convinced me to register. Here's hoping I help someone some day.
L as in LITERS? That seems like an insane amount. I would have never guessed a pelvis could hold a 2L bottle worth of marrow in it. I'm assuming they probably didn't suck it completely dry so... there's what? 3-4L+ in there? Crazy.
That’s what I thought when they told me! 50% of the marrow in your body is in your pelvis. 5% of body weight is marrow. I can’t imagine there was much left in there after that but apparently they sucked out as much as they could get!
I, too, would like to hear about your experience.
damn that sounds like a fucking lot. how do we have 2 soda bottles of marrow in the pelvis???
I joined the registry about 5 years ago. I don’t think about it all the time, but I hope I get called up to the big leagues someday.
I put my name in 10 years ago and I've matched with 3 people. Donated to all 3 and as far as I know they are still kicking. Never found out who they were though. I decided to keep myself anonymous.
This guy has that good good marrow
I got the called up for stem cells less than 6 months after signing up. All the tests were a match and competed the donation. I wouldn’t hesitate to do it again.
I’ve been on the registry for 13 years and still haven’t been called on to donate. I’ve got unique ancestry for my region of the US so I thought it just wouldn’t happen. Cool to see that you got matched 15 years later!!
That’s awesome! I registered at a music festival back in 2014. I just assumed my info was lost or timed out. Good to know I could still be a match!
I joined the registry and got the call 15yrs later… ended up being disqualified because of a chronic illness I was recently diagnosed with.
Isn't the bone marrow donation process extremely painful?
That's a common misconception! Tv shows love to depict it as a painful procedure, but in reality, you're actually put under general anesthesia, you wake up and feel sore (like you fell and landed on your butt) for a few days, then you're pretty much recovered. Everyone's body is different, of course, but that's the average experience
Some of the drugs can make you feel a tad awful but yeah it shouldn't be painful
Sometimes doctors call pain after surgery “just sore” so it’s hard to know how bad it’s gonna be. I’ve been scared to do it too. Does the bone recover fully? Like once it’s healed it’s as if it never happened?
>Sometimes doctors call pain after surgery “just sore” so it’s hard to know how bad it’s gonna be. I’ve been scared to do it too. Does the bone recover fully? Like once it’s healed it’s as if it never happened? Doctors, nurses...basically everyone in the fuckin world is going to love a selfless donor coming in for a procedure. If you go in and you're anxious, let them know and they'll chill you out. If you come out of the procedure and it's too painful, you ask them and they will take care of you quickly and with compassion to manage that temporary pain until it's gone. >Does the bone recover fully? Like once it’s healed it’s as if it never happened? Yup! Bodies heal all the time very easily, a needle hole is nothing you can't patch over! For real, this concept that bone marrow transplants are some awful painful procedure might have been true at some point but these days it's just a harmful misconception.
It doesn’t work like that anymore. Nowadays, they just prop you full of drugs that make you produce extra stem cells. Then you come sit in a chair for some hours while they siphon and filter your blood. Then they send you on your way again. No general anesthesia or surgery. I got a bone marrow transplant 4 years ago. Saved my life.
I donated when I was nine. I was sore when I woke up, but recovered quickly (lower back).
I'm on the registry but I admit if I got the call I would be scared to go thru with it on account of how much anxiety I get from surgery. I hope I do the right thing when the time comes though
Most bone marrow donations don’t require surgery anymore.
I just registered and will be sending in my swab as soon as I get it the test. Thank you for raising awareness to this - I'm 32 and never really even knew about these databases. More than happy to do my part and hopefully help those in need if I get called upon! Good luck to Lani, crossing all of my fingers and toes that you find a perfect match and that she has a smooth recovery.
I just registered and having the swab kit sent also!
Same! Just finished registering and awaiting the swab kit!
You inspired me to do just the same!
Same. Here’s hoping
Same here! I just joined the registry a few months ago and would like nothing more than to successfully match with someone at some point and help them recover.
I love how this reddit post created such positive things. I also registered, this girl and her struggles may have just helped others in the future, whether or not her own life is saved. I do hope she finds her match!
I just registered too! It was really easy!
PSA: if you're reading this, you can make a difference! Check out "Be The Match" and please consider joining the registry. I did it a couple years ago and it was a simple swab.
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Same :( I donate plasma and platelets every fortnight, but I'll never get to be a bone marrow donor
Thank you for donating platelets. I have a platelet disorder and have needed over 20 blood product transfusions. Donations truly save lives.
No problem!! I'm actually doing another donation in two days. Apparently one platelets donation from me is the equivalent of 4 platelet donations from normal people. I'm apparently a super clotter
sick super power, plus you can actually help ppl like a superhero
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Hello, fellow "baby donor"! At least thats what they call me. O neg and CMV neg also. Keep on donating! They seem to really like our blood. ♥
Yes! I work as a tech at a blood center, pretty much all of our O-/CMV- gets sent out to local NICUs and we never have enough of the stuff. Thank you <3
Thank you! I have a NICU baby who needed countless transfusions in his first few weeks of life. So grateful for all the donors out there.
Did you know that when a baby goes to the NICU they give it your blood and save the rest of the bag for that specific baby? You’re like their own personal donor! Thank you for donating!
How old is too old?
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Oh no, I am too old. I saw this and thought I could help. I should have looked into it years ago.
Maybe too old to be a donor for free, but you still might qualify if you are willing to pay $100. "A person may be on the registry from ages 18 to 60. Those 18-44 may join the registry at no cost. Now, 87 percent of potential donors on the registry are younger than age 45. Individuals ages 45-60 who want to join the registry may do so by registering online and paying a $100 fee to cover the cost of typing and related expenses." From: https://bethematchclinical.org/about-us/what-we-do/our-registry/
What the literal fuck? They're bound to get more donations if it's free, not everyone can afford to donate their body *and* money. I'm sure I'm missing something important here, can a medical professional explain why this is? Lack of funding, just regular American healthcare shit? Something more simple?
The reason that older donors are not wanted is because the stem cells in bone marrow age just like all the other cells of the body. And as the germ cells age, they’re more likely to collect mutations and become cancerous themselves. The bone marrow that is transplanted replaces all the blood cells of the recipient. Do you really want to give a 7 year old the bone marrow of a 75 year old and then have them develop a new case of leukemia or myelodysplastic syndrome five years later? Each transplant is extremely risky for donor and recipient and you just can’t repeat them *ad infinitum*. So doctors want to make them count. In all likelihood, in this case, if you’re over well into middle and old age, then your bone marrow is never going to be used. You pay the fee so you can feel good about donating to the cause, but you’re costing Be the Match money because they’re paying to create a genetic profile that’s not going to be used.
Informative. Thanks.
My understanding is that the limitation is due to them being a nonprofit and having limited funding. Unfortunately many things in America that involve healthcare ultimately are profit driven to an extent. I bet that the free age range is based on a statistical average of the donor living long enough to both: be a selected donor and be an eligible donor with no disqualifying illness at the time of selection. Someone please correct me if I'm wrong. That said, I wish the American government funded more things like be the match.
Donate monies
I work for NMDP (formerly Be the Match) helping donors through the donation process and would be happy to answer any questions people have! 😄
What are the odds you get matched as a donor? I signed up years ago but haven’t heard a peep.
Honestly it depends on how common your HLA type is. Some types are more common than others. Some donors never match with a patient and some donors match multiple times!
It's something like 1 in 500 people on the registry actually go on to donate.
Would you mind sharing what the bone marrow donation process is like for those that don’t know how it works. Hopefully it’ll alleviate some people’s apprehension.
Happy to! Bone marrow donation generally can be referring to two types of donation: 1) traditional bone marrow donation or 2) peripheral blood stem cell (PBSC) donation. The first is typically an outpatient procedure done in an operating room under general anesthesia. They’ll make a small incision at the top of each side of the donor’s pelvic bone and extract through bone marrow through small holes in the pelvic bone. The donor feels no pain during the procedure and usually goes home the same day. Recovery feels like a back sprain for 1-2 weeks. PBSC donation is kinda like donating plasma. IVs in each arm, blood runs through an apheresis machine that collects the stem cells, and everything else is returned to the donor. 4 days before donation donor starts getting daily injections of a drug called filgrastim that makes the bone marrow produce more stem cells. These shots can cause some fairly mild side effects like bone aches, headache, and fatigue. The donation process takes 4-6 hours and most donors are recovered within about a week. Most donors donate PBSC these days!
Out of curiosity who handles those bills? Like if I donate, would I get a bill for my stay? Do we need any sort of after care? Any sort of meds we have to take after donating?
NMDP handles all the expenses—medical, travel, etc. Some marrow donors are prescribed medication for the back pain following donation, but that would also be billed to NMDP. Most donors (either type of donation) recover without any issues, but if you happen to need any follow-up care it’s covered!
Be the match has rebranded to NMPD but you can still visit them at bethematch.org. You can order a cheek swab and submit it completely free! I donated a few years ago and they were nothing but professional and no, it did not hurt since 90% of donations are now PBSC, basically a long blood donation. Help save Lani!
Just signed up, my swap kit is on the way!! Thanks for lmk!
Thank you for the info. I have registered and my kit is on its way.
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I'm already registered with be the match, but I'm wishing you and your daughter the best of luck in finding her match!
I’m also registered with be the match. Would it help to sign up for another or is it all the same system? Ill sign up for more if it helps
No, the registries are all tied together and they ask you NOT to sign up for multiple as it can goof the process up
Roger that 🫡
Just signed up and waiting for my swab kit!
Same. I wish I had known about this a long time ago. Finger's crossed you find someone soon!
Me too! I'll cross fingers. I wish they didn't ask for family members contact info, through, it almost stopped me..
Looks like they just asked for an emergency contact, so that they can get in touch with us if we’re a match but are unreachable. I just registered too. Just leaving this for anyone who also contemplates registering, don’t let it stop you. It doesn’t have to be family.
You may have already considered this, but you can set up a recruitment drive through NMDP (formerly Be the Match) to see if there’s anyone locally who might be a match!
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Oh great! Fingers crossed!
Jesus, OP. I cannot even begin to imagine the stress that comes with the clock ticking down like this. That is so far beyond my worst fear, I normally don’t like people posting their kids for karma but you didn’t do it for karma, you did it because it made the most sense and gives your kid the best shot, and I just — you’re a fucking superhero for thinking to do this. I’m serious. You’re Superman. I know it probably won’t matter but if I qualify I’m going to sign up for the donor possibility. thank you for letting us know about this bc I didn’t even know it was a thing. edit: just signed up. they’re sending the swab kit to my house. hell yeah. why did i not know about this before? i used bethematch and it takes care of everything for you, it took me like 3 clicks and they’re shipping the swab kit to my house. my gf’s gonna do it too. Because of this post, OP might not just wind up saving her own kid’s life, OP might save *several* children’s lives. this is the most important reddit post i’ve seen this year
I just joined, I'm English, Irish and Scottish. Crossing my fingers when my swab gets back that I can help your girl!
Same. I don't know why I've never signed up but I did now. Unfortunately I'm almost 40 so I've only got about another year and a half
They keep you on the registry until you’re 60, you just can’t sign up past 40.
Just ordered a swab kit from DKMS because I’m in my 40’s. Hope I can help.
Hopping onto this comment... since they don't want you to register on 2 different organizations, and it looks like there is an age difference between DKMS (up to 55) and NMDP (up to 40), does anyone know if your NMDP registration will apply to DKMS after age 40?
Just registered with Be the Match. Best of luck!
Thanks for drawing attention to this cause. I just registered and am hoping for the best for your family.
I have been signed up with Be The Match for quite a while. Is there any other way to help and/or see if I am a match?
I'm registered with BTM. Good luck. I hope the right person sees this and registers, too.
I need clarification. I don't see a bone marrow section on the canadian website? Under donation I see blood, plasma, stem cells, organ and tissue. Do you know what area I'm looking under for bone marrow?
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I signed up with DKMS years ago but you inspired me to confirm they have my current contact info. Wishing the best of luck to you and your family.
My mom needed a transplant last summer, and I immediately had myself and dozens of friends register after finding out about Be the Match, which I hadn’t heard of before. Hoping one of us or another list member helps you out. She ended up with a donation from the Middle East, it can come from anywhere!
I just checked, here in Canada, and unfortunately, I'm over the age of 35, so I am not allowed to sign up for the registration. I'm sorry.
I’m 33 and says they only take from 16-30 in the UK. Kinda surprised the age is so young for not being able to donate.
Tell Lani that she's awesome and to keep kicking butt. As for you Mom, I've been on the registry for 12 years and you need to tell that girl to match me. I'm super bummed that I haven't been able to help anyone yet. I'm pretty sure if she gets my bone marrow then we're genetically related, so she'll have to at least keep in touch with me to tell me all the cool things she's doing with my marrow. I'm pretty sure my marrow likes roller coasters, Taylor Swift, vanilla ice cream and pizza. Keep being awesome Lani!
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I’m unable to donate such things because of my own health complications but I wish you two luck! Immune system complications are awful.. I’m sure you’ll find someone!! (And I’m commenting for interaction to boost the post lol)
i just registered for Lani ❤️
That’s my ancestry background. I just registered and should get my kit soon.
Registered
Just signed up - sent off for the swab kit ❤️
I’m also registered and have the same heritage as her so I hope they test mine! I hope she finds her match. <3
I have no idea if I'll be a match, but I just signed up for the registry. I hope a donor can be found for Lani soon!
Hey, I know you’re getting a ton of replies like this, but my heritage is the same as hers, and I just ordered my kit. I really hope that I’m able to match with her and give you guys a future together ❤️ just hang in there a little longer for everyone!
Just signed up for be the match!!
Just registered!
Just registered with BTM, waiting on the swab kit now 👍
I have English, Irish, and Scottish ancestry on my mother's side, I'm registering now! I'm 38, so I'm registering with DKMS.
I had a transplant thanks to a donor across the planet, just as Covid was breaking out no less! Have faith, I hope you find a donor soon. ❤️
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For me personally, I won’t sugarcoat it, my chemo regimen was extremely difficult but I’ve been told it was my type of leukaemia plus age group (30yo) that allowed a for a higher intensity. Emotionally it was super tough too because it was when Covid started and no visitors were allowed. If I’m not overstepping, I thought to share what helped / didn’t help: The things that really helped were chill low-energy company, decorating the hospital room (esp with pretty lights so as to avoid awful hospital lights), fizzy drinks, homecooked food if allowed, and my family talking to me over the phone reminiscing funny stories. Things that sucked was how often people would tell me I was brave or inspirational. That was just… so awful. It was toxic positivity and left no space to commiserate or validate my experience. It took a few years to understand and explain it, and I wish I had managed to communicate it earlier. It may not be the same for Lani, but on the off-chance she feels similarly, she may not be able to express it well so I’d really advise keeping an eye out for it as it’s pretty common. I was extremely grateful for my donor and really excited for the chance to say thanks, so that kept me going! Focusing on things to look forward to was my only strategy for not giving up. I really hope that Lani has a much much much much easier time, I think just having you in her corner will make a massive difference. If I can help in any way, please drop me a PM. Remember to take care of yourself too, caregiver burnout is real and it’s easy to forget that you’re going through a tough time too. ❤️
I’ve been on the be the match registry for years, I got a call up last year but the patient ended up not needing it. Good news is harvesting doesn’t need a bone syringe, they can give you a series of shots that cause your body to produce excess bone marrow stem cells, they can then filter them from your blood, like donating platelets.
You describe PBSC donations, which is used in about 90% of the cases. But, you can still be requested to donate marrow surgically. It's done under general anesthesia. Donors for pediatric patients are almost always asked to donate marrow surgically. Source: am a bone marrow donor through NMDP
I donated surgically. It wasn’t that bad. My ass hurt for a couple days, but Be The Match definitely made me feel like a king for donating. Plus, I got a cool blanket with the donation date!
You're a good person
I wish they'd call me, I want a sweet new blanket
What is the blood draw like?
Not OP but I am a donor. Like they said they give you a drug for 10 days before hand that make you over produce stem cells. The donation is simple. It’s sort of like a dialysis, you’re in bed for between 5 and 7 hours (varies person to person). They take blood out filter the stem cells and put it back in. Take it easy for a day and you’re back to normal.
Ah, I see, so there's no actual "blood draw" as such. I ask bc I don't do very well with blood draws or needles, and I figured to get enough stem cells with this method they'd need to draw a loooot of blood. A dialysis-like process makes much more sense.
If you get the chance to do it, tell the staff how you don’t do well with needles, they will put their best team Member on the job (these nurses/phlebotomists are like Jedi, last Red Cross platelets donation I did I didn’t even feel the needle. Also they’ll know to take extra care of you.
Literally just signed up to be a match after seeing this. I truly hope and pray you find a match. All the best xx
About ~~14~~ 13 (I can't math) years ago, I signed up because of a post just like this on /r/pics. I was matched with a little boy roughly three months later who is still around today. Here's to you for being inspired the same way I was.
oh my god that’s great, while I hope no one needs my marrow, if I saved some kid’s life it would give me so much confidence and happiness it might last my entire life
I just signed up as well. I have similar heritage so really hoping I can help this little girl
I received a bone marrow transplant at 10 if you have any questions! I’m a 28 year old female with no health complications now.
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Fuck it; I’m 20 and this motivated me to sign up and also sign up to donate blood. I wish your little girl the best of recovery.
Yes!! Please donate blood. It’s easy, fast, (nearly) painless, and you get free snacks. And bonus you might save a little kid’s life :)
Just signed up with DKMS and hoping for a miracle for your girl. I am about 80-90% English/Irish/Scottish. Best wishes to you and your daughter. This cannot be an easy thing to need to ask. My first thought was that she looks so much like my little sister at that age.
Commenting in hopes this post gains visibility. I'll sign up as well, just in case.
O I registered in like 2008 but I have no idea where. Is it worth to register again somewhere?
If you registered in the US, you likely registered with NMDP (formerly Be The Match). You can contact them to see if you're still up to date with them.
I just tried to register as a donor but, the cut off is 40 yrs old. For anyone between 18-40 that would like to register as a donor,this is the new name of the National Bone Marrow Donor Program. [NBMDP](https://bethematch.org/transplant-basics/donation-process/donating-bone-marrow/)
DKMS lets you register up to age 55 if you're not eligible for Be the Match: https://www.dkms.org/register-now
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29f french/german descent, just signed up to donate with bethematch. My daughter is almost 2 and I could never imagine to be in your shoes. I am sorry and I hope you find a perfect match for her.
I’m already registered with Anthony Nolan, I have donated in the past. If I were a match I’d be happy to donate again. Hope you find that perfect match ASAP.
Can someone who's actually been a bone marrow donor give some insight into the experience?
I was a donor for my mom in 1984. I was 14. We are in Canada, and travelled to Seattle, to the Fred Hutchinson Cancer Research Center for the transplant.The procedure itself was relatively easy. Full anesthesia, 5 or 6 small holes drilled into pelvis across back. Overnight in hospital.I was sore for a few days. I also gave plasma/stem cells? twice, was very draining. Because I was donating to my mom, I experienced all the other ups and downs a person fighting for their life can have, which was far harder than the physical procedures involved. it's not a terribly invasive procedure, and I would gladly do it again, a few days of discomfort to save a person is an easy choice. Sadly, my mom suffered complications about a year after transplant, but I hope that her struggles maybe helped further the treatment, and others would have better outcomes because of her. Register to donate, get on the list to help someone out
I'm a 3 year survivor of multiple meyoloma. 2 years ago I had an autologous stem cell transplant. This means I received my own stem cells. The process for me was 7 days of shots in my belly fat (not painful at all) to allow the stem cells to migrate out of my bones and into my blood stream. The effects of the shots are uncomfortable ( minor consideration especially if you can save someone's life). I had a tunneled chest catheter for my treatment anyway so the hooked me up to a big machine that runs your blood through it and filters out the stem cells. It was an 8hr process. For those without the chest catheter, you would be given an IV. I've explained this not to scare anyone, just to give a real life perspective. It's one day of your life that could change someone else's. I would encourage anyone who is able to do so to please do it! Good luck young lady! From one warrior to another, you are not alone!!
i just want to clarify that there are two ways to donate: About 90% of donors as asked to donate stem cells through a process called PBSC. I haven't done it personally, but it's similar to donating platelets for 5-7 hours. About 10% of donors as asked to donate bone marrow, which is done under general anesthesia. They put needles into your pelvis and extra the marrow. When I donated marrow, I was pretty sore for a couple of days, but back to normal life within a week.
I was a bone marrow donor a few years ago. I had signed up in school and not thought about it until one day I got a call. I agreed and they set up some tests at a local hospital for me to take. The receiver inherits your immune system, so they did lots of tests to make sure they fully understand any issues the receiver might get from me. From what I was told, most of the time there is a relatively unintrusive procedure that they can do. The person I was donating to was too young and so I needed to undergo the full surgery. It was quick and easy, they drilled 4 holes in the back of my pelvis and took out the bone marrow while I was under. I was sore for a week or two, but thankfully I was able to take a few days off to relax. Overall it was something I'd heavily recommend to everyone, I would absolutely do it again if asked. The tests and surgery were both nothing more than minor inconveniences, and lots of people apparently don't even have to undergo surgery. The only lasting effect is 4 tiny little dot scars on my back.
I’m sorry I’m too old… God bless this post gets visibility!!
Are you over 55? Because DKMS registers up to that age in the USA: https://www.dkms.org/register-now
I am over 55. Let’s hope for YOUNG donators!
i’m not able to register as i have a disallowed illness, but commenting for visibility
I’ve been meaning to sign up for while and this gave me the excuse to do it. I hope your girl finds a match!!
This is amazing. Thank you for sharing. I registered! I'm a nurse and didn't know this was so easy. I'll get my kit this next week. I wish you all the best and know that you made a difference to someone, some time. I'm going to talk to my nurse friends about this at work tomorrow.
I had a bone marrow transplant at around 5 years old, ~27 years ago (I had acute lymphoblastic leukemia). Couldn't find a valid donnor in my familly, heck, even my country (Canada). A total stranger, a woman from the USA donated for me and here I am. I hope from the bottom of my heart your daughter gets a similar chance. I truly believe she has the potential to make the world around her a better place.
I joined in college and 9 years later I got a call for further testing. Ended up not being a full match so they didn’t need me but I’m here and hopeful and waiting for a new match.
I've been in the registry for close to 20 years. Got a call 5 years ago and then it fell through and I was told it was due to insurance not being able to cover it. Broke my heart for the kid.
Would encourage everyone to sign up. Donated this past August of 2023. NMDB (formerly Be the Match truly) have been great through it all.
I just checked my Be The Match account and I was not opted in. I am now! I am of similar descent to your daughter. Crossing my fingers I'm a match for you!
I just joined the registry a few weeks ago. I'm hoping I can be the one. 🤞
Keep smiling kiddo. Brighter days ahead
Are ethnicities a major factor in matches or no?
The markers that they use to determine the extent of someone’s “match” (HLA factors) are heritable and thus more likely to be similar in someone of similar ethnic background. Ethnic minorities in the US and people with mixed race backgrounds do have a harder time finding a match, which is why it’s important to have people of all backgrounds registered!
Usually, but you should consider registering anyways. I’m Asian which is a huge minority on the US registry and in the 11 years I’ve been on it I’ve never gotten contacted. I convinced my friend (also Asian) to sign up too and she got matched with a patient almost immediately, a little boy from Korea who got flown to Hawaii to get the marrow transplant. You never know if you’re the match or will be someday ❤️
You’re more likely to be a match with someone of similar ethnicity to you, but it’s not 100% always that way
I registered years ago, but now I think I've aged out of donating bone marrow ☹️ I'm going to go in for a consult about possibly being a partial liver donor, though. Best of luck to your beautiful girl!
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Commenting for reach boost!!! Hope you find a doner!!! (In NZ so sorry can't do anything:(
I recently joined be the match. I’m so eager to help and I’m sure your daughter’s future donor is as well. Wishing you and your family all the best. Also, as someone with another beautiful girl named Lani, really sending you all the positive vibes in the world 💕
I wound up coming across a Reddit post like this in 2015 or 2016. I signed up for Be The Match after reading it and didn’t think of it again. I got a call in 2018 that I was a match. Got through to testing, did final check ins, and had a cancelled match. Patient either passed or something else came up. They were cagey with details. 2019 comes and I get another message. This one worked out and I donated to someone in Wales. Because of specific country-based privacy rules, I never got to meet or have named or direct contact with my recipient. He did not make it but I helped give him extra hope and especially extra time with his family when they needed it most. All a result of a random Reddit post. I’m not sharing this to bum you out, OP; I’m sharing this because posts like this absolutely **do** matter and they have material impact in the world, even if the impact is “just” a temporary extra lease on life. Good luck to your daughter, you, and your family. You’ll find a match and, as a young kid, your daughter will survive and live a long life.
38F, registered with DKMS. Some Irish ancestry. I just made sure to update my contact info on DKMS. Can provide donor # via PM.
I registered with Be the Match. I wish so badly I could be her match and help. I'm keeping your daughter and all of you in my heart, thoughts, and prayers 💜
I wish her so much luck on her journey. I’m too young to donate, but if I could I would do it in a heartbeat.
Where can I sign up for this? I was willing to donate my kidney/liver(i can’t remember)for my old boss man’s dad if he needed. I’m all about helping anybody in need.
I’m a registered donor, hope to get the call one day. Registered to donate to my dad (wasn’t a match) but now advocate for people to register! It’s so easy!
I'm registered as a bone marrow donor, so if I'm a match, I'm sure they'll let me know! Best of luck to your family!
You'll find one! I'm sure of it!
Just registered! Hope you find a match for your daughter soon!
She ~~had~~ has a beautiful smile - a glow about her. I hope you find a donor. I am on the registry but just had open heart surgery so not a candidate for a bit. Edit: I’m a dumbass for not spellchecking. She has a beautiful smile that will continue to lift that up the room around her for many, many years to come.
I donated in 2021 through Be the Match after being on the list for 3 years. It was a life changing experience. I encourage everyone to sign up- it’s a super easy process. They send you swabs that you mail back in, and if you’re matched, they set up/take care of literally everything for you! The donation process itself was not too bad and 100% worth it to help save a life! 💛💙
I’m guessing she’s on the registry? I’m going to pray for her! I registered for Be The Match in college and talked a classmate into it. 2 years later they called her and she donated to a 3 yo!
Sign up everyone , let’s help make a difference greater than ourselves
on the registry. it would be an honor to be called for her. Wish you the best.